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The power of connection
Over the past several months, I’ve found myself increasingly reflective on the intersection of culture, relationships, and my professional work with those who have an autism spectrum disorder. Last winter, an adolescent boy treated by myself and other providers died by suicide. Adam (name changed) had been diagnosed with autism as a toddler and had struggled with anxiety and depression for several years; in the office, as he grew into an athletic teenager, Adam spoke more frequently about “not fitting in” with his peers and therapeutic focus was placed on building Adam’s sense of himself and fostering his self-confidence and perceived self-competence. His unexpected death was a tremendous shock, and his loved ones – including the clinical team – desperately searched for answers that could help add some understanding to the heartbreaking event.
Around the time of Adam’s death, I was teaching an undergraduate course about the neuroscience of relationships. The class was learning about the brain in love and the importance of social connectedness in overall health. We discussed the reward pathways, libido, notions of synchrony, the meaning of intimacy, prairie voles, dating trends amongst millennials, attachment principles, Harry Harlow’s work with primates, and the dangers associated with loneliness and isolation. Needless to say, my clinical work and my teaching were marked by similarities in theme, themes involving the importance of connection that were worth attending to – particularly as they have heavily influenced my interest in child and adolescent psychiatry since medical school.
In the spring of 2018, these themes were again revisited in the setting of several events. I attended the annual meeting of the Association of Directors of Medical Student Education in Psychiatry (ADMSEP), where Dr. Robert Englander provided an inspiring keynote address on the subject of love as a domain of competence in medical education. He referenced the practice of Metta meditation and how compassion and loving kindness meditation is being studied as a tool for healing and treatment. Certainly, preliminary results from examining the effectiveness of these interventions are promising.1 In June, many of us also were shaken by the deaths of both Kate Spade and Anthony Bourdain, occurring at a time when Centers for Disease Control and Prevention published data indicating rising suicide rates across most of the United States.2
Notably, relationship problems were reported as a major contributor to deaths by suicide. Concurrently, here in Vermont, the 2017 Youth Risk Behavior Survey results were released.Particularly striking were the numbers surrounding the rates of high school LGBT-identified students who thought about suicide (33%) and how they compared to cisgender heterosexual students’ reporting (8%).3 Making sense of these numbers is complicated and many factors appear to be informing the statistics. One can’t help but wonder about the impact of feeling marginalized and isolated on rates of suicide in certain populations. It’s also known that rural Americans have higher suicide rates compared with those living in metropolitan areas, and the lack of social integration and access to mental health care has been examined as a risk factor for these statistics.4,5
As I attempted to search for answers and reconcile national news with my clinical and teaching experiences, I was struck by something that Andrew Solomon eloquently captured in his June 2018 New Yorker article that again touches upon the theme of connection.6 Mr. Solomon writes “modernity is alienating” and about how he receives correspondence from those who struggle with depression. “What is most striking to me is how alone many of them are ... these people are so alone that they are effectively invisible to the rest of us ... many of them describe suicidal feelings,” he noted.
The power of connection in our day-to-day work is undeniable. The influence of human interaction and appreciating one’s unique narrative is a bedrock of clinical care and can unquestionably allow us to better understand individual suffering, deliver optimal care, and combat shame as Hannah Gadsby boldly shared in her recent Netflix comedy special “Nanette.” This shame can drive one to experience earth-shattering depressive episodes and influence thoughts of suicide. “We simply cannot make it on our own,” Ms. Gadsby explains, “we’re humans. We’re to be connected.” Humans are indeed hardwired for connection; isolation and disconnection can lead to significant health problems and are linked with mental health concerns. The former U.S. Surgeon General Vivek H. Murthy, MD, has referred to loneliness as an epidemic, and those with autism may be at increased risk for feeling lonely and isolated.7,8
Synthesizing thoughts about relationships, suicide, loneliness, love, well-being, and autism produces a complicated web of, well, connections. Suicide in the autism population hasn’t been well researched, but one 2016 study revealed sobering numbers about suicide being a leading cause of premature death in people with autism.9 How do these numbers associate with feelings of isolation, wanting to fit in, and troubles talking about emotions – all of which can characterize those with ASD? Data, not surprisingly, support the role of loneliness as a risk factor for the development of depression and suicidal ideation in those with ASD.10 In addition, social-communication challenges, even in the absence of an autism diagnosis, are related to depression and suicidality.11 Another recent study showed a relationship between autistic traits and depression symptoms, an association seemingly linked to being bullied.12 We cannot continue to hold onto the myth that individuals with autism don’t desire relationships and love because it’s these desires and not being able to fulfill them, limited opportunities to engage in meaningful experiences, and feeling different that can lead to negative outcomes.
Talking about suicide is critical in helping to prevent suicide, and there is a need for prevention and screening strategies tailored to specific communities and groups of individuals. How do we go about identifying specific risk factors and address them accordingly, especially in the setting of autism, where risk factors such as behavior change and changes in social interactions can be common features innate to the developmental disorder?
Changes in policy and practice are needed, and all people in crisis deserve supports that appreciate their unique challenges and individual strengths.13 Clinically, being mindful of the consequences of victimization and the power of connectedness and its role in health and well-being is critically important. The Centers for Disease Control and Prevention states that “connectedness is a common thread that weaves together many of the influences of suicidal behavior and has direct relevance for prevention,” and providers should strive to enhance positive connectedness between persons, between individuals, families and community organizations, and among organizations and social institutions.14
Spend time with patients asking about their relationships, desires, and satisfaction with social connections. Ask about loneliness and feelings of rejection while communicating to marginalized individuals that they matter. Finally, appreciate the benefits of safety planning.15 Developing a tailored safety plan with someone who is endorsing suicidal thinking, making follow-up connections (i.e., a telephone call), communicating concern, and instilling hope can save lives.
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic. Email him at [email protected].
References
1. Harv Rev Psychiatry. 2018 Jul/Aug;26(4):201-15.
2. MMWR Morb Mortal Wkly Rep. 2018 Jun 8;67(22):617-24.
3. www.healthvermont.gov/YRBS
4. MMWR Surveill Summ. 2017 Oct;66(18):1-16.
5. JAMA Pediatr. 2015 May;169(5):466-73.
6. “Anthony Bourdain, Kate Spade, and the Preventable Tragedies of Suicide,” By Anthony Solomon, The New Yorker. Jun 8, 2018.
7. “Work and the Loneliness Epidemic,” By Vivek H. Murthy, Harvard Business Review. Sep 28, 2017.
8. Child Dev. 2000 Mar-Apr;71(2):447-56.
9. Br J Psychiatry. 2016 Mar;208(3):232-8.
10. Depress Anxiety. 2018 Jul;35(7):648-57.
11. J Am Acad Child Adolesc Psychiatry. 2018 May;57(5):313-20.
12. JAMA Psychiatry. 2018 Aug 1;75(8):835-43.
13. The Lancet Psychiatry. 2017 Jun;4(6):e11.
14. “Promoting Individual, Family, and Community Connectedness to Prevent Suicidal Behavior,” Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, www.cdc.gov/injury.
15. JAMA Psychiatry. 2018 Jul 11. doi: 10.1001/jamapsychiatry.2018.1776.
Over the past several months, I’ve found myself increasingly reflective on the intersection of culture, relationships, and my professional work with those who have an autism spectrum disorder. Last winter, an adolescent boy treated by myself and other providers died by suicide. Adam (name changed) had been diagnosed with autism as a toddler and had struggled with anxiety and depression for several years; in the office, as he grew into an athletic teenager, Adam spoke more frequently about “not fitting in” with his peers and therapeutic focus was placed on building Adam’s sense of himself and fostering his self-confidence and perceived self-competence. His unexpected death was a tremendous shock, and his loved ones – including the clinical team – desperately searched for answers that could help add some understanding to the heartbreaking event.
Around the time of Adam’s death, I was teaching an undergraduate course about the neuroscience of relationships. The class was learning about the brain in love and the importance of social connectedness in overall health. We discussed the reward pathways, libido, notions of synchrony, the meaning of intimacy, prairie voles, dating trends amongst millennials, attachment principles, Harry Harlow’s work with primates, and the dangers associated with loneliness and isolation. Needless to say, my clinical work and my teaching were marked by similarities in theme, themes involving the importance of connection that were worth attending to – particularly as they have heavily influenced my interest in child and adolescent psychiatry since medical school.
In the spring of 2018, these themes were again revisited in the setting of several events. I attended the annual meeting of the Association of Directors of Medical Student Education in Psychiatry (ADMSEP), where Dr. Robert Englander provided an inspiring keynote address on the subject of love as a domain of competence in medical education. He referenced the practice of Metta meditation and how compassion and loving kindness meditation is being studied as a tool for healing and treatment. Certainly, preliminary results from examining the effectiveness of these interventions are promising.1 In June, many of us also were shaken by the deaths of both Kate Spade and Anthony Bourdain, occurring at a time when Centers for Disease Control and Prevention published data indicating rising suicide rates across most of the United States.2
Notably, relationship problems were reported as a major contributor to deaths by suicide. Concurrently, here in Vermont, the 2017 Youth Risk Behavior Survey results were released.Particularly striking were the numbers surrounding the rates of high school LGBT-identified students who thought about suicide (33%) and how they compared to cisgender heterosexual students’ reporting (8%).3 Making sense of these numbers is complicated and many factors appear to be informing the statistics. One can’t help but wonder about the impact of feeling marginalized and isolated on rates of suicide in certain populations. It’s also known that rural Americans have higher suicide rates compared with those living in metropolitan areas, and the lack of social integration and access to mental health care has been examined as a risk factor for these statistics.4,5
As I attempted to search for answers and reconcile national news with my clinical and teaching experiences, I was struck by something that Andrew Solomon eloquently captured in his June 2018 New Yorker article that again touches upon the theme of connection.6 Mr. Solomon writes “modernity is alienating” and about how he receives correspondence from those who struggle with depression. “What is most striking to me is how alone many of them are ... these people are so alone that they are effectively invisible to the rest of us ... many of them describe suicidal feelings,” he noted.
The power of connection in our day-to-day work is undeniable. The influence of human interaction and appreciating one’s unique narrative is a bedrock of clinical care and can unquestionably allow us to better understand individual suffering, deliver optimal care, and combat shame as Hannah Gadsby boldly shared in her recent Netflix comedy special “Nanette.” This shame can drive one to experience earth-shattering depressive episodes and influence thoughts of suicide. “We simply cannot make it on our own,” Ms. Gadsby explains, “we’re humans. We’re to be connected.” Humans are indeed hardwired for connection; isolation and disconnection can lead to significant health problems and are linked with mental health concerns. The former U.S. Surgeon General Vivek H. Murthy, MD, has referred to loneliness as an epidemic, and those with autism may be at increased risk for feeling lonely and isolated.7,8
Synthesizing thoughts about relationships, suicide, loneliness, love, well-being, and autism produces a complicated web of, well, connections. Suicide in the autism population hasn’t been well researched, but one 2016 study revealed sobering numbers about suicide being a leading cause of premature death in people with autism.9 How do these numbers associate with feelings of isolation, wanting to fit in, and troubles talking about emotions – all of which can characterize those with ASD? Data, not surprisingly, support the role of loneliness as a risk factor for the development of depression and suicidal ideation in those with ASD.10 In addition, social-communication challenges, even in the absence of an autism diagnosis, are related to depression and suicidality.11 Another recent study showed a relationship between autistic traits and depression symptoms, an association seemingly linked to being bullied.12 We cannot continue to hold onto the myth that individuals with autism don’t desire relationships and love because it’s these desires and not being able to fulfill them, limited opportunities to engage in meaningful experiences, and feeling different that can lead to negative outcomes.
Talking about suicide is critical in helping to prevent suicide, and there is a need for prevention and screening strategies tailored to specific communities and groups of individuals. How do we go about identifying specific risk factors and address them accordingly, especially in the setting of autism, where risk factors such as behavior change and changes in social interactions can be common features innate to the developmental disorder?
Changes in policy and practice are needed, and all people in crisis deserve supports that appreciate their unique challenges and individual strengths.13 Clinically, being mindful of the consequences of victimization and the power of connectedness and its role in health and well-being is critically important. The Centers for Disease Control and Prevention states that “connectedness is a common thread that weaves together many of the influences of suicidal behavior and has direct relevance for prevention,” and providers should strive to enhance positive connectedness between persons, between individuals, families and community organizations, and among organizations and social institutions.14
Spend time with patients asking about their relationships, desires, and satisfaction with social connections. Ask about loneliness and feelings of rejection while communicating to marginalized individuals that they matter. Finally, appreciate the benefits of safety planning.15 Developing a tailored safety plan with someone who is endorsing suicidal thinking, making follow-up connections (i.e., a telephone call), communicating concern, and instilling hope can save lives.
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic. Email him at [email protected].
References
1. Harv Rev Psychiatry. 2018 Jul/Aug;26(4):201-15.
2. MMWR Morb Mortal Wkly Rep. 2018 Jun 8;67(22):617-24.
3. www.healthvermont.gov/YRBS
4. MMWR Surveill Summ. 2017 Oct;66(18):1-16.
5. JAMA Pediatr. 2015 May;169(5):466-73.
6. “Anthony Bourdain, Kate Spade, and the Preventable Tragedies of Suicide,” By Anthony Solomon, The New Yorker. Jun 8, 2018.
7. “Work and the Loneliness Epidemic,” By Vivek H. Murthy, Harvard Business Review. Sep 28, 2017.
8. Child Dev. 2000 Mar-Apr;71(2):447-56.
9. Br J Psychiatry. 2016 Mar;208(3):232-8.
10. Depress Anxiety. 2018 Jul;35(7):648-57.
11. J Am Acad Child Adolesc Psychiatry. 2018 May;57(5):313-20.
12. JAMA Psychiatry. 2018 Aug 1;75(8):835-43.
13. The Lancet Psychiatry. 2017 Jun;4(6):e11.
14. “Promoting Individual, Family, and Community Connectedness to Prevent Suicidal Behavior,” Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, www.cdc.gov/injury.
15. JAMA Psychiatry. 2018 Jul 11. doi: 10.1001/jamapsychiatry.2018.1776.
Over the past several months, I’ve found myself increasingly reflective on the intersection of culture, relationships, and my professional work with those who have an autism spectrum disorder. Last winter, an adolescent boy treated by myself and other providers died by suicide. Adam (name changed) had been diagnosed with autism as a toddler and had struggled with anxiety and depression for several years; in the office, as he grew into an athletic teenager, Adam spoke more frequently about “not fitting in” with his peers and therapeutic focus was placed on building Adam’s sense of himself and fostering his self-confidence and perceived self-competence. His unexpected death was a tremendous shock, and his loved ones – including the clinical team – desperately searched for answers that could help add some understanding to the heartbreaking event.
Around the time of Adam’s death, I was teaching an undergraduate course about the neuroscience of relationships. The class was learning about the brain in love and the importance of social connectedness in overall health. We discussed the reward pathways, libido, notions of synchrony, the meaning of intimacy, prairie voles, dating trends amongst millennials, attachment principles, Harry Harlow’s work with primates, and the dangers associated with loneliness and isolation. Needless to say, my clinical work and my teaching were marked by similarities in theme, themes involving the importance of connection that were worth attending to – particularly as they have heavily influenced my interest in child and adolescent psychiatry since medical school.
In the spring of 2018, these themes were again revisited in the setting of several events. I attended the annual meeting of the Association of Directors of Medical Student Education in Psychiatry (ADMSEP), where Dr. Robert Englander provided an inspiring keynote address on the subject of love as a domain of competence in medical education. He referenced the practice of Metta meditation and how compassion and loving kindness meditation is being studied as a tool for healing and treatment. Certainly, preliminary results from examining the effectiveness of these interventions are promising.1 In June, many of us also were shaken by the deaths of both Kate Spade and Anthony Bourdain, occurring at a time when Centers for Disease Control and Prevention published data indicating rising suicide rates across most of the United States.2
Notably, relationship problems were reported as a major contributor to deaths by suicide. Concurrently, here in Vermont, the 2017 Youth Risk Behavior Survey results were released.Particularly striking were the numbers surrounding the rates of high school LGBT-identified students who thought about suicide (33%) and how they compared to cisgender heterosexual students’ reporting (8%).3 Making sense of these numbers is complicated and many factors appear to be informing the statistics. One can’t help but wonder about the impact of feeling marginalized and isolated on rates of suicide in certain populations. It’s also known that rural Americans have higher suicide rates compared with those living in metropolitan areas, and the lack of social integration and access to mental health care has been examined as a risk factor for these statistics.4,5
As I attempted to search for answers and reconcile national news with my clinical and teaching experiences, I was struck by something that Andrew Solomon eloquently captured in his June 2018 New Yorker article that again touches upon the theme of connection.6 Mr. Solomon writes “modernity is alienating” and about how he receives correspondence from those who struggle with depression. “What is most striking to me is how alone many of them are ... these people are so alone that they are effectively invisible to the rest of us ... many of them describe suicidal feelings,” he noted.
The power of connection in our day-to-day work is undeniable. The influence of human interaction and appreciating one’s unique narrative is a bedrock of clinical care and can unquestionably allow us to better understand individual suffering, deliver optimal care, and combat shame as Hannah Gadsby boldly shared in her recent Netflix comedy special “Nanette.” This shame can drive one to experience earth-shattering depressive episodes and influence thoughts of suicide. “We simply cannot make it on our own,” Ms. Gadsby explains, “we’re humans. We’re to be connected.” Humans are indeed hardwired for connection; isolation and disconnection can lead to significant health problems and are linked with mental health concerns. The former U.S. Surgeon General Vivek H. Murthy, MD, has referred to loneliness as an epidemic, and those with autism may be at increased risk for feeling lonely and isolated.7,8
Synthesizing thoughts about relationships, suicide, loneliness, love, well-being, and autism produces a complicated web of, well, connections. Suicide in the autism population hasn’t been well researched, but one 2016 study revealed sobering numbers about suicide being a leading cause of premature death in people with autism.9 How do these numbers associate with feelings of isolation, wanting to fit in, and troubles talking about emotions – all of which can characterize those with ASD? Data, not surprisingly, support the role of loneliness as a risk factor for the development of depression and suicidal ideation in those with ASD.10 In addition, social-communication challenges, even in the absence of an autism diagnosis, are related to depression and suicidality.11 Another recent study showed a relationship between autistic traits and depression symptoms, an association seemingly linked to being bullied.12 We cannot continue to hold onto the myth that individuals with autism don’t desire relationships and love because it’s these desires and not being able to fulfill them, limited opportunities to engage in meaningful experiences, and feeling different that can lead to negative outcomes.
Talking about suicide is critical in helping to prevent suicide, and there is a need for prevention and screening strategies tailored to specific communities and groups of individuals. How do we go about identifying specific risk factors and address them accordingly, especially in the setting of autism, where risk factors such as behavior change and changes in social interactions can be common features innate to the developmental disorder?
Changes in policy and practice are needed, and all people in crisis deserve supports that appreciate their unique challenges and individual strengths.13 Clinically, being mindful of the consequences of victimization and the power of connectedness and its role in health and well-being is critically important. The Centers for Disease Control and Prevention states that “connectedness is a common thread that weaves together many of the influences of suicidal behavior and has direct relevance for prevention,” and providers should strive to enhance positive connectedness between persons, between individuals, families and community organizations, and among organizations and social institutions.14
Spend time with patients asking about their relationships, desires, and satisfaction with social connections. Ask about loneliness and feelings of rejection while communicating to marginalized individuals that they matter. Finally, appreciate the benefits of safety planning.15 Developing a tailored safety plan with someone who is endorsing suicidal thinking, making follow-up connections (i.e., a telephone call), communicating concern, and instilling hope can save lives.
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic. Email him at [email protected].
References
1. Harv Rev Psychiatry. 2018 Jul/Aug;26(4):201-15.
2. MMWR Morb Mortal Wkly Rep. 2018 Jun 8;67(22):617-24.
3. www.healthvermont.gov/YRBS
4. MMWR Surveill Summ. 2017 Oct;66(18):1-16.
5. JAMA Pediatr. 2015 May;169(5):466-73.
6. “Anthony Bourdain, Kate Spade, and the Preventable Tragedies of Suicide,” By Anthony Solomon, The New Yorker. Jun 8, 2018.
7. “Work and the Loneliness Epidemic,” By Vivek H. Murthy, Harvard Business Review. Sep 28, 2017.
8. Child Dev. 2000 Mar-Apr;71(2):447-56.
9. Br J Psychiatry. 2016 Mar;208(3):232-8.
10. Depress Anxiety. 2018 Jul;35(7):648-57.
11. J Am Acad Child Adolesc Psychiatry. 2018 May;57(5):313-20.
12. JAMA Psychiatry. 2018 Aug 1;75(8):835-43.
13. The Lancet Psychiatry. 2017 Jun;4(6):e11.
14. “Promoting Individual, Family, and Community Connectedness to Prevent Suicidal Behavior,” Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, www.cdc.gov/injury.
15. JAMA Psychiatry. 2018 Jul 11. doi: 10.1001/jamapsychiatry.2018.1776.
Consider the siblings
Robert is a 5-year-old boy who presents for an autism diagnostic evaluation accompanied by his parents, who report longstanding concerns about their son’s communication difficulties. Robert has an older brother who has been diagnosed with an autism spectrum disorder (ASD). Robert’s caregivers have noticed his tendency to “copy cat” others and often repeat phrases from television or movies. Robert and his family provided additional history and, after a multidisciplinary evaluation, he was diagnosed as fitting the criteria for ASD. Our team spoke with Robert’s parents about their impressions and recommendations and further explored the family history and ways in which the family functions. Robert lives with his parents and four siblings (one older and three younger, including a set of fraternal twins), most of whom display language impairments and difficulties with emotional regulation, as well. Robert’s mother also discloses that she is pregnant again. “Where do we go from here?” Robert’s mother wonders. “Our family is already so affected by autism, should I be worried about the other children?”
Discussion
It’s well established that genetic factors play a significant role in the etiology of autism spectrum disorders, other neurodevelopmental disorders, and a vast array of mental health problems. Although quite complicated and multifactorial, heritability estimates garnered from twin studies for autism range up to well above 50%1, and although finding specific genetic causes of nonsyndromic autism is the exception to the rule, chromosomal microarray analysis (CMA) is recommended as a first-line genetic test for those with autism. Recent literature has shown that molecular diagnoses of ASD are found in about 9% of the population studied2, and families should be aware that genetic testing can potentially help make decisions about clinical management and can inform discussions about recurrence risk.
Families should be made aware that sibling recurrence rates of autism have been found to be around 20 times higher than the prevalence within the general population3. Certainly having one child with autism can afford a significant risk for parents having another child with the same disorder, and researchers are learning more about the influence of gender on such risk4. Curiously, siblings born after an older sister with autism seem to have a higher risk of ASD than if they were born after an older brother with autism. The authors of this study note, however, that even for those with the highest risk (younger brothers with an older sister with autism had about a 17% probability of recurrence), odds are they will be unaffected by autism. Complicating matters is the notion of the broad autism phenotype (BAP – denoting those who may have features of autism but do not reach diagnostic threshold) with literature indicating at least one BAP trait was found in about 50% of family members of those with ASD5.
In addition, autism also may share genetic vulnerabilities with other conditions – parental psychiatric diagnoses have been found to increase the risk for ASD in their children, and ASD frequently co-occurs with a constellation of other disorders – including anxiety disorders, intellectual disabilities, ADHD, and learning problems. This information can be helpful to clinicians when they speak with parents about the complicated nature of psychiatric and developmental disorders, and how such disorders can affect the family not only biologically, but through dynamic environmental means, as well. , including parents and siblings6. Data clearly indicate that, if a child carries an autism diagnosis, engaging family in family-based treatment, prevention, surveillance/screening, and general supportive interventions are critical in promoting positive outcomes.
Children and adolescents with ASD are a remarkably heterogeneous group with variable family dynamics; clinically, it’s not uncommon to meet parents from all backgrounds who speak eloquently about the stress they face raising a child with any neurodevelopmental disorder. This stress has been well documented in several scientific articles over the past decade (for mothers more so than fathers) but other family members (for example, typically developing siblings) undoubtedly experience similar stress, but this has been less robustly researched. Literature has, in fact, revealed that children who develop typically and who reside with a sibling who has a disability are more likely (compared with siblings living with other typically developing siblings) to have problems related to interpersonal relationships, school functioning, and use of leisure time7. Undeniably, complicated interactions with one’s functional profile, the quality of a sibling’s symptoms, parental stress, and other variables (parental marital status, birth order, presence of parental depression, available sources of support, etc.) are noted, and clearly, autism’s effects can extend far beyond the “identified patient.”
It’s important to note, however, that not all effects are negative. Siblings can demonstrate positive adjustments when growing up with a brother or sister who has autism. While siblings encounter unique demands (missing out on certain outings, feeling embarrassed by a brother’s social behaviors, having to “take care” of their brother, “why can’t we be a normal family?”), these demands can produce benefits, and parents should be aware that negative effects on siblings are far from inevitable. Siblings actually may show increased empathy, more sophisticated coping skills, and an advanced appreciation for those with developmental challenges, compared with most of their peers. Typically developing siblings can serve not only as a social and play partner for their family member with ASD (fostering social competencies), but also the individual with ASD can serve a positive role in influencing the development of those without ASD8.
All things considered, talking with families about the impact of autism on parents and siblings can be complicated but should focus on the positives while being realistic about potential challenges. It is important to inform families about the risk of recurrence and about the stress that autism can create on siblings while you are assessing a family’s functioning and care-giving burdens. Ultimately, this can help you determine how to offer them the most appropriate, evidence-based, and family-focused care.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic. Email him at [email protected].
References
1. J Child Psychol Psychiatry. 2016 May;57(5):585-95.
2. JAMA. 2015;314(9):895-903.
3. Child Adolesc Psychiatr Clin N Am. 2017 Jul;26(3):555-70.
4. (JAMA Pediatr. 2017 Sep 25. doi: 10.1001/jamapediatrics.2017.2832).
5. J Autism Dev Disord. 2007 Mar; 37(3):523-36.
6. JAMA Psychiatry. 2016;73(6):622-9.
7. Pediatrics. 2013. doi: 10.1542/peds.2013-0644.
Robert is a 5-year-old boy who presents for an autism diagnostic evaluation accompanied by his parents, who report longstanding concerns about their son’s communication difficulties. Robert has an older brother who has been diagnosed with an autism spectrum disorder (ASD). Robert’s caregivers have noticed his tendency to “copy cat” others and often repeat phrases from television or movies. Robert and his family provided additional history and, after a multidisciplinary evaluation, he was diagnosed as fitting the criteria for ASD. Our team spoke with Robert’s parents about their impressions and recommendations and further explored the family history and ways in which the family functions. Robert lives with his parents and four siblings (one older and three younger, including a set of fraternal twins), most of whom display language impairments and difficulties with emotional regulation, as well. Robert’s mother also discloses that she is pregnant again. “Where do we go from here?” Robert’s mother wonders. “Our family is already so affected by autism, should I be worried about the other children?”
Discussion
It’s well established that genetic factors play a significant role in the etiology of autism spectrum disorders, other neurodevelopmental disorders, and a vast array of mental health problems. Although quite complicated and multifactorial, heritability estimates garnered from twin studies for autism range up to well above 50%1, and although finding specific genetic causes of nonsyndromic autism is the exception to the rule, chromosomal microarray analysis (CMA) is recommended as a first-line genetic test for those with autism. Recent literature has shown that molecular diagnoses of ASD are found in about 9% of the population studied2, and families should be aware that genetic testing can potentially help make decisions about clinical management and can inform discussions about recurrence risk.
Families should be made aware that sibling recurrence rates of autism have been found to be around 20 times higher than the prevalence within the general population3. Certainly having one child with autism can afford a significant risk for parents having another child with the same disorder, and researchers are learning more about the influence of gender on such risk4. Curiously, siblings born after an older sister with autism seem to have a higher risk of ASD than if they were born after an older brother with autism. The authors of this study note, however, that even for those with the highest risk (younger brothers with an older sister with autism had about a 17% probability of recurrence), odds are they will be unaffected by autism. Complicating matters is the notion of the broad autism phenotype (BAP – denoting those who may have features of autism but do not reach diagnostic threshold) with literature indicating at least one BAP trait was found in about 50% of family members of those with ASD5.
In addition, autism also may share genetic vulnerabilities with other conditions – parental psychiatric diagnoses have been found to increase the risk for ASD in their children, and ASD frequently co-occurs with a constellation of other disorders – including anxiety disorders, intellectual disabilities, ADHD, and learning problems. This information can be helpful to clinicians when they speak with parents about the complicated nature of psychiatric and developmental disorders, and how such disorders can affect the family not only biologically, but through dynamic environmental means, as well. , including parents and siblings6. Data clearly indicate that, if a child carries an autism diagnosis, engaging family in family-based treatment, prevention, surveillance/screening, and general supportive interventions are critical in promoting positive outcomes.
Children and adolescents with ASD are a remarkably heterogeneous group with variable family dynamics; clinically, it’s not uncommon to meet parents from all backgrounds who speak eloquently about the stress they face raising a child with any neurodevelopmental disorder. This stress has been well documented in several scientific articles over the past decade (for mothers more so than fathers) but other family members (for example, typically developing siblings) undoubtedly experience similar stress, but this has been less robustly researched. Literature has, in fact, revealed that children who develop typically and who reside with a sibling who has a disability are more likely (compared with siblings living with other typically developing siblings) to have problems related to interpersonal relationships, school functioning, and use of leisure time7. Undeniably, complicated interactions with one’s functional profile, the quality of a sibling’s symptoms, parental stress, and other variables (parental marital status, birth order, presence of parental depression, available sources of support, etc.) are noted, and clearly, autism’s effects can extend far beyond the “identified patient.”
It’s important to note, however, that not all effects are negative. Siblings can demonstrate positive adjustments when growing up with a brother or sister who has autism. While siblings encounter unique demands (missing out on certain outings, feeling embarrassed by a brother’s social behaviors, having to “take care” of their brother, “why can’t we be a normal family?”), these demands can produce benefits, and parents should be aware that negative effects on siblings are far from inevitable. Siblings actually may show increased empathy, more sophisticated coping skills, and an advanced appreciation for those with developmental challenges, compared with most of their peers. Typically developing siblings can serve not only as a social and play partner for their family member with ASD (fostering social competencies), but also the individual with ASD can serve a positive role in influencing the development of those without ASD8.
All things considered, talking with families about the impact of autism on parents and siblings can be complicated but should focus on the positives while being realistic about potential challenges. It is important to inform families about the risk of recurrence and about the stress that autism can create on siblings while you are assessing a family’s functioning and care-giving burdens. Ultimately, this can help you determine how to offer them the most appropriate, evidence-based, and family-focused care.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic. Email him at [email protected].
References
1. J Child Psychol Psychiatry. 2016 May;57(5):585-95.
2. JAMA. 2015;314(9):895-903.
3. Child Adolesc Psychiatr Clin N Am. 2017 Jul;26(3):555-70.
4. (JAMA Pediatr. 2017 Sep 25. doi: 10.1001/jamapediatrics.2017.2832).
5. J Autism Dev Disord. 2007 Mar; 37(3):523-36.
6. JAMA Psychiatry. 2016;73(6):622-9.
7. Pediatrics. 2013. doi: 10.1542/peds.2013-0644.
Robert is a 5-year-old boy who presents for an autism diagnostic evaluation accompanied by his parents, who report longstanding concerns about their son’s communication difficulties. Robert has an older brother who has been diagnosed with an autism spectrum disorder (ASD). Robert’s caregivers have noticed his tendency to “copy cat” others and often repeat phrases from television or movies. Robert and his family provided additional history and, after a multidisciplinary evaluation, he was diagnosed as fitting the criteria for ASD. Our team spoke with Robert’s parents about their impressions and recommendations and further explored the family history and ways in which the family functions. Robert lives with his parents and four siblings (one older and three younger, including a set of fraternal twins), most of whom display language impairments and difficulties with emotional regulation, as well. Robert’s mother also discloses that she is pregnant again. “Where do we go from here?” Robert’s mother wonders. “Our family is already so affected by autism, should I be worried about the other children?”
Discussion
It’s well established that genetic factors play a significant role in the etiology of autism spectrum disorders, other neurodevelopmental disorders, and a vast array of mental health problems. Although quite complicated and multifactorial, heritability estimates garnered from twin studies for autism range up to well above 50%1, and although finding specific genetic causes of nonsyndromic autism is the exception to the rule, chromosomal microarray analysis (CMA) is recommended as a first-line genetic test for those with autism. Recent literature has shown that molecular diagnoses of ASD are found in about 9% of the population studied2, and families should be aware that genetic testing can potentially help make decisions about clinical management and can inform discussions about recurrence risk.
Families should be made aware that sibling recurrence rates of autism have been found to be around 20 times higher than the prevalence within the general population3. Certainly having one child with autism can afford a significant risk for parents having another child with the same disorder, and researchers are learning more about the influence of gender on such risk4. Curiously, siblings born after an older sister with autism seem to have a higher risk of ASD than if they were born after an older brother with autism. The authors of this study note, however, that even for those with the highest risk (younger brothers with an older sister with autism had about a 17% probability of recurrence), odds are they will be unaffected by autism. Complicating matters is the notion of the broad autism phenotype (BAP – denoting those who may have features of autism but do not reach diagnostic threshold) with literature indicating at least one BAP trait was found in about 50% of family members of those with ASD5.
In addition, autism also may share genetic vulnerabilities with other conditions – parental psychiatric diagnoses have been found to increase the risk for ASD in their children, and ASD frequently co-occurs with a constellation of other disorders – including anxiety disorders, intellectual disabilities, ADHD, and learning problems. This information can be helpful to clinicians when they speak with parents about the complicated nature of psychiatric and developmental disorders, and how such disorders can affect the family not only biologically, but through dynamic environmental means, as well. , including parents and siblings6. Data clearly indicate that, if a child carries an autism diagnosis, engaging family in family-based treatment, prevention, surveillance/screening, and general supportive interventions are critical in promoting positive outcomes.
Children and adolescents with ASD are a remarkably heterogeneous group with variable family dynamics; clinically, it’s not uncommon to meet parents from all backgrounds who speak eloquently about the stress they face raising a child with any neurodevelopmental disorder. This stress has been well documented in several scientific articles over the past decade (for mothers more so than fathers) but other family members (for example, typically developing siblings) undoubtedly experience similar stress, but this has been less robustly researched. Literature has, in fact, revealed that children who develop typically and who reside with a sibling who has a disability are more likely (compared with siblings living with other typically developing siblings) to have problems related to interpersonal relationships, school functioning, and use of leisure time7. Undeniably, complicated interactions with one’s functional profile, the quality of a sibling’s symptoms, parental stress, and other variables (parental marital status, birth order, presence of parental depression, available sources of support, etc.) are noted, and clearly, autism’s effects can extend far beyond the “identified patient.”
It’s important to note, however, that not all effects are negative. Siblings can demonstrate positive adjustments when growing up with a brother or sister who has autism. While siblings encounter unique demands (missing out on certain outings, feeling embarrassed by a brother’s social behaviors, having to “take care” of their brother, “why can’t we be a normal family?”), these demands can produce benefits, and parents should be aware that negative effects on siblings are far from inevitable. Siblings actually may show increased empathy, more sophisticated coping skills, and an advanced appreciation for those with developmental challenges, compared with most of their peers. Typically developing siblings can serve not only as a social and play partner for their family member with ASD (fostering social competencies), but also the individual with ASD can serve a positive role in influencing the development of those without ASD8.
All things considered, talking with families about the impact of autism on parents and siblings can be complicated but should focus on the positives while being realistic about potential challenges. It is important to inform families about the risk of recurrence and about the stress that autism can create on siblings while you are assessing a family’s functioning and care-giving burdens. Ultimately, this can help you determine how to offer them the most appropriate, evidence-based, and family-focused care.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic. Email him at [email protected].
References
1. J Child Psychol Psychiatry. 2016 May;57(5):585-95.
2. JAMA. 2015;314(9):895-903.
3. Child Adolesc Psychiatr Clin N Am. 2017 Jul;26(3):555-70.
4. (JAMA Pediatr. 2017 Sep 25. doi: 10.1001/jamapediatrics.2017.2832).
5. J Autism Dev Disord. 2007 Mar; 37(3):523-36.
6. JAMA Psychiatry. 2016;73(6):622-9.
7. Pediatrics. 2013. doi: 10.1542/peds.2013-0644.
The power of interaction – Supporting language and play development
Engaging caregivers in the management and treatment of early childhood developmental challenges is a critical component of effective intervention.1 Family-centered care helps to promote positive outcomes with early intervention (across developmental domains), and there’s increasing evidence that parent-training programs can be effective in promoting skill generalization and targeting core impairments in toddlers with autism.2
Furthermore, a 2014 randomized controlled trial revealed that individual Early Social Interaction (ESI) with home coaching using the SCERTS (Social Communication, Emotional Regulation, and Transactional Support) curriculum was associated with improvement of a range of child outcomes, compared with group ESI. The authors commented on the importance of individualized parent coaching in natural environments as a way to improve social components of communication and receptive language for toddlers with autism.3
For many parents and at-home caregivers, however, engaging in home-based and parent-delivered interventions can be overwhelming and anxiety-provoking, as well as complicated by other barriers (competing responsibilities, cultural beliefs, and so on). Additionally, these interventions can themselves be a source of stress for some families.
Case
Jake is a 3-year-old boy with a history of global developmental delays, who presents with particular struggles: relating his expressive communication, ability to engage peers in an age-appropriate manner, and capacity to self-regulate when frustrated. He and his family participated in an comprehensive autism diagnostic assessment. In reviewing the history and presentation, considerable challenges in the two core symptom domains that characterize an autism spectrum disorder were noted. A diagnosis of autism was provided, and treatment recommendations were discussed. “What can I do at home to help Jake learn?” his mother asked, noting that, with one-on-one attention, he does seem to demonstrate increased responsiveness, less use of echolalic language, and improved eye contact.
Discussion
To complement the autism services that Jake would likely qualify for through an Early Education program, in-home interaction and play to ensure skill development was discussed at length with his mother, who readily acknowledged her own care-giving struggles that, in part, are informed by her own mental health troubles.
We openly explored Jake’s mother’s perceived challenges in engaging with her son at home and developed initial recommendations for interaction that didn’t risk overwhelming her. We impressed upon Jake’s mother that, regardless of a child’s developmental profile, toddlers use play to learn and she can be Jake’s “favorite toy.” After all, “play is really the work of childhood,” as Fred Rogers said.
With all children, back-and-forth interactions serve as the foundation for future development. Using scaffolding techniques, parent support is a primary driver of “how children develop cognitive, language, social-emotional, and higher-level thinking skills.”4 In particular, the quality of parental interaction can influence language development, and, when considering children with autism, there are several recommendations for what parents can do to help build social, play, and communication skills.5 The Hanen Program is a great resource for providers and parents to learn more about parent engagement in early learning, the power of building communication through everyday experiences and attention to responsiveness, and the use of a child’s strengths to help make family interactions more meaningful and enjoyable. Additionally, the 2012 book “An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn” by Sally Rogers, PhD, et al. is an easy-to-read text for parents and caregivers for learning effective and practical strategies for engaging their child with autism.
With Jake and his mother, our team offered the following in-home recommendations:
- Try to keep interaction fun. Be enthusiastic when encouraging Jake’s attempts to communicate.
- Teach Jake song-gesture games. Encourage him to produce routine, predictable gestures to keep the song going (in imitation of mom). Using songs with vowel emphasis is encouraged (for example: Farmer in the Dell with “E I E I OOOOO”).
- Encourage Jake to produce responsive gestures in play and daily routines not involving songs, such as open arms to receive a ball, reaching to mom when about to be tickled, or having his arms up to have his shirt taken off.
- Capitalize on Jake’s natural desires and personal preferences. Activate a wind-up toy, let it deactivate, and then hand it to Jake.
- Initiate a familiar social game with Jake until he expresses pleasure. Then stop the game and wait for him to initiate continuance.
- Adapt the environment so that Jake will need to frequently request objects of assistance to make choices (place favorite toys in clear containers which may be difficult to open so that he must request help).
Clinical pearl
The United States Department of Education recognizes the importance of family engagement in a child’s early years. Their 2015 policy statement notes that “families are their children’s first and most important teachers, advocates, and nurturers. As such, strong family engagement is central – not supplemental – to the success of early childhood systems and programs that promote children’s healthy development, learning, and wellness.”
By recognizing this principle, primary care providers are in a position to talk with parents about how much youth learn through play and regular interaction. This especially holds true for children with autism. Developing in-home strategies to facilitate active engagement, even strategies that may not be a formal component of a home-based intervention program, are instrumental in fostering positive family- and child-based outcomes and wellness.
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic. Email him at [email protected].
References
1. Annu Rev Clin Psychol. 2010;6:447-68.
2. J Autism Dev Disord. 2010 Sep;40(9):1045-56.
3. Pediatrics. 2014 Dec;134(6):1084-93.
4. JAMA Pediatr. 2016 Feb;170(2):112-3.
5. Child Dev. 2012 Sep-Oct;83(5):1762-74.
Engaging caregivers in the management and treatment of early childhood developmental challenges is a critical component of effective intervention.1 Family-centered care helps to promote positive outcomes with early intervention (across developmental domains), and there’s increasing evidence that parent-training programs can be effective in promoting skill generalization and targeting core impairments in toddlers with autism.2
Furthermore, a 2014 randomized controlled trial revealed that individual Early Social Interaction (ESI) with home coaching using the SCERTS (Social Communication, Emotional Regulation, and Transactional Support) curriculum was associated with improvement of a range of child outcomes, compared with group ESI. The authors commented on the importance of individualized parent coaching in natural environments as a way to improve social components of communication and receptive language for toddlers with autism.3
For many parents and at-home caregivers, however, engaging in home-based and parent-delivered interventions can be overwhelming and anxiety-provoking, as well as complicated by other barriers (competing responsibilities, cultural beliefs, and so on). Additionally, these interventions can themselves be a source of stress for some families.
Case
Jake is a 3-year-old boy with a history of global developmental delays, who presents with particular struggles: relating his expressive communication, ability to engage peers in an age-appropriate manner, and capacity to self-regulate when frustrated. He and his family participated in an comprehensive autism diagnostic assessment. In reviewing the history and presentation, considerable challenges in the two core symptom domains that characterize an autism spectrum disorder were noted. A diagnosis of autism was provided, and treatment recommendations were discussed. “What can I do at home to help Jake learn?” his mother asked, noting that, with one-on-one attention, he does seem to demonstrate increased responsiveness, less use of echolalic language, and improved eye contact.
Discussion
To complement the autism services that Jake would likely qualify for through an Early Education program, in-home interaction and play to ensure skill development was discussed at length with his mother, who readily acknowledged her own care-giving struggles that, in part, are informed by her own mental health troubles.
We openly explored Jake’s mother’s perceived challenges in engaging with her son at home and developed initial recommendations for interaction that didn’t risk overwhelming her. We impressed upon Jake’s mother that, regardless of a child’s developmental profile, toddlers use play to learn and she can be Jake’s “favorite toy.” After all, “play is really the work of childhood,” as Fred Rogers said.
With all children, back-and-forth interactions serve as the foundation for future development. Using scaffolding techniques, parent support is a primary driver of “how children develop cognitive, language, social-emotional, and higher-level thinking skills.”4 In particular, the quality of parental interaction can influence language development, and, when considering children with autism, there are several recommendations for what parents can do to help build social, play, and communication skills.5 The Hanen Program is a great resource for providers and parents to learn more about parent engagement in early learning, the power of building communication through everyday experiences and attention to responsiveness, and the use of a child’s strengths to help make family interactions more meaningful and enjoyable. Additionally, the 2012 book “An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn” by Sally Rogers, PhD, et al. is an easy-to-read text for parents and caregivers for learning effective and practical strategies for engaging their child with autism.
With Jake and his mother, our team offered the following in-home recommendations:
- Try to keep interaction fun. Be enthusiastic when encouraging Jake’s attempts to communicate.
- Teach Jake song-gesture games. Encourage him to produce routine, predictable gestures to keep the song going (in imitation of mom). Using songs with vowel emphasis is encouraged (for example: Farmer in the Dell with “E I E I OOOOO”).
- Encourage Jake to produce responsive gestures in play and daily routines not involving songs, such as open arms to receive a ball, reaching to mom when about to be tickled, or having his arms up to have his shirt taken off.
- Capitalize on Jake’s natural desires and personal preferences. Activate a wind-up toy, let it deactivate, and then hand it to Jake.
- Initiate a familiar social game with Jake until he expresses pleasure. Then stop the game and wait for him to initiate continuance.
- Adapt the environment so that Jake will need to frequently request objects of assistance to make choices (place favorite toys in clear containers which may be difficult to open so that he must request help).
Clinical pearl
The United States Department of Education recognizes the importance of family engagement in a child’s early years. Their 2015 policy statement notes that “families are their children’s first and most important teachers, advocates, and nurturers. As such, strong family engagement is central – not supplemental – to the success of early childhood systems and programs that promote children’s healthy development, learning, and wellness.”
By recognizing this principle, primary care providers are in a position to talk with parents about how much youth learn through play and regular interaction. This especially holds true for children with autism. Developing in-home strategies to facilitate active engagement, even strategies that may not be a formal component of a home-based intervention program, are instrumental in fostering positive family- and child-based outcomes and wellness.
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic. Email him at [email protected].
References
1. Annu Rev Clin Psychol. 2010;6:447-68.
2. J Autism Dev Disord. 2010 Sep;40(9):1045-56.
3. Pediatrics. 2014 Dec;134(6):1084-93.
4. JAMA Pediatr. 2016 Feb;170(2):112-3.
5. Child Dev. 2012 Sep-Oct;83(5):1762-74.
Engaging caregivers in the management and treatment of early childhood developmental challenges is a critical component of effective intervention.1 Family-centered care helps to promote positive outcomes with early intervention (across developmental domains), and there’s increasing evidence that parent-training programs can be effective in promoting skill generalization and targeting core impairments in toddlers with autism.2
Furthermore, a 2014 randomized controlled trial revealed that individual Early Social Interaction (ESI) with home coaching using the SCERTS (Social Communication, Emotional Regulation, and Transactional Support) curriculum was associated with improvement of a range of child outcomes, compared with group ESI. The authors commented on the importance of individualized parent coaching in natural environments as a way to improve social components of communication and receptive language for toddlers with autism.3
For many parents and at-home caregivers, however, engaging in home-based and parent-delivered interventions can be overwhelming and anxiety-provoking, as well as complicated by other barriers (competing responsibilities, cultural beliefs, and so on). Additionally, these interventions can themselves be a source of stress for some families.
Case
Jake is a 3-year-old boy with a history of global developmental delays, who presents with particular struggles: relating his expressive communication, ability to engage peers in an age-appropriate manner, and capacity to self-regulate when frustrated. He and his family participated in an comprehensive autism diagnostic assessment. In reviewing the history and presentation, considerable challenges in the two core symptom domains that characterize an autism spectrum disorder were noted. A diagnosis of autism was provided, and treatment recommendations were discussed. “What can I do at home to help Jake learn?” his mother asked, noting that, with one-on-one attention, he does seem to demonstrate increased responsiveness, less use of echolalic language, and improved eye contact.
Discussion
To complement the autism services that Jake would likely qualify for through an Early Education program, in-home interaction and play to ensure skill development was discussed at length with his mother, who readily acknowledged her own care-giving struggles that, in part, are informed by her own mental health troubles.
We openly explored Jake’s mother’s perceived challenges in engaging with her son at home and developed initial recommendations for interaction that didn’t risk overwhelming her. We impressed upon Jake’s mother that, regardless of a child’s developmental profile, toddlers use play to learn and she can be Jake’s “favorite toy.” After all, “play is really the work of childhood,” as Fred Rogers said.
With all children, back-and-forth interactions serve as the foundation for future development. Using scaffolding techniques, parent support is a primary driver of “how children develop cognitive, language, social-emotional, and higher-level thinking skills.”4 In particular, the quality of parental interaction can influence language development, and, when considering children with autism, there are several recommendations for what parents can do to help build social, play, and communication skills.5 The Hanen Program is a great resource for providers and parents to learn more about parent engagement in early learning, the power of building communication through everyday experiences and attention to responsiveness, and the use of a child’s strengths to help make family interactions more meaningful and enjoyable. Additionally, the 2012 book “An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn” by Sally Rogers, PhD, et al. is an easy-to-read text for parents and caregivers for learning effective and practical strategies for engaging their child with autism.
With Jake and his mother, our team offered the following in-home recommendations:
- Try to keep interaction fun. Be enthusiastic when encouraging Jake’s attempts to communicate.
- Teach Jake song-gesture games. Encourage him to produce routine, predictable gestures to keep the song going (in imitation of mom). Using songs with vowel emphasis is encouraged (for example: Farmer in the Dell with “E I E I OOOOO”).
- Encourage Jake to produce responsive gestures in play and daily routines not involving songs, such as open arms to receive a ball, reaching to mom when about to be tickled, or having his arms up to have his shirt taken off.
- Capitalize on Jake’s natural desires and personal preferences. Activate a wind-up toy, let it deactivate, and then hand it to Jake.
- Initiate a familiar social game with Jake until he expresses pleasure. Then stop the game and wait for him to initiate continuance.
- Adapt the environment so that Jake will need to frequently request objects of assistance to make choices (place favorite toys in clear containers which may be difficult to open so that he must request help).
Clinical pearl
The United States Department of Education recognizes the importance of family engagement in a child’s early years. Their 2015 policy statement notes that “families are their children’s first and most important teachers, advocates, and nurturers. As such, strong family engagement is central – not supplemental – to the success of early childhood systems and programs that promote children’s healthy development, learning, and wellness.”
By recognizing this principle, primary care providers are in a position to talk with parents about how much youth learn through play and regular interaction. This especially holds true for children with autism. Developing in-home strategies to facilitate active engagement, even strategies that may not be a formal component of a home-based intervention program, are instrumental in fostering positive family- and child-based outcomes and wellness.
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic. Email him at [email protected].
References
1. Annu Rev Clin Psychol. 2010;6:447-68.
2. J Autism Dev Disord. 2010 Sep;40(9):1045-56.
3. Pediatrics. 2014 Dec;134(6):1084-93.
4. JAMA Pediatr. 2016 Feb;170(2):112-3.
5. Child Dev. 2012 Sep-Oct;83(5):1762-74.
Sensory-related difficulties in children
A Google search of “sensory issues in children” reveals more than 20 million results and a wide range of terminology that can be confusing to parents, providers, and youth themselves. Phenomena such as sensory processing disorder, sensory integration disorder, sensory discrimination disorder, and sensory defensiveness are noted, and autism spectrum disorder (ASD) is a label not uncommonly attached to the former terms.
The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) does not include a discrete diagnosis to apply to children who have sensory differences, (meaning that they have difficulties regulating sensory input and such difficulties affect their ability to successfully relate to the world around them), but these differences are now part of the diagnostic criteria for ASD. The literature indicates that a majority of youth with ASD demonstrate features of sensory overresponsiveness (JAMA Psychiatry. 2015 Aug;72[8]:778-86), and providers should rightfully be concerned about the possibility of autism in a youngster who is presenting with severe negative responses to auditory, visual, and/or tactile stimuli.
Notably, however, even though sensory problems are considered a feature of autism, they are not pathognomonic for the disorder, and most children with these problems are, in fact, not autistic. Children with deficits in their ability to modulate sensory stimuli can present with a wide range of emotional-behavioral problems, including externalizing behaviors and internalizing symptoms manifesting with anxiety, attention challenges, mood dysregulation, and overall poor adaptive functioning. The relationship between sensory issues (both underresponsiveness and overresponsiveness) and psychopathology is rather complicated as sensory dysfunction can exist independent of a psychiatric disorder, be a significant risk factor for the development of the disorder (J Abnorm Child Psychol. 2009 Nov;37[8]:1077-87), and have symptom overlap with the disorder.
All in all, in spite of this complexity, since the 1960’s (Am J Occup Ther. 1964 Jan-Feb;18:6-11), it’s been clear that sensory dysfunction in children is associated with impairments in development, learning, and self-regulation. Parents of these children experience elevated levels of stress (J Child Fam Stud. 2013 Oct 1;22[7]:912-21), and early identification of sensory differences, psychoeducation, and referral for treatment are critical to minimize these impacts and foster positive outcomes.
Case Summary
In gathering a history and administering the Autism Diagnostic Observation Schedule (ADOS), it became clear that Sarah did not present with the social-communicative impairments that characterize ASD, but she did demonstrate repetitive hand flapping, troubles tolerating large social get-togethers, hypersensitivities, and a vulnerability to getting stuck when attempting to transition between activities. It is not uncommon for Sarah to use “fight-and-flight” reactions when faced with internal or external discomfort. Child Behavior Checklist data revealed multi-informant endorsement of clinical range symptoms across broad-band and narrow-band domains. Additionally, the Sensory Profile–2 yielded elevated scores in categories measuring sensory seeking and sensory sensitivity. The Sensory Profile is a standardized tool that uses caregiver and teacher-completed questionnaires to examine a child’s sensory processing abilities and provide data regarding the effect of such sensory processing on functional performance. Integrating all the available data, our team certainly appreciated Sarah’s profound sensory overresponsiveness, and a diagnosis of an unspecified anxiety disorder was provided along with consideration for attention-deficit/hyperactivity disorder (ADHD) (with teacher input needed to further investigate this possibility). The family history revealed anxiety disorders occurring both maternally and paternally. Additionally, Sarah’s mother’s acknowledged having her own similar sensory issues as a child.
Discussion
Associations among anxiety, sensory overresponsiveness, and ADHD are recognized in the literature (Am J Occup Ther. 2009 Jul-Aug;63[4]:433-40) and have implications for treatment. Furthermore, there is evidence that there is a heritable aspect to sensory processing abnormalities, and tactile defensiveness is associated with fearful temperament and anxiety (J Abnorm Child Psychol. 2006 Jun;34[3]:393-407). In Sarah’s case, her intense behavioral response to ordinary sensory stimuli was striking, and she had not yet been referred for an occupational therapy evaluation, which was the primary recommendation to further assess and understand her complicated sensory profile. As one component of a comprehensive treatment plan, an occupational therapist (www.aota.org), by using evidence-based practices in a sensory-integration framework, could be helpful in addressing Sarah’s range of challenges and promoting positive outcomes related to socialization, behavioral regulation, and attention. Occupational therapists, with assistance from other team members, also could work with Sarah and her family on developing relaxation skills and use exposure and response prevention–oriented intervention strategies to address anxieties. Families, however, should be counseled about the limited data on the use of sensory-based therapies (Pediatrics. 2012 Jun;129[6]:1186-9); the use of parent-management training/family coaching should also be a treatment consideration to help promote overall regulatory functioning in the household.
Clinical pearl
When encountering youth with sensory-related challenges, a clinician’s diagnostic considerations should be more than just thinking about the possibility of an autism spectrum disorder. Symptoms of sensory overresponsiveness are associated with other emotional-behavioral conditions, but also can be seen without co-occurring psychopathology. With the latter, however, providers should be mindful that family-related impairments still may be quite noteworthy (J Am Acad Child Adolesc Psychiatry. 2011 Dec;50[12]:1210-9) and associated behavior problems could be attributed incorrectly to other diagnoses (which may lead to the recommendation of ineffective and inappropriate treatments). Much more research is needed to help develop a robust framework for diagnosing and labeling sensory issues in children and studying the efficacy of available intervention strategies.
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic.
A Google search of “sensory issues in children” reveals more than 20 million results and a wide range of terminology that can be confusing to parents, providers, and youth themselves. Phenomena such as sensory processing disorder, sensory integration disorder, sensory discrimination disorder, and sensory defensiveness are noted, and autism spectrum disorder (ASD) is a label not uncommonly attached to the former terms.
The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) does not include a discrete diagnosis to apply to children who have sensory differences, (meaning that they have difficulties regulating sensory input and such difficulties affect their ability to successfully relate to the world around them), but these differences are now part of the diagnostic criteria for ASD. The literature indicates that a majority of youth with ASD demonstrate features of sensory overresponsiveness (JAMA Psychiatry. 2015 Aug;72[8]:778-86), and providers should rightfully be concerned about the possibility of autism in a youngster who is presenting with severe negative responses to auditory, visual, and/or tactile stimuli.
Notably, however, even though sensory problems are considered a feature of autism, they are not pathognomonic for the disorder, and most children with these problems are, in fact, not autistic. Children with deficits in their ability to modulate sensory stimuli can present with a wide range of emotional-behavioral problems, including externalizing behaviors and internalizing symptoms manifesting with anxiety, attention challenges, mood dysregulation, and overall poor adaptive functioning. The relationship between sensory issues (both underresponsiveness and overresponsiveness) and psychopathology is rather complicated as sensory dysfunction can exist independent of a psychiatric disorder, be a significant risk factor for the development of the disorder (J Abnorm Child Psychol. 2009 Nov;37[8]:1077-87), and have symptom overlap with the disorder.
All in all, in spite of this complexity, since the 1960’s (Am J Occup Ther. 1964 Jan-Feb;18:6-11), it’s been clear that sensory dysfunction in children is associated with impairments in development, learning, and self-regulation. Parents of these children experience elevated levels of stress (J Child Fam Stud. 2013 Oct 1;22[7]:912-21), and early identification of sensory differences, psychoeducation, and referral for treatment are critical to minimize these impacts and foster positive outcomes.
Case Summary
In gathering a history and administering the Autism Diagnostic Observation Schedule (ADOS), it became clear that Sarah did not present with the social-communicative impairments that characterize ASD, but she did demonstrate repetitive hand flapping, troubles tolerating large social get-togethers, hypersensitivities, and a vulnerability to getting stuck when attempting to transition between activities. It is not uncommon for Sarah to use “fight-and-flight” reactions when faced with internal or external discomfort. Child Behavior Checklist data revealed multi-informant endorsement of clinical range symptoms across broad-band and narrow-band domains. Additionally, the Sensory Profile–2 yielded elevated scores in categories measuring sensory seeking and sensory sensitivity. The Sensory Profile is a standardized tool that uses caregiver and teacher-completed questionnaires to examine a child’s sensory processing abilities and provide data regarding the effect of such sensory processing on functional performance. Integrating all the available data, our team certainly appreciated Sarah’s profound sensory overresponsiveness, and a diagnosis of an unspecified anxiety disorder was provided along with consideration for attention-deficit/hyperactivity disorder (ADHD) (with teacher input needed to further investigate this possibility). The family history revealed anxiety disorders occurring both maternally and paternally. Additionally, Sarah’s mother’s acknowledged having her own similar sensory issues as a child.
Discussion
Associations among anxiety, sensory overresponsiveness, and ADHD are recognized in the literature (Am J Occup Ther. 2009 Jul-Aug;63[4]:433-40) and have implications for treatment. Furthermore, there is evidence that there is a heritable aspect to sensory processing abnormalities, and tactile defensiveness is associated with fearful temperament and anxiety (J Abnorm Child Psychol. 2006 Jun;34[3]:393-407). In Sarah’s case, her intense behavioral response to ordinary sensory stimuli was striking, and she had not yet been referred for an occupational therapy evaluation, which was the primary recommendation to further assess and understand her complicated sensory profile. As one component of a comprehensive treatment plan, an occupational therapist (www.aota.org), by using evidence-based practices in a sensory-integration framework, could be helpful in addressing Sarah’s range of challenges and promoting positive outcomes related to socialization, behavioral regulation, and attention. Occupational therapists, with assistance from other team members, also could work with Sarah and her family on developing relaxation skills and use exposure and response prevention–oriented intervention strategies to address anxieties. Families, however, should be counseled about the limited data on the use of sensory-based therapies (Pediatrics. 2012 Jun;129[6]:1186-9); the use of parent-management training/family coaching should also be a treatment consideration to help promote overall regulatory functioning in the household.
Clinical pearl
When encountering youth with sensory-related challenges, a clinician’s diagnostic considerations should be more than just thinking about the possibility of an autism spectrum disorder. Symptoms of sensory overresponsiveness are associated with other emotional-behavioral conditions, but also can be seen without co-occurring psychopathology. With the latter, however, providers should be mindful that family-related impairments still may be quite noteworthy (J Am Acad Child Adolesc Psychiatry. 2011 Dec;50[12]:1210-9) and associated behavior problems could be attributed incorrectly to other diagnoses (which may lead to the recommendation of ineffective and inappropriate treatments). Much more research is needed to help develop a robust framework for diagnosing and labeling sensory issues in children and studying the efficacy of available intervention strategies.
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic.
A Google search of “sensory issues in children” reveals more than 20 million results and a wide range of terminology that can be confusing to parents, providers, and youth themselves. Phenomena such as sensory processing disorder, sensory integration disorder, sensory discrimination disorder, and sensory defensiveness are noted, and autism spectrum disorder (ASD) is a label not uncommonly attached to the former terms.
The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) does not include a discrete diagnosis to apply to children who have sensory differences, (meaning that they have difficulties regulating sensory input and such difficulties affect their ability to successfully relate to the world around them), but these differences are now part of the diagnostic criteria for ASD. The literature indicates that a majority of youth with ASD demonstrate features of sensory overresponsiveness (JAMA Psychiatry. 2015 Aug;72[8]:778-86), and providers should rightfully be concerned about the possibility of autism in a youngster who is presenting with severe negative responses to auditory, visual, and/or tactile stimuli.
Notably, however, even though sensory problems are considered a feature of autism, they are not pathognomonic for the disorder, and most children with these problems are, in fact, not autistic. Children with deficits in their ability to modulate sensory stimuli can present with a wide range of emotional-behavioral problems, including externalizing behaviors and internalizing symptoms manifesting with anxiety, attention challenges, mood dysregulation, and overall poor adaptive functioning. The relationship between sensory issues (both underresponsiveness and overresponsiveness) and psychopathology is rather complicated as sensory dysfunction can exist independent of a psychiatric disorder, be a significant risk factor for the development of the disorder (J Abnorm Child Psychol. 2009 Nov;37[8]:1077-87), and have symptom overlap with the disorder.
All in all, in spite of this complexity, since the 1960’s (Am J Occup Ther. 1964 Jan-Feb;18:6-11), it’s been clear that sensory dysfunction in children is associated with impairments in development, learning, and self-regulation. Parents of these children experience elevated levels of stress (J Child Fam Stud. 2013 Oct 1;22[7]:912-21), and early identification of sensory differences, psychoeducation, and referral for treatment are critical to minimize these impacts and foster positive outcomes.
Case Summary
In gathering a history and administering the Autism Diagnostic Observation Schedule (ADOS), it became clear that Sarah did not present with the social-communicative impairments that characterize ASD, but she did demonstrate repetitive hand flapping, troubles tolerating large social get-togethers, hypersensitivities, and a vulnerability to getting stuck when attempting to transition between activities. It is not uncommon for Sarah to use “fight-and-flight” reactions when faced with internal or external discomfort. Child Behavior Checklist data revealed multi-informant endorsement of clinical range symptoms across broad-band and narrow-band domains. Additionally, the Sensory Profile–2 yielded elevated scores in categories measuring sensory seeking and sensory sensitivity. The Sensory Profile is a standardized tool that uses caregiver and teacher-completed questionnaires to examine a child’s sensory processing abilities and provide data regarding the effect of such sensory processing on functional performance. Integrating all the available data, our team certainly appreciated Sarah’s profound sensory overresponsiveness, and a diagnosis of an unspecified anxiety disorder was provided along with consideration for attention-deficit/hyperactivity disorder (ADHD) (with teacher input needed to further investigate this possibility). The family history revealed anxiety disorders occurring both maternally and paternally. Additionally, Sarah’s mother’s acknowledged having her own similar sensory issues as a child.
Discussion
Associations among anxiety, sensory overresponsiveness, and ADHD are recognized in the literature (Am J Occup Ther. 2009 Jul-Aug;63[4]:433-40) and have implications for treatment. Furthermore, there is evidence that there is a heritable aspect to sensory processing abnormalities, and tactile defensiveness is associated with fearful temperament and anxiety (J Abnorm Child Psychol. 2006 Jun;34[3]:393-407). In Sarah’s case, her intense behavioral response to ordinary sensory stimuli was striking, and she had not yet been referred for an occupational therapy evaluation, which was the primary recommendation to further assess and understand her complicated sensory profile. As one component of a comprehensive treatment plan, an occupational therapist (www.aota.org), by using evidence-based practices in a sensory-integration framework, could be helpful in addressing Sarah’s range of challenges and promoting positive outcomes related to socialization, behavioral regulation, and attention. Occupational therapists, with assistance from other team members, also could work with Sarah and her family on developing relaxation skills and use exposure and response prevention–oriented intervention strategies to address anxieties. Families, however, should be counseled about the limited data on the use of sensory-based therapies (Pediatrics. 2012 Jun;129[6]:1186-9); the use of parent-management training/family coaching should also be a treatment consideration to help promote overall regulatory functioning in the household.
Clinical pearl
When encountering youth with sensory-related challenges, a clinician’s diagnostic considerations should be more than just thinking about the possibility of an autism spectrum disorder. Symptoms of sensory overresponsiveness are associated with other emotional-behavioral conditions, but also can be seen without co-occurring psychopathology. With the latter, however, providers should be mindful that family-related impairments still may be quite noteworthy (J Am Acad Child Adolesc Psychiatry. 2011 Dec;50[12]:1210-9) and associated behavior problems could be attributed incorrectly to other diagnoses (which may lead to the recommendation of ineffective and inappropriate treatments). Much more research is needed to help develop a robust framework for diagnosing and labeling sensory issues in children and studying the efficacy of available intervention strategies.
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, Burlington, where he is director of the autism diagnostic clinic.
Autism spectrum disorders in gender-nonconforming youth
Despite the lack of clarity about the exact prevalence in youth, particularly prepubertal youth, it’s clear that an increasing number of children and teenagers are presenting to multidisciplinary clinics for evaluation and management of gender identity issues (Pediatrics. 2012 Mar;129[3]:418-25). Recent literature has indicated that the prevalence of individuals overall identifying as transgender and/or experiencing gender dysphoria is about 0.2%-0.3% of the population (JAMA Pediatr. 2016;170[5]:423-4), while being mindful of the variability in the characteristics of the populations included in certain studies.
Although gender variation, in and of itself, is not a disorder, these youth are a considerably underserved and poorly researched population with specific medical and mental health needs. They are at risk for being victims of abuse and developing a range of mental health struggles, including mood disorders, suicidal thinking, self-harming, and anxiety, possibly because of the stresses they experience socially (family rejection, victimization). In addition to these more discrete psychiatric phenomena, co-occurring autism spectrum disorders (or traits thereof) are increasingly being recognized in transgender youth.
Case summary
Maddie is a 20-year-old college sophomore who presents for an autism diagnostic evaluation after being seen by a mental health colleague for consultation regarding medical treatment associated with female-to-male gender transition. In brief, Maddie reports a longstanding history of feeling “socially overwhelmed.” He is an articulate young adult who shares that he’s frequently uncomfortable in social situations, explaining that he has trouble “reading people,” acknowledging a tendency to become overly focused on the details of others and missing the gestalt of interpersonal interactions. Maddie discloses never having close friendships, and although he identifies as lonely, he doesn’t “understand the appeal of casual social interactions.” Maddie and his mother seek an understanding of such social difficulties, wondering about the possibility of Asperger’s syndrome.
Maddie, whose assigned gender at birth was female, now identifies as male. His mother recalls him to have been a precocious preschooler in terms of language development who had no significant developmental delays and became, per report, increasingly withdrawn in elementary school. Over the years, educators have commented repeatedly on the fact that Maddie has needed to work on his “people skills,” with past providers ascribing such struggles to anxiety and social awkwardness that were thought to inherently accompany gender-variant behaviors and thinking. Maddie socially transitioned from a female to male in grade 11 and began taking prescribed testosterone about 4 years ago.
In the interview, Maddie is a hesitant male-appearing individual whose eye contact and spontaneity are limited. He has a guarded manner, and although he is able to answer questions posed to him, rapport is difficult to establish as he appears interpersonally uncomfortable.
Prior to the visit, Maddie’s mother completed the Social Responsiveness Scales, which revealed elevated scores in the area of Social Communication and Social Motivation. Despite appearing cognitively bright and having an array of academic and creative strengths, Maddie’s troubles forming meaningful relationships are striking. Deficits in social-emotional competence are incommensurate with his suspected cognitive abilities, and although he relates learning social skills from film over the years, he endorses pervasively compromised social-communication aptitudes and enduring functional impairments. “I’m always playing catch-up socially,” he shares, wondering how this will affect him in his nursing career.
Discussion
Maddie and his mother participated in an autism diagnostic evaluation, including the administration of the Autism Diagnostic Interview–Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS). The evaluation revealed a profile of social impairments and inflexible thinking dating back to early childhood that supported a diagnosis of an autism spectrum disorder (ASD). Other diagnoses, including anxiety disorders, a depressive disorder, a social pragmatic communication disorder, and a nonverbal learning disorder, were considered, but ultimately it was concluded that ASD best captured Maddie, who also continued to display features consistent with gender dysphoria.
Over the past 30 years, the relationship between gender-related concerns and ASD has begun to be discussed in the scientific literature, beginning with case reports and more recently with a retrospective chart study that yielded results suggesting that subjects diagnosed with ASD were almost eight times more likely to report gender variance than a nonreferred standardization sample of the Child Behavior Checklist (CBCL) (Transgender Health. 2016 Feb;1[1]:63-8). These results echo those of a prior study showing that 7.8% of individuals presenting for an evaluation in a Dutch gender clinic had an ASD diagnosis (J Autism Dev Disord. 2010 Aug;40[8]:930-6).
With the individual prevalences for ASD and gender dysphoria taken into account, these numbers suggest that the prevalence of ASD in gender-dysphoric youth is about four times higher than that found in the general population (Sex Med Rev. 2016;4:3e14). These data raise questions regarding potential shared etiology and the neurobiology between a disorder of social communication and gender identity–related issues; however, to date, despite several theories attempting to explain the connection (the notion of an “extreme male brain,” role of sex hormones, etc.), the relationship remains puzzling. Some have argued that the rigid thinking that can characterize ASD may lead those individuals who display any gender-variant behaviors to automatically identify as the gender opposite their biologic gender, even though they aren’t necessarily experiencing frank gender dysphoria or a core gender identity that is firmly discordant from their anatomical sex. Thinking about the relationship from another perspective, perhaps those with ASD are less aware of the social constructs of gender and are able to express their gender identity (whether it be crossgender or cisgender) more freely and without the worry of how they may be perceived by others. Undoubtedly, a complex interplay between ASD and gender dysphoria/gender-nonconforming behavior is suspected, and more quality research is needed – research that, at a minimum, is informed by the use of representative sample groups drawn from all developmental periods and well-defined diagnostic constructs.
Clinical pearl
Maddie, a transgender man, received a diagnosis of an autism spectrum disorder as a young adult – a full 16 years after the median age of diagnosis (MMWR Surveill Summ. 2016;65[3]:1-23).
The case illustrates some of the difficulties of attempting to parse out the cause of social impairments in an individual who also may have other phenomena that influence interpersonal functioning (attention-deficit/hyperactivity disorder, anxiety, gender dysphoria, etc.) in a developmental manner. Diagnostic “overshadowing” (mistakenly attributing symptoms to a particular condition and paying little attention to other possibilities) is not uncommon in youth with ASD and co-occurring conditions. Given the overlap between gender-nonconforming youth, individuals with gender dysphoria, and ASD, primary care providers may opt to incorporate mental health professionals familiar with ASD into the assessment and care of these children and adolescents. Getting a complete developmental history and paying attention to the possibility of early red flags for ASD can help to elucidate diagnostic possibilities and inform treatment planning. If a co-occurring diagnosis is confirmed, implementation of evidence-based interventions that are provided through the lens of ASD can help to minimize the risk of developing other co-occurring pathology, build resilience, alleviate social impairment, and foster self-advocacy skills in this very vulnerable population. Regardless of whether gender-variant youth and adolescents have an autistic disorder, mental health providers can have an integral role in assisting these individuals and their families to navigate a complicated system of care, address gender dysphoria, and promote healthy identity development (J Am Acad Child Adolesc Psychiatry. 2016 Jun;55[6]:441-3).
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, where he is director of the autism diagnostic clinic.
Despite the lack of clarity about the exact prevalence in youth, particularly prepubertal youth, it’s clear that an increasing number of children and teenagers are presenting to multidisciplinary clinics for evaluation and management of gender identity issues (Pediatrics. 2012 Mar;129[3]:418-25). Recent literature has indicated that the prevalence of individuals overall identifying as transgender and/or experiencing gender dysphoria is about 0.2%-0.3% of the population (JAMA Pediatr. 2016;170[5]:423-4), while being mindful of the variability in the characteristics of the populations included in certain studies.
Although gender variation, in and of itself, is not a disorder, these youth are a considerably underserved and poorly researched population with specific medical and mental health needs. They are at risk for being victims of abuse and developing a range of mental health struggles, including mood disorders, suicidal thinking, self-harming, and anxiety, possibly because of the stresses they experience socially (family rejection, victimization). In addition to these more discrete psychiatric phenomena, co-occurring autism spectrum disorders (or traits thereof) are increasingly being recognized in transgender youth.
Case summary
Maddie is a 20-year-old college sophomore who presents for an autism diagnostic evaluation after being seen by a mental health colleague for consultation regarding medical treatment associated with female-to-male gender transition. In brief, Maddie reports a longstanding history of feeling “socially overwhelmed.” He is an articulate young adult who shares that he’s frequently uncomfortable in social situations, explaining that he has trouble “reading people,” acknowledging a tendency to become overly focused on the details of others and missing the gestalt of interpersonal interactions. Maddie discloses never having close friendships, and although he identifies as lonely, he doesn’t “understand the appeal of casual social interactions.” Maddie and his mother seek an understanding of such social difficulties, wondering about the possibility of Asperger’s syndrome.
Maddie, whose assigned gender at birth was female, now identifies as male. His mother recalls him to have been a precocious preschooler in terms of language development who had no significant developmental delays and became, per report, increasingly withdrawn in elementary school. Over the years, educators have commented repeatedly on the fact that Maddie has needed to work on his “people skills,” with past providers ascribing such struggles to anxiety and social awkwardness that were thought to inherently accompany gender-variant behaviors and thinking. Maddie socially transitioned from a female to male in grade 11 and began taking prescribed testosterone about 4 years ago.
In the interview, Maddie is a hesitant male-appearing individual whose eye contact and spontaneity are limited. He has a guarded manner, and although he is able to answer questions posed to him, rapport is difficult to establish as he appears interpersonally uncomfortable.
Prior to the visit, Maddie’s mother completed the Social Responsiveness Scales, which revealed elevated scores in the area of Social Communication and Social Motivation. Despite appearing cognitively bright and having an array of academic and creative strengths, Maddie’s troubles forming meaningful relationships are striking. Deficits in social-emotional competence are incommensurate with his suspected cognitive abilities, and although he relates learning social skills from film over the years, he endorses pervasively compromised social-communication aptitudes and enduring functional impairments. “I’m always playing catch-up socially,” he shares, wondering how this will affect him in his nursing career.
Discussion
Maddie and his mother participated in an autism diagnostic evaluation, including the administration of the Autism Diagnostic Interview–Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS). The evaluation revealed a profile of social impairments and inflexible thinking dating back to early childhood that supported a diagnosis of an autism spectrum disorder (ASD). Other diagnoses, including anxiety disorders, a depressive disorder, a social pragmatic communication disorder, and a nonverbal learning disorder, were considered, but ultimately it was concluded that ASD best captured Maddie, who also continued to display features consistent with gender dysphoria.
Over the past 30 years, the relationship between gender-related concerns and ASD has begun to be discussed in the scientific literature, beginning with case reports and more recently with a retrospective chart study that yielded results suggesting that subjects diagnosed with ASD were almost eight times more likely to report gender variance than a nonreferred standardization sample of the Child Behavior Checklist (CBCL) (Transgender Health. 2016 Feb;1[1]:63-8). These results echo those of a prior study showing that 7.8% of individuals presenting for an evaluation in a Dutch gender clinic had an ASD diagnosis (J Autism Dev Disord. 2010 Aug;40[8]:930-6).
With the individual prevalences for ASD and gender dysphoria taken into account, these numbers suggest that the prevalence of ASD in gender-dysphoric youth is about four times higher than that found in the general population (Sex Med Rev. 2016;4:3e14). These data raise questions regarding potential shared etiology and the neurobiology between a disorder of social communication and gender identity–related issues; however, to date, despite several theories attempting to explain the connection (the notion of an “extreme male brain,” role of sex hormones, etc.), the relationship remains puzzling. Some have argued that the rigid thinking that can characterize ASD may lead those individuals who display any gender-variant behaviors to automatically identify as the gender opposite their biologic gender, even though they aren’t necessarily experiencing frank gender dysphoria or a core gender identity that is firmly discordant from their anatomical sex. Thinking about the relationship from another perspective, perhaps those with ASD are less aware of the social constructs of gender and are able to express their gender identity (whether it be crossgender or cisgender) more freely and without the worry of how they may be perceived by others. Undoubtedly, a complex interplay between ASD and gender dysphoria/gender-nonconforming behavior is suspected, and more quality research is needed – research that, at a minimum, is informed by the use of representative sample groups drawn from all developmental periods and well-defined diagnostic constructs.
Clinical pearl
Maddie, a transgender man, received a diagnosis of an autism spectrum disorder as a young adult – a full 16 years after the median age of diagnosis (MMWR Surveill Summ. 2016;65[3]:1-23).
The case illustrates some of the difficulties of attempting to parse out the cause of social impairments in an individual who also may have other phenomena that influence interpersonal functioning (attention-deficit/hyperactivity disorder, anxiety, gender dysphoria, etc.) in a developmental manner. Diagnostic “overshadowing” (mistakenly attributing symptoms to a particular condition and paying little attention to other possibilities) is not uncommon in youth with ASD and co-occurring conditions. Given the overlap between gender-nonconforming youth, individuals with gender dysphoria, and ASD, primary care providers may opt to incorporate mental health professionals familiar with ASD into the assessment and care of these children and adolescents. Getting a complete developmental history and paying attention to the possibility of early red flags for ASD can help to elucidate diagnostic possibilities and inform treatment planning. If a co-occurring diagnosis is confirmed, implementation of evidence-based interventions that are provided through the lens of ASD can help to minimize the risk of developing other co-occurring pathology, build resilience, alleviate social impairment, and foster self-advocacy skills in this very vulnerable population. Regardless of whether gender-variant youth and adolescents have an autistic disorder, mental health providers can have an integral role in assisting these individuals and their families to navigate a complicated system of care, address gender dysphoria, and promote healthy identity development (J Am Acad Child Adolesc Psychiatry. 2016 Jun;55[6]:441-3).
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, where he is director of the autism diagnostic clinic.
Despite the lack of clarity about the exact prevalence in youth, particularly prepubertal youth, it’s clear that an increasing number of children and teenagers are presenting to multidisciplinary clinics for evaluation and management of gender identity issues (Pediatrics. 2012 Mar;129[3]:418-25). Recent literature has indicated that the prevalence of individuals overall identifying as transgender and/or experiencing gender dysphoria is about 0.2%-0.3% of the population (JAMA Pediatr. 2016;170[5]:423-4), while being mindful of the variability in the characteristics of the populations included in certain studies.
Although gender variation, in and of itself, is not a disorder, these youth are a considerably underserved and poorly researched population with specific medical and mental health needs. They are at risk for being victims of abuse and developing a range of mental health struggles, including mood disorders, suicidal thinking, self-harming, and anxiety, possibly because of the stresses they experience socially (family rejection, victimization). In addition to these more discrete psychiatric phenomena, co-occurring autism spectrum disorders (or traits thereof) are increasingly being recognized in transgender youth.
Case summary
Maddie is a 20-year-old college sophomore who presents for an autism diagnostic evaluation after being seen by a mental health colleague for consultation regarding medical treatment associated with female-to-male gender transition. In brief, Maddie reports a longstanding history of feeling “socially overwhelmed.” He is an articulate young adult who shares that he’s frequently uncomfortable in social situations, explaining that he has trouble “reading people,” acknowledging a tendency to become overly focused on the details of others and missing the gestalt of interpersonal interactions. Maddie discloses never having close friendships, and although he identifies as lonely, he doesn’t “understand the appeal of casual social interactions.” Maddie and his mother seek an understanding of such social difficulties, wondering about the possibility of Asperger’s syndrome.
Maddie, whose assigned gender at birth was female, now identifies as male. His mother recalls him to have been a precocious preschooler in terms of language development who had no significant developmental delays and became, per report, increasingly withdrawn in elementary school. Over the years, educators have commented repeatedly on the fact that Maddie has needed to work on his “people skills,” with past providers ascribing such struggles to anxiety and social awkwardness that were thought to inherently accompany gender-variant behaviors and thinking. Maddie socially transitioned from a female to male in grade 11 and began taking prescribed testosterone about 4 years ago.
In the interview, Maddie is a hesitant male-appearing individual whose eye contact and spontaneity are limited. He has a guarded manner, and although he is able to answer questions posed to him, rapport is difficult to establish as he appears interpersonally uncomfortable.
Prior to the visit, Maddie’s mother completed the Social Responsiveness Scales, which revealed elevated scores in the area of Social Communication and Social Motivation. Despite appearing cognitively bright and having an array of academic and creative strengths, Maddie’s troubles forming meaningful relationships are striking. Deficits in social-emotional competence are incommensurate with his suspected cognitive abilities, and although he relates learning social skills from film over the years, he endorses pervasively compromised social-communication aptitudes and enduring functional impairments. “I’m always playing catch-up socially,” he shares, wondering how this will affect him in his nursing career.
Discussion
Maddie and his mother participated in an autism diagnostic evaluation, including the administration of the Autism Diagnostic Interview–Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS). The evaluation revealed a profile of social impairments and inflexible thinking dating back to early childhood that supported a diagnosis of an autism spectrum disorder (ASD). Other diagnoses, including anxiety disorders, a depressive disorder, a social pragmatic communication disorder, and a nonverbal learning disorder, were considered, but ultimately it was concluded that ASD best captured Maddie, who also continued to display features consistent with gender dysphoria.
Over the past 30 years, the relationship between gender-related concerns and ASD has begun to be discussed in the scientific literature, beginning with case reports and more recently with a retrospective chart study that yielded results suggesting that subjects diagnosed with ASD were almost eight times more likely to report gender variance than a nonreferred standardization sample of the Child Behavior Checklist (CBCL) (Transgender Health. 2016 Feb;1[1]:63-8). These results echo those of a prior study showing that 7.8% of individuals presenting for an evaluation in a Dutch gender clinic had an ASD diagnosis (J Autism Dev Disord. 2010 Aug;40[8]:930-6).
With the individual prevalences for ASD and gender dysphoria taken into account, these numbers suggest that the prevalence of ASD in gender-dysphoric youth is about four times higher than that found in the general population (Sex Med Rev. 2016;4:3e14). These data raise questions regarding potential shared etiology and the neurobiology between a disorder of social communication and gender identity–related issues; however, to date, despite several theories attempting to explain the connection (the notion of an “extreme male brain,” role of sex hormones, etc.), the relationship remains puzzling. Some have argued that the rigid thinking that can characterize ASD may lead those individuals who display any gender-variant behaviors to automatically identify as the gender opposite their biologic gender, even though they aren’t necessarily experiencing frank gender dysphoria or a core gender identity that is firmly discordant from their anatomical sex. Thinking about the relationship from another perspective, perhaps those with ASD are less aware of the social constructs of gender and are able to express their gender identity (whether it be crossgender or cisgender) more freely and without the worry of how they may be perceived by others. Undoubtedly, a complex interplay between ASD and gender dysphoria/gender-nonconforming behavior is suspected, and more quality research is needed – research that, at a minimum, is informed by the use of representative sample groups drawn from all developmental periods and well-defined diagnostic constructs.
Clinical pearl
Maddie, a transgender man, received a diagnosis of an autism spectrum disorder as a young adult – a full 16 years after the median age of diagnosis (MMWR Surveill Summ. 2016;65[3]:1-23).
The case illustrates some of the difficulties of attempting to parse out the cause of social impairments in an individual who also may have other phenomena that influence interpersonal functioning (attention-deficit/hyperactivity disorder, anxiety, gender dysphoria, etc.) in a developmental manner. Diagnostic “overshadowing” (mistakenly attributing symptoms to a particular condition and paying little attention to other possibilities) is not uncommon in youth with ASD and co-occurring conditions. Given the overlap between gender-nonconforming youth, individuals with gender dysphoria, and ASD, primary care providers may opt to incorporate mental health professionals familiar with ASD into the assessment and care of these children and adolescents. Getting a complete developmental history and paying attention to the possibility of early red flags for ASD can help to elucidate diagnostic possibilities and inform treatment planning. If a co-occurring diagnosis is confirmed, implementation of evidence-based interventions that are provided through the lens of ASD can help to minimize the risk of developing other co-occurring pathology, build resilience, alleviate social impairment, and foster self-advocacy skills in this very vulnerable population. Regardless of whether gender-variant youth and adolescents have an autistic disorder, mental health providers can have an integral role in assisting these individuals and their families to navigate a complicated system of care, address gender dysphoria, and promote healthy identity development (J Am Acad Child Adolesc Psychiatry. 2016 Jun;55[6]:441-3).
Dr. Dickerson, a child and adolescent psychiatrist, is assistant professor of psychiatry at the University of Vermont, where he is director of the autism diagnostic clinic.
Considering learning disorders
Introduction
Often, it can be difficult for providers to fully understand why children may be presenting with behavioral problems that appear to be occurring principally in specific environments. Parents may bring their children for an evaluation based upon reports they are receiving from teachers and other school personnel who may be observing more prominent oppositionality, social struggles, troubles following instructions, and frustration intolerance than the parents are experiencing in the home. Additionally, youth may begin to display school refusal and voice strong negative feelings about school. Although at face value, these problems may indicate potential diagnoses like oppositional defiant disorder and attention-deficit/hyperactivity disorder, one also should consider other underlying “non–mental health” issues that could greatly influence school success and present with a range of emotional and behavioral struggles.
Case Summary
Brynn is an animated, social, and strong-willed 4 year-old girl who experienced delays in her receptive and expressive language that prompted her engagement in early intervention around 18 months of age. She and her family continued to receive developmental services over the next few years and, at the age of 3 years, because of ongoing speech and language challenges, she was enrolled in a preschool individualized education program. In her program, Brynn participates in an array of specialized instruction, but her educators comment that she is not making expected academic progress and has troubles “holding onto information,” focusing, and participating meaningfully with peers in a consistent manner.
At times, Brynn can be impulsive, aggressive, and volatile – behavioral traits that mom denies are occurring in the home. A diagnosis of an autism spectrum disorder has been ruled out, and Brynn’s hearing and vision are tested to be normal. Brynn’s mother feels confused by the reports she’s getting from school; “I want Brynn to be happy,” she shares. “I needed special help to read in high school, and I worry about her future.”
Discussion
Learning disorders (or learning disabilities, using educational terminology) are defined as neurologically rooted problems that affect academic achievement via the receiving, processing, or communication of information. They occur in 1 in 10 children (Pediatrics. 2007 Feb;119 Suppl 1:S77-83) and can present with specific problems in reading, writing, and mathematics while having considerable influence on related aptitudes in language, social ability, self-help, and motor functioning. Dyslexia – a developmental reading disorder – is the most common type of learning disorder (LD). Although it’s not clear what causes learning disorders, there are several factors that are thought to play a role in their development, including hereditary factors and problems with pregnancy and birth. Having developmental delays also can place children at risk for having later learning problems that may not be identifiable until a child enters a more structured learning environment. At clinical visits during the preschool years, particularly with a child who may have had earlier developmental concerns, the pediatrician should inquire about a range of “warning signs” that may indicate a need for additional screening and evaluation for specific learning issues.
The National Center for Learning Disabilities offers a range of practical tips for pediatricians who may want to further explore parental and teacher concerns by asking questions related to literacy, writing, language, and social-emotional skills, attention, and gross and fine motor movements in a developmentally informed manner. Further exploring Brynn’s mother’s comments in the context of her daughter not progressing in school revealed a history of difficulty retaining new words, troubles learning colors and shapes, challenges remembering rules, and particular difficulties engaging in group play with other 4-year-olds – all potential signals for a learning disorder. This alerted educators that she may indeed be struggling with issues beyond that of an enduring speech-language delay.
With the suspicion that Brynn was presenting with signs and symptoms suggestive of a learning disorder, her family was educated about the Individuals with Disabilities Education Act, and it was recommended she receive a comprehensive psychoeducational evaluation to further assess her intellectual profile, academic achievement, social functioning, and performance in the classroom using standardized tools. These tools, among other objectives, can help the child’s team offer a more definitive LD diagnosis while informing the potential development of special education supports and assessing for an intellectual disability. The DSM 5 indicates that LD diagnostic criteria are to be met based upon a clinical synthesis of history, school reports, and psychoeducational assessment.
It’s been long established that children with learning problems frequently have co-occurring emotional and behavioral troubles (Arch Dis Child. 1974 Apr; 49[4]:249-56), many of which also should be considered as differential diagnoses in a child with school problems – as such, a complicated interplay of learning disorders and internalizing and externalizing conditions is often appreciated in school-age children with academic difficulties. At times, learning disorders can lead to emotional distress and could also be misdiagnosed as primary emotional and behavioral challenges. Specifically, children with learning problems are at risk for struggling with low self-esteem, loneliness, and anxiety, which also can be associated with mood disorders, school dropout, victimization, and engaging in substance use.
In Brynn’s case, the results of the Teacher Report Forms and Child Behavior Checklists were reviewed, revealing some evidence that she was experiencing clinical-level problems with her attention, but a discrepancy was noted between the teacher and parent report (the teachers endorsing more clinically significant symptoms). Although co-occurring attention-deficit/hyperactivity disorder (ADHD) is not uncommon in children with a learning disorder (Pediatrics. 2011 Mar;127[3]:462-70), we did not feel Brynn met criteria for this. We elected not to provide an ADHD diagnosis but are mindful that her attentional concerns should be closely monitored over time; a diagnosis may be more relevant in the future, perhaps influencing Brynn’s eligibility for services and treatment planning. Furthermore, comorbidity with ADHD is predictive of worse mental health outcomes, compared with learning disabilities presenting without ADHD.
Clinical Pearl
Pediatricians should consider the possibility of a child having a learning disorder in youth who display risk factors (family history of learning concerns, atypical development, prematurity, etc.) and have problems at school. Such problems may be presenting with emotional and behavioral symptoms that could mask a child’s primary learning impairments. Learning disorders also frequently co-occur with psychiatric conditions, but engaging children in effective interventions (school-based supports) could potentially attenuate the risk for the development of mental health problems. Also, promoting emotional wellness and fostering self-worth may improve the academic performance of children with learning disorders.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington. He is the director of the university’s autism diagnostic clinic. Dr. Dickerson said he had no relevant financial disclosures. Contact Dr. Dickerson at [email protected].
Introduction
Often, it can be difficult for providers to fully understand why children may be presenting with behavioral problems that appear to be occurring principally in specific environments. Parents may bring their children for an evaluation based upon reports they are receiving from teachers and other school personnel who may be observing more prominent oppositionality, social struggles, troubles following instructions, and frustration intolerance than the parents are experiencing in the home. Additionally, youth may begin to display school refusal and voice strong negative feelings about school. Although at face value, these problems may indicate potential diagnoses like oppositional defiant disorder and attention-deficit/hyperactivity disorder, one also should consider other underlying “non–mental health” issues that could greatly influence school success and present with a range of emotional and behavioral struggles.
Case Summary
Brynn is an animated, social, and strong-willed 4 year-old girl who experienced delays in her receptive and expressive language that prompted her engagement in early intervention around 18 months of age. She and her family continued to receive developmental services over the next few years and, at the age of 3 years, because of ongoing speech and language challenges, she was enrolled in a preschool individualized education program. In her program, Brynn participates in an array of specialized instruction, but her educators comment that she is not making expected academic progress and has troubles “holding onto information,” focusing, and participating meaningfully with peers in a consistent manner.
At times, Brynn can be impulsive, aggressive, and volatile – behavioral traits that mom denies are occurring in the home. A diagnosis of an autism spectrum disorder has been ruled out, and Brynn’s hearing and vision are tested to be normal. Brynn’s mother feels confused by the reports she’s getting from school; “I want Brynn to be happy,” she shares. “I needed special help to read in high school, and I worry about her future.”
Discussion
Learning disorders (or learning disabilities, using educational terminology) are defined as neurologically rooted problems that affect academic achievement via the receiving, processing, or communication of information. They occur in 1 in 10 children (Pediatrics. 2007 Feb;119 Suppl 1:S77-83) and can present with specific problems in reading, writing, and mathematics while having considerable influence on related aptitudes in language, social ability, self-help, and motor functioning. Dyslexia – a developmental reading disorder – is the most common type of learning disorder (LD). Although it’s not clear what causes learning disorders, there are several factors that are thought to play a role in their development, including hereditary factors and problems with pregnancy and birth. Having developmental delays also can place children at risk for having later learning problems that may not be identifiable until a child enters a more structured learning environment. At clinical visits during the preschool years, particularly with a child who may have had earlier developmental concerns, the pediatrician should inquire about a range of “warning signs” that may indicate a need for additional screening and evaluation for specific learning issues.
The National Center for Learning Disabilities offers a range of practical tips for pediatricians who may want to further explore parental and teacher concerns by asking questions related to literacy, writing, language, and social-emotional skills, attention, and gross and fine motor movements in a developmentally informed manner. Further exploring Brynn’s mother’s comments in the context of her daughter not progressing in school revealed a history of difficulty retaining new words, troubles learning colors and shapes, challenges remembering rules, and particular difficulties engaging in group play with other 4-year-olds – all potential signals for a learning disorder. This alerted educators that she may indeed be struggling with issues beyond that of an enduring speech-language delay.
With the suspicion that Brynn was presenting with signs and symptoms suggestive of a learning disorder, her family was educated about the Individuals with Disabilities Education Act, and it was recommended she receive a comprehensive psychoeducational evaluation to further assess her intellectual profile, academic achievement, social functioning, and performance in the classroom using standardized tools. These tools, among other objectives, can help the child’s team offer a more definitive LD diagnosis while informing the potential development of special education supports and assessing for an intellectual disability. The DSM 5 indicates that LD diagnostic criteria are to be met based upon a clinical synthesis of history, school reports, and psychoeducational assessment.
It’s been long established that children with learning problems frequently have co-occurring emotional and behavioral troubles (Arch Dis Child. 1974 Apr; 49[4]:249-56), many of which also should be considered as differential diagnoses in a child with school problems – as such, a complicated interplay of learning disorders and internalizing and externalizing conditions is often appreciated in school-age children with academic difficulties. At times, learning disorders can lead to emotional distress and could also be misdiagnosed as primary emotional and behavioral challenges. Specifically, children with learning problems are at risk for struggling with low self-esteem, loneliness, and anxiety, which also can be associated with mood disorders, school dropout, victimization, and engaging in substance use.
In Brynn’s case, the results of the Teacher Report Forms and Child Behavior Checklists were reviewed, revealing some evidence that she was experiencing clinical-level problems with her attention, but a discrepancy was noted between the teacher and parent report (the teachers endorsing more clinically significant symptoms). Although co-occurring attention-deficit/hyperactivity disorder (ADHD) is not uncommon in children with a learning disorder (Pediatrics. 2011 Mar;127[3]:462-70), we did not feel Brynn met criteria for this. We elected not to provide an ADHD diagnosis but are mindful that her attentional concerns should be closely monitored over time; a diagnosis may be more relevant in the future, perhaps influencing Brynn’s eligibility for services and treatment planning. Furthermore, comorbidity with ADHD is predictive of worse mental health outcomes, compared with learning disabilities presenting without ADHD.
Clinical Pearl
Pediatricians should consider the possibility of a child having a learning disorder in youth who display risk factors (family history of learning concerns, atypical development, prematurity, etc.) and have problems at school. Such problems may be presenting with emotional and behavioral symptoms that could mask a child’s primary learning impairments. Learning disorders also frequently co-occur with psychiatric conditions, but engaging children in effective interventions (school-based supports) could potentially attenuate the risk for the development of mental health problems. Also, promoting emotional wellness and fostering self-worth may improve the academic performance of children with learning disorders.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington. He is the director of the university’s autism diagnostic clinic. Dr. Dickerson said he had no relevant financial disclosures. Contact Dr. Dickerson at [email protected].
Introduction
Often, it can be difficult for providers to fully understand why children may be presenting with behavioral problems that appear to be occurring principally in specific environments. Parents may bring their children for an evaluation based upon reports they are receiving from teachers and other school personnel who may be observing more prominent oppositionality, social struggles, troubles following instructions, and frustration intolerance than the parents are experiencing in the home. Additionally, youth may begin to display school refusal and voice strong negative feelings about school. Although at face value, these problems may indicate potential diagnoses like oppositional defiant disorder and attention-deficit/hyperactivity disorder, one also should consider other underlying “non–mental health” issues that could greatly influence school success and present with a range of emotional and behavioral struggles.
Case Summary
Brynn is an animated, social, and strong-willed 4 year-old girl who experienced delays in her receptive and expressive language that prompted her engagement in early intervention around 18 months of age. She and her family continued to receive developmental services over the next few years and, at the age of 3 years, because of ongoing speech and language challenges, she was enrolled in a preschool individualized education program. In her program, Brynn participates in an array of specialized instruction, but her educators comment that she is not making expected academic progress and has troubles “holding onto information,” focusing, and participating meaningfully with peers in a consistent manner.
At times, Brynn can be impulsive, aggressive, and volatile – behavioral traits that mom denies are occurring in the home. A diagnosis of an autism spectrum disorder has been ruled out, and Brynn’s hearing and vision are tested to be normal. Brynn’s mother feels confused by the reports she’s getting from school; “I want Brynn to be happy,” she shares. “I needed special help to read in high school, and I worry about her future.”
Discussion
Learning disorders (or learning disabilities, using educational terminology) are defined as neurologically rooted problems that affect academic achievement via the receiving, processing, or communication of information. They occur in 1 in 10 children (Pediatrics. 2007 Feb;119 Suppl 1:S77-83) and can present with specific problems in reading, writing, and mathematics while having considerable influence on related aptitudes in language, social ability, self-help, and motor functioning. Dyslexia – a developmental reading disorder – is the most common type of learning disorder (LD). Although it’s not clear what causes learning disorders, there are several factors that are thought to play a role in their development, including hereditary factors and problems with pregnancy and birth. Having developmental delays also can place children at risk for having later learning problems that may not be identifiable until a child enters a more structured learning environment. At clinical visits during the preschool years, particularly with a child who may have had earlier developmental concerns, the pediatrician should inquire about a range of “warning signs” that may indicate a need for additional screening and evaluation for specific learning issues.
The National Center for Learning Disabilities offers a range of practical tips for pediatricians who may want to further explore parental and teacher concerns by asking questions related to literacy, writing, language, and social-emotional skills, attention, and gross and fine motor movements in a developmentally informed manner. Further exploring Brynn’s mother’s comments in the context of her daughter not progressing in school revealed a history of difficulty retaining new words, troubles learning colors and shapes, challenges remembering rules, and particular difficulties engaging in group play with other 4-year-olds – all potential signals for a learning disorder. This alerted educators that she may indeed be struggling with issues beyond that of an enduring speech-language delay.
With the suspicion that Brynn was presenting with signs and symptoms suggestive of a learning disorder, her family was educated about the Individuals with Disabilities Education Act, and it was recommended she receive a comprehensive psychoeducational evaluation to further assess her intellectual profile, academic achievement, social functioning, and performance in the classroom using standardized tools. These tools, among other objectives, can help the child’s team offer a more definitive LD diagnosis while informing the potential development of special education supports and assessing for an intellectual disability. The DSM 5 indicates that LD diagnostic criteria are to be met based upon a clinical synthesis of history, school reports, and psychoeducational assessment.
It’s been long established that children with learning problems frequently have co-occurring emotional and behavioral troubles (Arch Dis Child. 1974 Apr; 49[4]:249-56), many of which also should be considered as differential diagnoses in a child with school problems – as such, a complicated interplay of learning disorders and internalizing and externalizing conditions is often appreciated in school-age children with academic difficulties. At times, learning disorders can lead to emotional distress and could also be misdiagnosed as primary emotional and behavioral challenges. Specifically, children with learning problems are at risk for struggling with low self-esteem, loneliness, and anxiety, which also can be associated with mood disorders, school dropout, victimization, and engaging in substance use.
In Brynn’s case, the results of the Teacher Report Forms and Child Behavior Checklists were reviewed, revealing some evidence that she was experiencing clinical-level problems with her attention, but a discrepancy was noted between the teacher and parent report (the teachers endorsing more clinically significant symptoms). Although co-occurring attention-deficit/hyperactivity disorder (ADHD) is not uncommon in children with a learning disorder (Pediatrics. 2011 Mar;127[3]:462-70), we did not feel Brynn met criteria for this. We elected not to provide an ADHD diagnosis but are mindful that her attentional concerns should be closely monitored over time; a diagnosis may be more relevant in the future, perhaps influencing Brynn’s eligibility for services and treatment planning. Furthermore, comorbidity with ADHD is predictive of worse mental health outcomes, compared with learning disabilities presenting without ADHD.
Clinical Pearl
Pediatricians should consider the possibility of a child having a learning disorder in youth who display risk factors (family history of learning concerns, atypical development, prematurity, etc.) and have problems at school. Such problems may be presenting with emotional and behavioral symptoms that could mask a child’s primary learning impairments. Learning disorders also frequently co-occur with psychiatric conditions, but engaging children in effective interventions (school-based supports) could potentially attenuate the risk for the development of mental health problems. Also, promoting emotional wellness and fostering self-worth may improve the academic performance of children with learning disorders.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington. He is the director of the university’s autism diagnostic clinic. Dr. Dickerson said he had no relevant financial disclosures. Contact Dr. Dickerson at [email protected].
Complementary and alternative approaches in treating ASD
Navigating the world of autism treatments and staying abreast of the evolving evidence base of a wide array of interventions spanning diverse modalities can be overwhelming for even well-trained clinicians. Parents and caregivers for children with an autism spectrum disorder (ASD) equally face troubles reconciling treatment information often obtained not only from their health care providers, but from family members, friends, and the Internet (where thousands of websites promise “cures” or improvements for ASD/ASD-related symptoms). In this context, families are commonly seeking complementary and alternative treatments for their children. Although some of these treatments are relatively benign, key safety and efficacy issues remain, and parents often act with little to no guidance from their child’s primary care provider. With the increasing prevalence of the use of nontraditional treatments used both with and in place of conventional treatments, you should be prepared to counsel families in making the most informed decisions in the best interest of their child.
Case Summary
Adam is a 15-year-old boy who carries a diagnosis of an ASD accompanied by enduring gastrointestinal troubles (constipation), auditory and tactile sensitivities, and episodes of aggression towards himself and others. Adam is essentially nonverbal and enjoys watching children’s videos repeatedly (Thomas the Train); he attends school in an alternative classroom as his hyperactivity, impulsivity, and susceptibility to behaving in an unpredictable physical manner limits his ability to successfully engage with peers without one-on-one supervision.
In an attempt to address Adam’s challenging behaviors (that haven’t responded significantly to a variety of conventional medications and behavioral strategies), his well-meaning and highly educated parents seek advice. They admit they’ve come across websites that offer treatments with a promise to cure their son’s autism symptoms. Adam’s mother has always preferred “a more natural” approach to her son’s treatment, and she still has vivid memories of the side effects her son experienced on past medications, such as akathisia with risperidone.
Discussion
Adam’s case is not an uncommon scenario encountered by many families who may be experiencing increasing desperation to address their child’s autism-related struggles while being disappointed by conventional treatments. Autism is a complex neurobiologic disorder with a heterogeneous presentation for which there are no well-established pharmacologic treatments to address its core symptoms of social-communication impairments and restricted, repetitive behaviors/interests. With this in mind, it’s not surprising that studies indicate that at least 50% of families with an autistic child have tried complementary and alternative medicine (CAM) treatments. Notably, the higher the child-related stress, the more likely the families are to try CAM interventions (J. Child Neurology 2014;29:360-7) and higher use of CAM is associated with coexisting gastrointestinal problems, seizure disorders, and behavioral problems in youth with autism (Pediatrics 2012;130:S77-S82).
CAM treatments are defined by the National Center for Complementary and Integrative Health (nccih.nih.gov) as “a group of diverse medical and health care systems, practices, and products that are not presently considered to be a part of conventional medicine.” They may include biologically based therapies (dietary supplements, chelation, immune-modulating agents, special diets), mind-body medicine (acupuncture, biofeedback), energy medicine, and manipulative and body-based treatments (massage, chiropractic manipulation). Families who choose CAM interventions for their children with autism tend to try natural products, special diets, and/or mind and body practices.
Reviewing the literature surrounding CAM, there are few randomized controlled trials published, and you should be aware that evidence for most of these interventions is insufficient to make strong recommendations for or against their use. Certainly, some treatments considered as CAM can be effective in treating specific target symptoms that often co-occur in individuals with autism (using melatonin to address sleep difficulties) without major safety issues, but others are potentially dangerous and likely ineffective (chelation therapy, hyperbaric oxygen, mineral solutions). The National Autism Center has published a comprehensive analysis of autism interventions (www.nationalautismcenter.org) that can be helpful for parents and practitioners to make informed treatment decisions; their most recent 2015 review categorizes some CAM treatments as having “emerging” evidence for favorable outcomes (music therapy, massage therapy, exercise) and labels some CAM interventions as having little to no evidence to support their efficacy. Interestingly, gluten-free and casein free diets are included in this latter category. Families are frequently curious about such elimination diets, especially given the buzz in both the popular and scientific press about the gut-brain connection. Although these diets do not have strong evidence to support their use in managing core features of autism, investigators are examining whether there may be a subgroup of children with autism (those with gastrointestinal problems) who may achieve potential benefits. All in all, there’s a need for more robust research on this particular set of treatments. Families should be aware that if they chose to pursue an elimination diet, adherence for children who are inherently picky eaters may be challenging. Furthermore, although commonly labeled as safe, these diets could be linked with potentially harmful adverse effects such as nutritional deficits.
To help guide clinical decision making, it may be helpful for you to first consult the American Academy of Pediatrics 2001 policy statement, “Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability” (Pediatrics 2001;107:598-601) and then consider a range of variables when discussing the use of CAM treatments with families. Some authors classify treatments as being safe, easy, cheap, and sensible (SECS) versus being risky, unrealistic, difficult, and expensive (RUDE) (Contemporary Pediatrics 2004;21:61-72), and using these terms when engaging parents in treatment decisions can be instructive for all parties. For example, there is limited high-quality evidence that omega-3 fatty acid supplementation is effective in treating autism symptoms, but the fact that this can be easy, inexpensive, and relatively safe for families to use may ultimately inform your decision to support a family’s trial of this with close monitoring. Additionally, it is important to explore whether families are seeking to replace other therapies with something novel and new, or are they looking for something to complement existing treatments/services? You should always, while being mindful of a family’s needs, values, and resources, consider first and foremost the use of treatments with established efficacy. Certainly CAM treatments – particularly those that are nonbiologic (pet therapy) – may positively augment standard interventions without potential significant harm.
Clinical Pearl
With the increasing number of parents turning to CAM treatments for their children with autism (particularly when the parents themselves use CAM), you should be prepared to talk with families about their decision making and actively ask families if this is something that they’ve considered. Given that the research on many CAM treatments is in early stages, it’s not unique to perhaps feel ill prepared to make CAM recommendations to families. Often it’s helpful to share this “CAM illiteracy” with families and aim to work together in a nonjudgmental manner to evaluate and select individualized treatment programs based on factors of potential efficacy, safety, cost, and family values. Regardless of the intervention, you should establish, with all patients, reliable methods for documenting past trials of all treatments, evaluating target symptoms, monitoring clinical outcomes, and measuring adverse events.
You should work to provide realistic hope to families and acknowledge that some CAM treatments may work better for some children, but we often don’t have a great sense, from the current state-of-the-science of ASD treatment, as to who these kids may be.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont. He is the director of the university’s autism diagnostic clinic. Dr. Dickerson said he had no relevant financial disclosures. Contact Dr. Dickerson at [email protected].
Navigating the world of autism treatments and staying abreast of the evolving evidence base of a wide array of interventions spanning diverse modalities can be overwhelming for even well-trained clinicians. Parents and caregivers for children with an autism spectrum disorder (ASD) equally face troubles reconciling treatment information often obtained not only from their health care providers, but from family members, friends, and the Internet (where thousands of websites promise “cures” or improvements for ASD/ASD-related symptoms). In this context, families are commonly seeking complementary and alternative treatments for their children. Although some of these treatments are relatively benign, key safety and efficacy issues remain, and parents often act with little to no guidance from their child’s primary care provider. With the increasing prevalence of the use of nontraditional treatments used both with and in place of conventional treatments, you should be prepared to counsel families in making the most informed decisions in the best interest of their child.
Case Summary
Adam is a 15-year-old boy who carries a diagnosis of an ASD accompanied by enduring gastrointestinal troubles (constipation), auditory and tactile sensitivities, and episodes of aggression towards himself and others. Adam is essentially nonverbal and enjoys watching children’s videos repeatedly (Thomas the Train); he attends school in an alternative classroom as his hyperactivity, impulsivity, and susceptibility to behaving in an unpredictable physical manner limits his ability to successfully engage with peers without one-on-one supervision.
In an attempt to address Adam’s challenging behaviors (that haven’t responded significantly to a variety of conventional medications and behavioral strategies), his well-meaning and highly educated parents seek advice. They admit they’ve come across websites that offer treatments with a promise to cure their son’s autism symptoms. Adam’s mother has always preferred “a more natural” approach to her son’s treatment, and she still has vivid memories of the side effects her son experienced on past medications, such as akathisia with risperidone.
Discussion
Adam’s case is not an uncommon scenario encountered by many families who may be experiencing increasing desperation to address their child’s autism-related struggles while being disappointed by conventional treatments. Autism is a complex neurobiologic disorder with a heterogeneous presentation for which there are no well-established pharmacologic treatments to address its core symptoms of social-communication impairments and restricted, repetitive behaviors/interests. With this in mind, it’s not surprising that studies indicate that at least 50% of families with an autistic child have tried complementary and alternative medicine (CAM) treatments. Notably, the higher the child-related stress, the more likely the families are to try CAM interventions (J. Child Neurology 2014;29:360-7) and higher use of CAM is associated with coexisting gastrointestinal problems, seizure disorders, and behavioral problems in youth with autism (Pediatrics 2012;130:S77-S82).
CAM treatments are defined by the National Center for Complementary and Integrative Health (nccih.nih.gov) as “a group of diverse medical and health care systems, practices, and products that are not presently considered to be a part of conventional medicine.” They may include biologically based therapies (dietary supplements, chelation, immune-modulating agents, special diets), mind-body medicine (acupuncture, biofeedback), energy medicine, and manipulative and body-based treatments (massage, chiropractic manipulation). Families who choose CAM interventions for their children with autism tend to try natural products, special diets, and/or mind and body practices.
Reviewing the literature surrounding CAM, there are few randomized controlled trials published, and you should be aware that evidence for most of these interventions is insufficient to make strong recommendations for or against their use. Certainly, some treatments considered as CAM can be effective in treating specific target symptoms that often co-occur in individuals with autism (using melatonin to address sleep difficulties) without major safety issues, but others are potentially dangerous and likely ineffective (chelation therapy, hyperbaric oxygen, mineral solutions). The National Autism Center has published a comprehensive analysis of autism interventions (www.nationalautismcenter.org) that can be helpful for parents and practitioners to make informed treatment decisions; their most recent 2015 review categorizes some CAM treatments as having “emerging” evidence for favorable outcomes (music therapy, massage therapy, exercise) and labels some CAM interventions as having little to no evidence to support their efficacy. Interestingly, gluten-free and casein free diets are included in this latter category. Families are frequently curious about such elimination diets, especially given the buzz in both the popular and scientific press about the gut-brain connection. Although these diets do not have strong evidence to support their use in managing core features of autism, investigators are examining whether there may be a subgroup of children with autism (those with gastrointestinal problems) who may achieve potential benefits. All in all, there’s a need for more robust research on this particular set of treatments. Families should be aware that if they chose to pursue an elimination diet, adherence for children who are inherently picky eaters may be challenging. Furthermore, although commonly labeled as safe, these diets could be linked with potentially harmful adverse effects such as nutritional deficits.
To help guide clinical decision making, it may be helpful for you to first consult the American Academy of Pediatrics 2001 policy statement, “Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability” (Pediatrics 2001;107:598-601) and then consider a range of variables when discussing the use of CAM treatments with families. Some authors classify treatments as being safe, easy, cheap, and sensible (SECS) versus being risky, unrealistic, difficult, and expensive (RUDE) (Contemporary Pediatrics 2004;21:61-72), and using these terms when engaging parents in treatment decisions can be instructive for all parties. For example, there is limited high-quality evidence that omega-3 fatty acid supplementation is effective in treating autism symptoms, but the fact that this can be easy, inexpensive, and relatively safe for families to use may ultimately inform your decision to support a family’s trial of this with close monitoring. Additionally, it is important to explore whether families are seeking to replace other therapies with something novel and new, or are they looking for something to complement existing treatments/services? You should always, while being mindful of a family’s needs, values, and resources, consider first and foremost the use of treatments with established efficacy. Certainly CAM treatments – particularly those that are nonbiologic (pet therapy) – may positively augment standard interventions without potential significant harm.
Clinical Pearl
With the increasing number of parents turning to CAM treatments for their children with autism (particularly when the parents themselves use CAM), you should be prepared to talk with families about their decision making and actively ask families if this is something that they’ve considered. Given that the research on many CAM treatments is in early stages, it’s not unique to perhaps feel ill prepared to make CAM recommendations to families. Often it’s helpful to share this “CAM illiteracy” with families and aim to work together in a nonjudgmental manner to evaluate and select individualized treatment programs based on factors of potential efficacy, safety, cost, and family values. Regardless of the intervention, you should establish, with all patients, reliable methods for documenting past trials of all treatments, evaluating target symptoms, monitoring clinical outcomes, and measuring adverse events.
You should work to provide realistic hope to families and acknowledge that some CAM treatments may work better for some children, but we often don’t have a great sense, from the current state-of-the-science of ASD treatment, as to who these kids may be.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont. He is the director of the university’s autism diagnostic clinic. Dr. Dickerson said he had no relevant financial disclosures. Contact Dr. Dickerson at [email protected].
Navigating the world of autism treatments and staying abreast of the evolving evidence base of a wide array of interventions spanning diverse modalities can be overwhelming for even well-trained clinicians. Parents and caregivers for children with an autism spectrum disorder (ASD) equally face troubles reconciling treatment information often obtained not only from their health care providers, but from family members, friends, and the Internet (where thousands of websites promise “cures” or improvements for ASD/ASD-related symptoms). In this context, families are commonly seeking complementary and alternative treatments for their children. Although some of these treatments are relatively benign, key safety and efficacy issues remain, and parents often act with little to no guidance from their child’s primary care provider. With the increasing prevalence of the use of nontraditional treatments used both with and in place of conventional treatments, you should be prepared to counsel families in making the most informed decisions in the best interest of their child.
Case Summary
Adam is a 15-year-old boy who carries a diagnosis of an ASD accompanied by enduring gastrointestinal troubles (constipation), auditory and tactile sensitivities, and episodes of aggression towards himself and others. Adam is essentially nonverbal and enjoys watching children’s videos repeatedly (Thomas the Train); he attends school in an alternative classroom as his hyperactivity, impulsivity, and susceptibility to behaving in an unpredictable physical manner limits his ability to successfully engage with peers without one-on-one supervision.
In an attempt to address Adam’s challenging behaviors (that haven’t responded significantly to a variety of conventional medications and behavioral strategies), his well-meaning and highly educated parents seek advice. They admit they’ve come across websites that offer treatments with a promise to cure their son’s autism symptoms. Adam’s mother has always preferred “a more natural” approach to her son’s treatment, and she still has vivid memories of the side effects her son experienced on past medications, such as akathisia with risperidone.
Discussion
Adam’s case is not an uncommon scenario encountered by many families who may be experiencing increasing desperation to address their child’s autism-related struggles while being disappointed by conventional treatments. Autism is a complex neurobiologic disorder with a heterogeneous presentation for which there are no well-established pharmacologic treatments to address its core symptoms of social-communication impairments and restricted, repetitive behaviors/interests. With this in mind, it’s not surprising that studies indicate that at least 50% of families with an autistic child have tried complementary and alternative medicine (CAM) treatments. Notably, the higher the child-related stress, the more likely the families are to try CAM interventions (J. Child Neurology 2014;29:360-7) and higher use of CAM is associated with coexisting gastrointestinal problems, seizure disorders, and behavioral problems in youth with autism (Pediatrics 2012;130:S77-S82).
CAM treatments are defined by the National Center for Complementary and Integrative Health (nccih.nih.gov) as “a group of diverse medical and health care systems, practices, and products that are not presently considered to be a part of conventional medicine.” They may include biologically based therapies (dietary supplements, chelation, immune-modulating agents, special diets), mind-body medicine (acupuncture, biofeedback), energy medicine, and manipulative and body-based treatments (massage, chiropractic manipulation). Families who choose CAM interventions for their children with autism tend to try natural products, special diets, and/or mind and body practices.
Reviewing the literature surrounding CAM, there are few randomized controlled trials published, and you should be aware that evidence for most of these interventions is insufficient to make strong recommendations for or against their use. Certainly, some treatments considered as CAM can be effective in treating specific target symptoms that often co-occur in individuals with autism (using melatonin to address sleep difficulties) without major safety issues, but others are potentially dangerous and likely ineffective (chelation therapy, hyperbaric oxygen, mineral solutions). The National Autism Center has published a comprehensive analysis of autism interventions (www.nationalautismcenter.org) that can be helpful for parents and practitioners to make informed treatment decisions; their most recent 2015 review categorizes some CAM treatments as having “emerging” evidence for favorable outcomes (music therapy, massage therapy, exercise) and labels some CAM interventions as having little to no evidence to support their efficacy. Interestingly, gluten-free and casein free diets are included in this latter category. Families are frequently curious about such elimination diets, especially given the buzz in both the popular and scientific press about the gut-brain connection. Although these diets do not have strong evidence to support their use in managing core features of autism, investigators are examining whether there may be a subgroup of children with autism (those with gastrointestinal problems) who may achieve potential benefits. All in all, there’s a need for more robust research on this particular set of treatments. Families should be aware that if they chose to pursue an elimination diet, adherence for children who are inherently picky eaters may be challenging. Furthermore, although commonly labeled as safe, these diets could be linked with potentially harmful adverse effects such as nutritional deficits.
To help guide clinical decision making, it may be helpful for you to first consult the American Academy of Pediatrics 2001 policy statement, “Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability” (Pediatrics 2001;107:598-601) and then consider a range of variables when discussing the use of CAM treatments with families. Some authors classify treatments as being safe, easy, cheap, and sensible (SECS) versus being risky, unrealistic, difficult, and expensive (RUDE) (Contemporary Pediatrics 2004;21:61-72), and using these terms when engaging parents in treatment decisions can be instructive for all parties. For example, there is limited high-quality evidence that omega-3 fatty acid supplementation is effective in treating autism symptoms, but the fact that this can be easy, inexpensive, and relatively safe for families to use may ultimately inform your decision to support a family’s trial of this with close monitoring. Additionally, it is important to explore whether families are seeking to replace other therapies with something novel and new, or are they looking for something to complement existing treatments/services? You should always, while being mindful of a family’s needs, values, and resources, consider first and foremost the use of treatments with established efficacy. Certainly CAM treatments – particularly those that are nonbiologic (pet therapy) – may positively augment standard interventions without potential significant harm.
Clinical Pearl
With the increasing number of parents turning to CAM treatments for their children with autism (particularly when the parents themselves use CAM), you should be prepared to talk with families about their decision making and actively ask families if this is something that they’ve considered. Given that the research on many CAM treatments is in early stages, it’s not unique to perhaps feel ill prepared to make CAM recommendations to families. Often it’s helpful to share this “CAM illiteracy” with families and aim to work together in a nonjudgmental manner to evaluate and select individualized treatment programs based on factors of potential efficacy, safety, cost, and family values. Regardless of the intervention, you should establish, with all patients, reliable methods for documenting past trials of all treatments, evaluating target symptoms, monitoring clinical outcomes, and measuring adverse events.
You should work to provide realistic hope to families and acknowledge that some CAM treatments may work better for some children, but we often don’t have a great sense, from the current state-of-the-science of ASD treatment, as to who these kids may be.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont. He is the director of the university’s autism diagnostic clinic. Dr. Dickerson said he had no relevant financial disclosures. Contact Dr. Dickerson at [email protected].
Parenting a child with emotional and behavioral problems
Over the past several years, there has been increasing amounts of research documenting the caregiving challenges that accompany the day-to-day parenting of a child with special health needs and/or chronic medical conditions. Children who are diagnosed with emotional and behavioral problems (ranging from attention-deficit/hyperactivity disorder (ADHD) to autism – which also can be considered chronic conditions), can pose parenting challenges for even the most healthy, supportive, and committed parents. From the point of receiving a diagnosis to daily management of the range of symptoms and attempting to coordinate care with various providers, the emotional stress experienced by caregivers can be quite burdensome and may affect the functioning of the entire family. In an effort to achieve successful treatment outcomes for the child, it’s important to be mindful of this emotional stress and provide parents with tools to foster their own wellness and mental health while mitigating the risk for them developing their own health concerns.
Case summary
Bridget is a 10-year-old girl who presents with her single mother for a psychiatric consultation. Since early childhood, Bridget has demonstrated an array of behaviors that have affected her ability to engage with others socially; she was thought to be a temperamentally shy and sensitive toddler, and in elementary school, her mother describes the emergence of odd mental status changes and accompanying motor movements that were later diagnosed as complex-partial epilepsy. Since this diagnosis at the age of 6 years, despite receiving various antiepileptic treatment, Bridget has continued to present with an intractable seizure disorder. She is now prescribed a combination of benzodiazepines, cannabinoids, and other antiepileptic agents, but still has marked functional impairments. Behaviorally, it appears that Bridget has experienced some regression over the years and has been recently tested to have low-average intelligence and a neurocognitive profile characterized by attentional difficulties, executive impairments, and significant processing deficits.
Because of her complicated presentation, Bridget has been unable to attend school-based academic instruction, and her escalating levels of generalized worry have limited her ability to reliably interact with individuals outside of the family. These challenges also have posed difficulties for providers to perform thorough evaluations and provide Bridget with psychosocial interventions to address her anxiety and self-regulatory deficits. All in all, Bridget is a diagnostically complicated young girl. Her mother wishes to “figure things out,” and acknowledges having trouble managing her daughter’s increasingly defiant and unpredictable behaviors. In the past, setting limits and placing stress on Bridget have been thought to be etiologically related to seizure onset. Additionally, Bridget’s mother has been unable to find her own employment while providing care for her daughter and reports that financially, she isn’t sure how she can make ends meet while providing Bridget with medical marijuana. Bridget’s mother’s composure during the evaluation is applauded (particularly when her daughter’s defiant actions are readily appreciated), but she admits to feeling “exhausted.”
Discussion
Bridget’s case illustrates not only the complexities in attempting to understand and diagnose multifaceted neuropsychiatric phenomena, but also the struggles experienced by families who are challenged economically, socially, psychologically, and emotionally as a result of their child’s difficulties. Although caregiving and parenting is rife with rewarding opportunities for many family members, the provision of such nurturance can undoubtedly place parents at risk for significant hardships. Studies have demonstrated that caregiving demands are associated with poor health outcomes in adult caregivers (Ann. Behav. Med. 1997;19:110-6), and maternal cortisol levels in mothers of older children with autism were found to be significantly lower than normal and the hormonal dysregulation was associated with their child’s behavioral profile. Such findings are similar to those recognized in combat soldiers and others who experience enduring psychological distress (J. Autism Dev. Disord. 2010; 40:457-69).
Upon meeting with Bridget, it became clear that her mother required additional support and services to help care for her daughter’s difficult needs. Through seeking a diagnosis for her daughter, Bridget’s mother also was pursuing an understanding of her daughter’s strengths and struggles, and looking to partner with a provider who might be able to help her navigate the often complicated system of care. By gathering a comprehensive family history (assessing what mom’s vulnerabilities may be for developing her own mental health issues) and thoroughly assessing her current functioning with the Adult Self-Report and the Parenting Stress Index, as a provider, I was better informed to offer family-based treatment recommendations. Through self-reporting, Bridget’s mother endorsed her own mood complaints, occasional substance use, and a constellation of anxiety-based difficulties. We had a thoughtful discussion pertaining to elements of grief, fears, and guilt, which helped to lay the foundation for later exploring how Bridget may best be cared for in the future (such as residential placement). Bridget’s mother shared that she initially felt like a failure for seeking help and not “being able to parent” her daughter; supportive techniques were used to provide her with reassurance and validation.
Using Bridget’s mother’s strengths (resiliency, being a strong advocate for her daughter), other recommendations also were offered to help her to more effectively parent her child and avoid burnout. Not inclusive of suggestions directed towards Bridget individually, these recommendations included:
• Having mom seek her own psychotherapeutic and psychiatric care. Goals of her treatment would be to support her own wellness (through exercise, mindfulness, engagement in positive activities) and focus on developing healthy relationships. By getting her own anxiety under control, assessing her own parenting and coping styles, and additionally obtaining psychoeducation about anxiety disorders in children, mom is primed to develop more successful ways to address Bridget’s defiance and avoid enabling her daughter’s excessive worry while encouraging her to be more socially active.
• Finding respite providers for Bridget. Then mom has more opportunities to seek employment and participate in other out-of-the-home activities.
• Developing a relationship with the school district. This way mom can obtain appropriate supports and accommodations for Bridget to be educated outside the home.
• Exploring community resources through local agencies. This would help mom plan for the future, examine possible sources of financial support, and perhaps most importantly, obtain a treatment team leader and care coordinator.
• Enhancing social supports. This can be done via connections to local support groups.
Clinical pearl
It’s not surprising that parents of children with special needs experience high levels of stress. Be aware of how such stress can affect a parent’s ability to care for their child, and be mindful that a child’s wellness can be significantly mediated by parental wellness and health. When designing treatment plans, routinely assess family caregivers’ stress levels (including that of siblings and fathers) and evaluate other indicators of stress (such as sleep disturbances, weight change, apathy, and expression of negative emotion). Advocate for programs and systems of care that can address both parental and child mental health issues in a coordinated manner that also enhances family cohesion, reduces social isolation, and decreases parental marginalization.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington. He is the director of the university’s autism diagnostic clinic. Contact Dr. Dickerson at [email protected].
Over the past several years, there has been increasing amounts of research documenting the caregiving challenges that accompany the day-to-day parenting of a child with special health needs and/or chronic medical conditions. Children who are diagnosed with emotional and behavioral problems (ranging from attention-deficit/hyperactivity disorder (ADHD) to autism – which also can be considered chronic conditions), can pose parenting challenges for even the most healthy, supportive, and committed parents. From the point of receiving a diagnosis to daily management of the range of symptoms and attempting to coordinate care with various providers, the emotional stress experienced by caregivers can be quite burdensome and may affect the functioning of the entire family. In an effort to achieve successful treatment outcomes for the child, it’s important to be mindful of this emotional stress and provide parents with tools to foster their own wellness and mental health while mitigating the risk for them developing their own health concerns.
Case summary
Bridget is a 10-year-old girl who presents with her single mother for a psychiatric consultation. Since early childhood, Bridget has demonstrated an array of behaviors that have affected her ability to engage with others socially; she was thought to be a temperamentally shy and sensitive toddler, and in elementary school, her mother describes the emergence of odd mental status changes and accompanying motor movements that were later diagnosed as complex-partial epilepsy. Since this diagnosis at the age of 6 years, despite receiving various antiepileptic treatment, Bridget has continued to present with an intractable seizure disorder. She is now prescribed a combination of benzodiazepines, cannabinoids, and other antiepileptic agents, but still has marked functional impairments. Behaviorally, it appears that Bridget has experienced some regression over the years and has been recently tested to have low-average intelligence and a neurocognitive profile characterized by attentional difficulties, executive impairments, and significant processing deficits.
Because of her complicated presentation, Bridget has been unable to attend school-based academic instruction, and her escalating levels of generalized worry have limited her ability to reliably interact with individuals outside of the family. These challenges also have posed difficulties for providers to perform thorough evaluations and provide Bridget with psychosocial interventions to address her anxiety and self-regulatory deficits. All in all, Bridget is a diagnostically complicated young girl. Her mother wishes to “figure things out,” and acknowledges having trouble managing her daughter’s increasingly defiant and unpredictable behaviors. In the past, setting limits and placing stress on Bridget have been thought to be etiologically related to seizure onset. Additionally, Bridget’s mother has been unable to find her own employment while providing care for her daughter and reports that financially, she isn’t sure how she can make ends meet while providing Bridget with medical marijuana. Bridget’s mother’s composure during the evaluation is applauded (particularly when her daughter’s defiant actions are readily appreciated), but she admits to feeling “exhausted.”
Discussion
Bridget’s case illustrates not only the complexities in attempting to understand and diagnose multifaceted neuropsychiatric phenomena, but also the struggles experienced by families who are challenged economically, socially, psychologically, and emotionally as a result of their child’s difficulties. Although caregiving and parenting is rife with rewarding opportunities for many family members, the provision of such nurturance can undoubtedly place parents at risk for significant hardships. Studies have demonstrated that caregiving demands are associated with poor health outcomes in adult caregivers (Ann. Behav. Med. 1997;19:110-6), and maternal cortisol levels in mothers of older children with autism were found to be significantly lower than normal and the hormonal dysregulation was associated with their child’s behavioral profile. Such findings are similar to those recognized in combat soldiers and others who experience enduring psychological distress (J. Autism Dev. Disord. 2010; 40:457-69).
Upon meeting with Bridget, it became clear that her mother required additional support and services to help care for her daughter’s difficult needs. Through seeking a diagnosis for her daughter, Bridget’s mother also was pursuing an understanding of her daughter’s strengths and struggles, and looking to partner with a provider who might be able to help her navigate the often complicated system of care. By gathering a comprehensive family history (assessing what mom’s vulnerabilities may be for developing her own mental health issues) and thoroughly assessing her current functioning with the Adult Self-Report and the Parenting Stress Index, as a provider, I was better informed to offer family-based treatment recommendations. Through self-reporting, Bridget’s mother endorsed her own mood complaints, occasional substance use, and a constellation of anxiety-based difficulties. We had a thoughtful discussion pertaining to elements of grief, fears, and guilt, which helped to lay the foundation for later exploring how Bridget may best be cared for in the future (such as residential placement). Bridget’s mother shared that she initially felt like a failure for seeking help and not “being able to parent” her daughter; supportive techniques were used to provide her with reassurance and validation.
Using Bridget’s mother’s strengths (resiliency, being a strong advocate for her daughter), other recommendations also were offered to help her to more effectively parent her child and avoid burnout. Not inclusive of suggestions directed towards Bridget individually, these recommendations included:
• Having mom seek her own psychotherapeutic and psychiatric care. Goals of her treatment would be to support her own wellness (through exercise, mindfulness, engagement in positive activities) and focus on developing healthy relationships. By getting her own anxiety under control, assessing her own parenting and coping styles, and additionally obtaining psychoeducation about anxiety disorders in children, mom is primed to develop more successful ways to address Bridget’s defiance and avoid enabling her daughter’s excessive worry while encouraging her to be more socially active.
• Finding respite providers for Bridget. Then mom has more opportunities to seek employment and participate in other out-of-the-home activities.
• Developing a relationship with the school district. This way mom can obtain appropriate supports and accommodations for Bridget to be educated outside the home.
• Exploring community resources through local agencies. This would help mom plan for the future, examine possible sources of financial support, and perhaps most importantly, obtain a treatment team leader and care coordinator.
• Enhancing social supports. This can be done via connections to local support groups.
Clinical pearl
It’s not surprising that parents of children with special needs experience high levels of stress. Be aware of how such stress can affect a parent’s ability to care for their child, and be mindful that a child’s wellness can be significantly mediated by parental wellness and health. When designing treatment plans, routinely assess family caregivers’ stress levels (including that of siblings and fathers) and evaluate other indicators of stress (such as sleep disturbances, weight change, apathy, and expression of negative emotion). Advocate for programs and systems of care that can address both parental and child mental health issues in a coordinated manner that also enhances family cohesion, reduces social isolation, and decreases parental marginalization.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington. He is the director of the university’s autism diagnostic clinic. Contact Dr. Dickerson at [email protected].
Over the past several years, there has been increasing amounts of research documenting the caregiving challenges that accompany the day-to-day parenting of a child with special health needs and/or chronic medical conditions. Children who are diagnosed with emotional and behavioral problems (ranging from attention-deficit/hyperactivity disorder (ADHD) to autism – which also can be considered chronic conditions), can pose parenting challenges for even the most healthy, supportive, and committed parents. From the point of receiving a diagnosis to daily management of the range of symptoms and attempting to coordinate care with various providers, the emotional stress experienced by caregivers can be quite burdensome and may affect the functioning of the entire family. In an effort to achieve successful treatment outcomes for the child, it’s important to be mindful of this emotional stress and provide parents with tools to foster their own wellness and mental health while mitigating the risk for them developing their own health concerns.
Case summary
Bridget is a 10-year-old girl who presents with her single mother for a psychiatric consultation. Since early childhood, Bridget has demonstrated an array of behaviors that have affected her ability to engage with others socially; she was thought to be a temperamentally shy and sensitive toddler, and in elementary school, her mother describes the emergence of odd mental status changes and accompanying motor movements that were later diagnosed as complex-partial epilepsy. Since this diagnosis at the age of 6 years, despite receiving various antiepileptic treatment, Bridget has continued to present with an intractable seizure disorder. She is now prescribed a combination of benzodiazepines, cannabinoids, and other antiepileptic agents, but still has marked functional impairments. Behaviorally, it appears that Bridget has experienced some regression over the years and has been recently tested to have low-average intelligence and a neurocognitive profile characterized by attentional difficulties, executive impairments, and significant processing deficits.
Because of her complicated presentation, Bridget has been unable to attend school-based academic instruction, and her escalating levels of generalized worry have limited her ability to reliably interact with individuals outside of the family. These challenges also have posed difficulties for providers to perform thorough evaluations and provide Bridget with psychosocial interventions to address her anxiety and self-regulatory deficits. All in all, Bridget is a diagnostically complicated young girl. Her mother wishes to “figure things out,” and acknowledges having trouble managing her daughter’s increasingly defiant and unpredictable behaviors. In the past, setting limits and placing stress on Bridget have been thought to be etiologically related to seizure onset. Additionally, Bridget’s mother has been unable to find her own employment while providing care for her daughter and reports that financially, she isn’t sure how she can make ends meet while providing Bridget with medical marijuana. Bridget’s mother’s composure during the evaluation is applauded (particularly when her daughter’s defiant actions are readily appreciated), but she admits to feeling “exhausted.”
Discussion
Bridget’s case illustrates not only the complexities in attempting to understand and diagnose multifaceted neuropsychiatric phenomena, but also the struggles experienced by families who are challenged economically, socially, psychologically, and emotionally as a result of their child’s difficulties. Although caregiving and parenting is rife with rewarding opportunities for many family members, the provision of such nurturance can undoubtedly place parents at risk for significant hardships. Studies have demonstrated that caregiving demands are associated with poor health outcomes in adult caregivers (Ann. Behav. Med. 1997;19:110-6), and maternal cortisol levels in mothers of older children with autism were found to be significantly lower than normal and the hormonal dysregulation was associated with their child’s behavioral profile. Such findings are similar to those recognized in combat soldiers and others who experience enduring psychological distress (J. Autism Dev. Disord. 2010; 40:457-69).
Upon meeting with Bridget, it became clear that her mother required additional support and services to help care for her daughter’s difficult needs. Through seeking a diagnosis for her daughter, Bridget’s mother also was pursuing an understanding of her daughter’s strengths and struggles, and looking to partner with a provider who might be able to help her navigate the often complicated system of care. By gathering a comprehensive family history (assessing what mom’s vulnerabilities may be for developing her own mental health issues) and thoroughly assessing her current functioning with the Adult Self-Report and the Parenting Stress Index, as a provider, I was better informed to offer family-based treatment recommendations. Through self-reporting, Bridget’s mother endorsed her own mood complaints, occasional substance use, and a constellation of anxiety-based difficulties. We had a thoughtful discussion pertaining to elements of grief, fears, and guilt, which helped to lay the foundation for later exploring how Bridget may best be cared for in the future (such as residential placement). Bridget’s mother shared that she initially felt like a failure for seeking help and not “being able to parent” her daughter; supportive techniques were used to provide her with reassurance and validation.
Using Bridget’s mother’s strengths (resiliency, being a strong advocate for her daughter), other recommendations also were offered to help her to more effectively parent her child and avoid burnout. Not inclusive of suggestions directed towards Bridget individually, these recommendations included:
• Having mom seek her own psychotherapeutic and psychiatric care. Goals of her treatment would be to support her own wellness (through exercise, mindfulness, engagement in positive activities) and focus on developing healthy relationships. By getting her own anxiety under control, assessing her own parenting and coping styles, and additionally obtaining psychoeducation about anxiety disorders in children, mom is primed to develop more successful ways to address Bridget’s defiance and avoid enabling her daughter’s excessive worry while encouraging her to be more socially active.
• Finding respite providers for Bridget. Then mom has more opportunities to seek employment and participate in other out-of-the-home activities.
• Developing a relationship with the school district. This way mom can obtain appropriate supports and accommodations for Bridget to be educated outside the home.
• Exploring community resources through local agencies. This would help mom plan for the future, examine possible sources of financial support, and perhaps most importantly, obtain a treatment team leader and care coordinator.
• Enhancing social supports. This can be done via connections to local support groups.
Clinical pearl
It’s not surprising that parents of children with special needs experience high levels of stress. Be aware of how such stress can affect a parent’s ability to care for their child, and be mindful that a child’s wellness can be significantly mediated by parental wellness and health. When designing treatment plans, routinely assess family caregivers’ stress levels (including that of siblings and fathers) and evaluate other indicators of stress (such as sleep disturbances, weight change, apathy, and expression of negative emotion). Advocate for programs and systems of care that can address both parental and child mental health issues in a coordinated manner that also enhances family cohesion, reduces social isolation, and decreases parental marginalization.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont, Burlington. He is the director of the university’s autism diagnostic clinic. Contact Dr. Dickerson at [email protected].
Child Psychiatry Consult: Autism assessment
Introduction
Autism spectrum disorder is a neurodevelopmental condition characterized by a heterogeneous grouping of social-communication impairments and behavioral phenomena that are observed in early development and often accompanied by an array of co-occurring issues. The prevalence of autism spectrum disorder (ASD) has risen markedly in the last several years (1 in 68 per a 2014 CDC estimate), and the evidence base for early intervention and other treatment strategies supports the idea that a timely and appropriate diagnosis is critical for promoting positive outcomes for children and their families.
With ASD, there can be wide variety in a young child’s presenting symptoms. Although some youth clearly manifest the hallmark features of ASD, ever-changing development, complicated cognitive profiles, family difficulties, co-occurring mental health problems, and evolving nosology (such as DSM changes) can contribute to the difficulty providers encounter in fully interpreting and identifying ASD symptoms in the course of a typical primary care visit. This case example outlines assessment and diagnostic strategies that may help pediatricians to better understand the complexities of diagnosis, assessment, and treatment for children suspected of having ASD. Ideally, a diagnostic evaluation would quickly follow a standardized screening tool that is positive for concern for ASD (such as the Modified Checklist for Autism in Toddlers – Revised) between the ages of 18 and 24 months.
Case summary
Everett is a 4-year-old boy who presents to an autism diagnostic clinic after his parents expressed concerns about his behavior. Everett is described to be a rigid, stubborn, strong-willed, and easily frustrated boy who began to exhibit aggressive behaviors at 18 months of age. He continues to have almost daily temper tantrums. Notably, Everett did not begin to use single words with communicative intent until he was 24 months old. He will often repeat words nonfunctionally and utter nonsensical verbalizations while spinning in circles and rocking back and forth. Everett enjoys being around peers but has difficulties engaging appropriately with other children, exhibiting poor physical boundaries. Everett’s hearing and vision were previously tested to be without deficit, and there is no history of seizure activity or indication of an underlying metabolic disorder.
Discussion
Everett presents with some signs and symptoms to suggest ASD (namely his communication and language impairments accompanied by some atypical social relatedness and repetitive behaviors). His presentation, however, has many characteristics that while common to ASD are not entirely specific to the diagnosis in a preschooler, and could occur with other disorders. For example, Everett’s social difficulties could be the result of an emerging behavioral disorder (an oppositional defiant disorder) or a primary expressive language disorder, which may manifest with frustration intolerance due to communication difficulties.
With children like Everett, a comprehensive autism diagnostic assessment should be obtained and preferably be comprised of a minimum of two components – a caregiver interview and an observational assessment ideally conducted by an experienced clinical interdisciplinary team. Additionally, evaluations of adaptive skills, cognitive profile, family functioning, social-emotional/behavioral functioning, and sensory issues can be useful to inform treatment planning and diagnosis. Ultimately, the diagnosis of ASD is made after clinicians integrate available information and fully consider the range of differential diagnoses. Clinicians who may participate in the diagnostic process include developmental pediatricians, child psychiatrists, clinical psychologists, speech-language pathologists, and other allied health professionals.
Clinical guidelines suggest that gathering a thorough developmental history, assessing for the characteristic impairments that support an ASD diagnosis, and establishing current levels of functioning can be performed using the semistructured Autism Diagnostic Interview – Revised (ADI-R) with primary caregivers. Information about a child’s social interactions also can be obtained with the use of the Social Responsiveness Scale (SRS), which can yield multi-informant data that helps to capture a youth’s functioning and peer interactions in different settings, including home and school.
The observational assessment ideally utilizes the Autism Diagnostic Observation Schedule (ADOS), a standardized instrument that can evaluate domains of reciprocal social interaction, communication, restricted interests, and repetitive behaviors in a developmentally informed manner. Clinicians should be mindful that certain behaviors may not be displayed during the diagnostic evaluation, and as such, scoring on the ADOS should be integrated with other sources of information and interpreted within a developmental framework; no single result on one instrument is sufficient to make or break an autism diagnosis.
The above-mentioned tools were used in Everett’s assessment. Appraising the collected data, his scoring on the ADOS suggested an autism diagnosis, but information from the ADI-R and SRS were not conclusive. To further evaluate Everett, we incorporated a broad developmental evaluation tool, the Mullen Scales of Early Learning, which provided us with a lens through which to interpret his profile of impairments and strengths. Everett scored with average to above-average skills across all domains, which helped us conceptualize that his social, language, and behavioral struggles were not the result of a global developmental delay or intellectual disability.
Additionally, Everett’s family completed the Vineland Adaptive Behavior Scales (his adaptive socialization skills were a relative weakness, and motor skills were a strength) and Child Behavior Checklists, which revealed the endorsement of emotionally reactive and aggressive behavior symptoms from both parents. Everett’s parents’ mental wellness was assessed with Adult Behavior Checklists in order to provide informed family-based treatment recommendations.
In Everett’s evaluation, enduring challenges in the core symptom domains characterizing ASD were noted. His atypical social affect, limited social awareness, and repetitive patterns of behavior provided evidence that Everett met diagnostic criteria for ASD. Also noted were protective factors that promoted his well-being (he’s verbal, has the capacity to play imaginatively, presents with a supportive family, and demonstrates no significant cognitive deficiencies), which were incorporated into our treatment recommendations. Recommendations included enrollment in structured educational and behavioral interventions, and corresponding parent training treatments to help his caregivers manage his disruptive behaviors while reducing the risk for the development of further emotional/behavioral problems in the future.
Everett’s ASD diagnosis also warranted a referral for genetic testing and/or counseling to help the family to obtain information about the etiology of the disorder, screen for other conditions, and help guide appropriate medical management. There were no other indications to pursue additional medical, imaging, or neurological consultations.
Clinical pearl
For some children, the diagnosis of ASD is unclear. Problems arise in making an accurate diagnosis for a variety of reasons, and fully appreciating a child’s (or adolescent’s) developmental challenges can be difficult, especially given the considerable symptom overlap ASD has with other learning, medical, cognitive, or mental health diagnoses. These children require a diagnostic evaluation using a family-focused and culturally sensitive multidisciplinary approach that incorporates standardized tools. As a primary care provider, it can often be difficult to tease out symptoms and have the time to do a thorough assessment; primary providers should be aware of their local assessment expert resources and referral options.
Jeremiah Dickerson, M.D., a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont. Dr. Dickerson is the director of the university’s autism diagnostic clinic. Contact Dr. Dickerson at [email protected].
Introduction
Autism spectrum disorder is a neurodevelopmental condition characterized by a heterogeneous grouping of social-communication impairments and behavioral phenomena that are observed in early development and often accompanied by an array of co-occurring issues. The prevalence of autism spectrum disorder (ASD) has risen markedly in the last several years (1 in 68 per a 2014 CDC estimate), and the evidence base for early intervention and other treatment strategies supports the idea that a timely and appropriate diagnosis is critical for promoting positive outcomes for children and their families.
With ASD, there can be wide variety in a young child’s presenting symptoms. Although some youth clearly manifest the hallmark features of ASD, ever-changing development, complicated cognitive profiles, family difficulties, co-occurring mental health problems, and evolving nosology (such as DSM changes) can contribute to the difficulty providers encounter in fully interpreting and identifying ASD symptoms in the course of a typical primary care visit. This case example outlines assessment and diagnostic strategies that may help pediatricians to better understand the complexities of diagnosis, assessment, and treatment for children suspected of having ASD. Ideally, a diagnostic evaluation would quickly follow a standardized screening tool that is positive for concern for ASD (such as the Modified Checklist for Autism in Toddlers – Revised) between the ages of 18 and 24 months.
Case summary
Everett is a 4-year-old boy who presents to an autism diagnostic clinic after his parents expressed concerns about his behavior. Everett is described to be a rigid, stubborn, strong-willed, and easily frustrated boy who began to exhibit aggressive behaviors at 18 months of age. He continues to have almost daily temper tantrums. Notably, Everett did not begin to use single words with communicative intent until he was 24 months old. He will often repeat words nonfunctionally and utter nonsensical verbalizations while spinning in circles and rocking back and forth. Everett enjoys being around peers but has difficulties engaging appropriately with other children, exhibiting poor physical boundaries. Everett’s hearing and vision were previously tested to be without deficit, and there is no history of seizure activity or indication of an underlying metabolic disorder.
Discussion
Everett presents with some signs and symptoms to suggest ASD (namely his communication and language impairments accompanied by some atypical social relatedness and repetitive behaviors). His presentation, however, has many characteristics that while common to ASD are not entirely specific to the diagnosis in a preschooler, and could occur with other disorders. For example, Everett’s social difficulties could be the result of an emerging behavioral disorder (an oppositional defiant disorder) or a primary expressive language disorder, which may manifest with frustration intolerance due to communication difficulties.
With children like Everett, a comprehensive autism diagnostic assessment should be obtained and preferably be comprised of a minimum of two components – a caregiver interview and an observational assessment ideally conducted by an experienced clinical interdisciplinary team. Additionally, evaluations of adaptive skills, cognitive profile, family functioning, social-emotional/behavioral functioning, and sensory issues can be useful to inform treatment planning and diagnosis. Ultimately, the diagnosis of ASD is made after clinicians integrate available information and fully consider the range of differential diagnoses. Clinicians who may participate in the diagnostic process include developmental pediatricians, child psychiatrists, clinical psychologists, speech-language pathologists, and other allied health professionals.
Clinical guidelines suggest that gathering a thorough developmental history, assessing for the characteristic impairments that support an ASD diagnosis, and establishing current levels of functioning can be performed using the semistructured Autism Diagnostic Interview – Revised (ADI-R) with primary caregivers. Information about a child’s social interactions also can be obtained with the use of the Social Responsiveness Scale (SRS), which can yield multi-informant data that helps to capture a youth’s functioning and peer interactions in different settings, including home and school.
The observational assessment ideally utilizes the Autism Diagnostic Observation Schedule (ADOS), a standardized instrument that can evaluate domains of reciprocal social interaction, communication, restricted interests, and repetitive behaviors in a developmentally informed manner. Clinicians should be mindful that certain behaviors may not be displayed during the diagnostic evaluation, and as such, scoring on the ADOS should be integrated with other sources of information and interpreted within a developmental framework; no single result on one instrument is sufficient to make or break an autism diagnosis.
The above-mentioned tools were used in Everett’s assessment. Appraising the collected data, his scoring on the ADOS suggested an autism diagnosis, but information from the ADI-R and SRS were not conclusive. To further evaluate Everett, we incorporated a broad developmental evaluation tool, the Mullen Scales of Early Learning, which provided us with a lens through which to interpret his profile of impairments and strengths. Everett scored with average to above-average skills across all domains, which helped us conceptualize that his social, language, and behavioral struggles were not the result of a global developmental delay or intellectual disability.
Additionally, Everett’s family completed the Vineland Adaptive Behavior Scales (his adaptive socialization skills were a relative weakness, and motor skills were a strength) and Child Behavior Checklists, which revealed the endorsement of emotionally reactive and aggressive behavior symptoms from both parents. Everett’s parents’ mental wellness was assessed with Adult Behavior Checklists in order to provide informed family-based treatment recommendations.
In Everett’s evaluation, enduring challenges in the core symptom domains characterizing ASD were noted. His atypical social affect, limited social awareness, and repetitive patterns of behavior provided evidence that Everett met diagnostic criteria for ASD. Also noted were protective factors that promoted his well-being (he’s verbal, has the capacity to play imaginatively, presents with a supportive family, and demonstrates no significant cognitive deficiencies), which were incorporated into our treatment recommendations. Recommendations included enrollment in structured educational and behavioral interventions, and corresponding parent training treatments to help his caregivers manage his disruptive behaviors while reducing the risk for the development of further emotional/behavioral problems in the future.
Everett’s ASD diagnosis also warranted a referral for genetic testing and/or counseling to help the family to obtain information about the etiology of the disorder, screen for other conditions, and help guide appropriate medical management. There were no other indications to pursue additional medical, imaging, or neurological consultations.
Clinical pearl
For some children, the diagnosis of ASD is unclear. Problems arise in making an accurate diagnosis for a variety of reasons, and fully appreciating a child’s (or adolescent’s) developmental challenges can be difficult, especially given the considerable symptom overlap ASD has with other learning, medical, cognitive, or mental health diagnoses. These children require a diagnostic evaluation using a family-focused and culturally sensitive multidisciplinary approach that incorporates standardized tools. As a primary care provider, it can often be difficult to tease out symptoms and have the time to do a thorough assessment; primary providers should be aware of their local assessment expert resources and referral options.
Jeremiah Dickerson, M.D., a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont. Dr. Dickerson is the director of the university’s autism diagnostic clinic. Contact Dr. Dickerson at [email protected].
Introduction
Autism spectrum disorder is a neurodevelopmental condition characterized by a heterogeneous grouping of social-communication impairments and behavioral phenomena that are observed in early development and often accompanied by an array of co-occurring issues. The prevalence of autism spectrum disorder (ASD) has risen markedly in the last several years (1 in 68 per a 2014 CDC estimate), and the evidence base for early intervention and other treatment strategies supports the idea that a timely and appropriate diagnosis is critical for promoting positive outcomes for children and their families.
With ASD, there can be wide variety in a young child’s presenting symptoms. Although some youth clearly manifest the hallmark features of ASD, ever-changing development, complicated cognitive profiles, family difficulties, co-occurring mental health problems, and evolving nosology (such as DSM changes) can contribute to the difficulty providers encounter in fully interpreting and identifying ASD symptoms in the course of a typical primary care visit. This case example outlines assessment and diagnostic strategies that may help pediatricians to better understand the complexities of diagnosis, assessment, and treatment for children suspected of having ASD. Ideally, a diagnostic evaluation would quickly follow a standardized screening tool that is positive for concern for ASD (such as the Modified Checklist for Autism in Toddlers – Revised) between the ages of 18 and 24 months.
Case summary
Everett is a 4-year-old boy who presents to an autism diagnostic clinic after his parents expressed concerns about his behavior. Everett is described to be a rigid, stubborn, strong-willed, and easily frustrated boy who began to exhibit aggressive behaviors at 18 months of age. He continues to have almost daily temper tantrums. Notably, Everett did not begin to use single words with communicative intent until he was 24 months old. He will often repeat words nonfunctionally and utter nonsensical verbalizations while spinning in circles and rocking back and forth. Everett enjoys being around peers but has difficulties engaging appropriately with other children, exhibiting poor physical boundaries. Everett’s hearing and vision were previously tested to be without deficit, and there is no history of seizure activity or indication of an underlying metabolic disorder.
Discussion
Everett presents with some signs and symptoms to suggest ASD (namely his communication and language impairments accompanied by some atypical social relatedness and repetitive behaviors). His presentation, however, has many characteristics that while common to ASD are not entirely specific to the diagnosis in a preschooler, and could occur with other disorders. For example, Everett’s social difficulties could be the result of an emerging behavioral disorder (an oppositional defiant disorder) or a primary expressive language disorder, which may manifest with frustration intolerance due to communication difficulties.
With children like Everett, a comprehensive autism diagnostic assessment should be obtained and preferably be comprised of a minimum of two components – a caregiver interview and an observational assessment ideally conducted by an experienced clinical interdisciplinary team. Additionally, evaluations of adaptive skills, cognitive profile, family functioning, social-emotional/behavioral functioning, and sensory issues can be useful to inform treatment planning and diagnosis. Ultimately, the diagnosis of ASD is made after clinicians integrate available information and fully consider the range of differential diagnoses. Clinicians who may participate in the diagnostic process include developmental pediatricians, child psychiatrists, clinical psychologists, speech-language pathologists, and other allied health professionals.
Clinical guidelines suggest that gathering a thorough developmental history, assessing for the characteristic impairments that support an ASD diagnosis, and establishing current levels of functioning can be performed using the semistructured Autism Diagnostic Interview – Revised (ADI-R) with primary caregivers. Information about a child’s social interactions also can be obtained with the use of the Social Responsiveness Scale (SRS), which can yield multi-informant data that helps to capture a youth’s functioning and peer interactions in different settings, including home and school.
The observational assessment ideally utilizes the Autism Diagnostic Observation Schedule (ADOS), a standardized instrument that can evaluate domains of reciprocal social interaction, communication, restricted interests, and repetitive behaviors in a developmentally informed manner. Clinicians should be mindful that certain behaviors may not be displayed during the diagnostic evaluation, and as such, scoring on the ADOS should be integrated with other sources of information and interpreted within a developmental framework; no single result on one instrument is sufficient to make or break an autism diagnosis.
The above-mentioned tools were used in Everett’s assessment. Appraising the collected data, his scoring on the ADOS suggested an autism diagnosis, but information from the ADI-R and SRS were not conclusive. To further evaluate Everett, we incorporated a broad developmental evaluation tool, the Mullen Scales of Early Learning, which provided us with a lens through which to interpret his profile of impairments and strengths. Everett scored with average to above-average skills across all domains, which helped us conceptualize that his social, language, and behavioral struggles were not the result of a global developmental delay or intellectual disability.
Additionally, Everett’s family completed the Vineland Adaptive Behavior Scales (his adaptive socialization skills were a relative weakness, and motor skills were a strength) and Child Behavior Checklists, which revealed the endorsement of emotionally reactive and aggressive behavior symptoms from both parents. Everett’s parents’ mental wellness was assessed with Adult Behavior Checklists in order to provide informed family-based treatment recommendations.
In Everett’s evaluation, enduring challenges in the core symptom domains characterizing ASD were noted. His atypical social affect, limited social awareness, and repetitive patterns of behavior provided evidence that Everett met diagnostic criteria for ASD. Also noted were protective factors that promoted his well-being (he’s verbal, has the capacity to play imaginatively, presents with a supportive family, and demonstrates no significant cognitive deficiencies), which were incorporated into our treatment recommendations. Recommendations included enrollment in structured educational and behavioral interventions, and corresponding parent training treatments to help his caregivers manage his disruptive behaviors while reducing the risk for the development of further emotional/behavioral problems in the future.
Everett’s ASD diagnosis also warranted a referral for genetic testing and/or counseling to help the family to obtain information about the etiology of the disorder, screen for other conditions, and help guide appropriate medical management. There were no other indications to pursue additional medical, imaging, or neurological consultations.
Clinical pearl
For some children, the diagnosis of ASD is unclear. Problems arise in making an accurate diagnosis for a variety of reasons, and fully appreciating a child’s (or adolescent’s) developmental challenges can be difficult, especially given the considerable symptom overlap ASD has with other learning, medical, cognitive, or mental health diagnoses. These children require a diagnostic evaluation using a family-focused and culturally sensitive multidisciplinary approach that incorporates standardized tools. As a primary care provider, it can often be difficult to tease out symptoms and have the time to do a thorough assessment; primary providers should be aware of their local assessment expert resources and referral options.
Jeremiah Dickerson, M.D., a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont. Dr. Dickerson is the director of the university’s autism diagnostic clinic. Contact Dr. Dickerson at [email protected].
