Autism Demands Attention in the Emergency Department

When a child with autism arrives at the emergency department, the approach to care should be as individualized as the treatment itself.

The ED itself is almost a caricature of everything that can tip the delicate behavioral balance for children on the autism spectrum: bright lights, loud noises, and scurrying strangers who want to get close with dangerous-looking implements. Combine that sensory onslaught with the pain of an injury or illness, and the result can be a bomb that threatens the child’s optimal care at least, and the safety of staff at worst.

"When you are caring for a child with autism, you are a stranger in a strange land," said Dr. Thomas Chun, an emergency physician at the Hasbro Children’s Hospital, Providence, R.I. "You don’t know who you are to them, or who they are, or where they are," on the autism spectrum.

A core trait of autism is hypo- or hyperreactivity to stimuli, according to Dr. Joseph Horrigan, a child psychiatrist who is head of medical research for the advocacy group, Autism Speaks. "The hyperreactivity can be really challenging for many children with autism and their medical caregivers. In conjunction with this, it’s not at all unusual for these children to have anxiety, so there is a very low threshold for catastrophic stress responses, particularly if there is some sort of intellectual disability, or no decent method of communication."

Absence of social reciprocity is another unifying characteristic of autism, Dr. Chun said at a meeting sponsored by the American College of Emergency Physicians. But that characteristic can be expressed in a multitude of ways, from completely withdrawn and silent, to parroting adult speech, to full-blown violence. "It’s an incredibly wide spectrum, and in order to help that child, you need to know" where he or she falls on that spectrum. In this maze, the parents should be your most-trusted guides, he said.

"They have been dealing with this the child’s entire life. They know what calms and bothers him. They know the cognitive level, the best ways to communicate, what scares and how to soothe. It’s always worthwhile to take the time to ask them how they think their child will react to the situation."

In a perfect world, parents will have incorporated desensitization into their teaching about how a doctor’s or dentist’s visit will go. But as emergency physicians know all too well, the world is far from perfect. And when an emergency arises, there’s usually little time for parents to rehearse a trip to the ED – which means the physician is responsible for at least some destressing.

"Systematic desensitization can be very helpful here. Walk in, say hi, talk to the parents, and then walk out for a while. Let the parents play with the stethoscope and have them introduce it to the child," Dr. Chun advised. Although this approach takes some time, that delay could be nothing compared with the time consumed by a full-blown encounter with a stressed-out, uncooperative child. "I’m betting that a lot of the things we spend time on actually decrease time spent with that patient in the long run."

Interventions like these work best if everyone in the ED is on the same page, Dr. Chun said. His hospital instituted a 16-hour training program designed to decrease the need for patient restraint, and the injuries incurred during restraint. The program helped prevent or minimize incidents by teaching de-escalation techniques and avoidance of power struggles; it also included a debriefing component. In the year after implementing the program, the hospital saw an 83% decrease in patient injury due to restraint.

Practically Speaking

It’s one thing to intellectualize what interventions should look like, and entirely another to put them into action. Fortunately, said Dr. Horrigan, many of the more useful modifications are both easy and inexpensive.

Because overstimulation is a key component in troublesome interactions, one easy and very effective intervention is simply to reduce it, Dr. Horrigan said.

"Simply find a quiet place" to examine and treat the child in the parents’ company, he said in an interview. "A bay with a curtain in the ED is really not a good fit for a child with autism."

"When you are caring for a child with autism, you are a stranger in a strange land."

A private exam room is optimal; facilities that don’t have that luxury can make good use of a quiet family waiting room. Dim the ambient lighting, he said, and use a procedure lamp instead of glaring overhead fixtures.

Dr. Chun said some children enjoy the feeling of pressure all around their bodies. A weighted blanket is one way to achieve this, but a radiologist’s apron or a beanbag chair can be just as effective. If the child brings in a beloved toy or blanket from home, keep it close at hand to take full advantage of its soothing properties.

"Some children like light pressure," Dr. Chun noted. "For these, an electric foot massager or even a paint roller can be a good idea. Some like rocking, so we have a rocking chair with a small weighted blanket."

Say What?

Communication deficit is a universal manifestation of autism spectrum disorders. Children with autism tend to think in pictures or symbols rather than words. Many make use of adaptive communication tools at home, and it’s a good idea to have a few types of these in the ED.

A picture book with images of hospital personnel and procedures can be very helpful. An effective and virtually free method is to take photographs of the treatment bays, medical tools, and people with whom the child might interact; showing the child these is a good way to help her understand what to expect, Dr. Chun said.

"Go through the ED and take a bunch of pictures, laminate them, and you have an instant communication system. You can prepare a child for almost any procedure this way."

Even if there isn’t much reciprocal communication, most children with autism are taking in spoken language, so be sure to talk them through their experience, giving them descriptions of medical tools and devices, how they’re going to be used, and what procedures might feel like.

Pragmatic Procedures

Trust is the basis for any successful medical treatment, but trust is something children with autism don’t readily give, said Dr. Alan Rosenblatt, a neurodevelopmental pediatrician practicing in Skokie, Ill.

"Some of this will have to be done at a distance because some of these children don’t want to be touched by strangers," he said in an interview. "Only after a certain level of trust is established can that be done. You must be very careful about intruding too quickly and too intensely into the child’s personal space."

Fingers and toes are a good place to start the exam, he said. "That’s one of the tricks I use. I start at the periphery – away from the trunk and face – and slowly move more centrally so that they’re not overwhelmed all at once. Even with this approach, certain kids are so overwhelmed by anxiety that there is going to be resistance when you touch any part of them."

Drawing blood can be particularly troublesome. The Autism Treatment Network, part of Autism Speaks, offers a free guide to effective phlebotomy technique in children with autism. The pamphlet briefly explains how distraction, relaxation, and picture communication can improve results for everyone involved.

(The publication is available online.)

The Center for Autism and Related Disabilities, an autism support center affiliated with the University of Miami, also provides a "tip pamphlet" for EDs. "Autism and the Hospital Emergency Room" includes background information on autism, as well as lots of practical tips on making an ED more "autism friendly," Dr. Horrigan said.

Managing Medications

Children with autism don’t always react predictably to medications, especially anesthetics and psychotropic drugs, Dr. Horrigan said.

"A bay with a curtain in the ED is really not a good fit for a child with autism."

The small-dose benzodiazepine that might help a normally developing child relax could send an autistic child over the edge. "These individuals can have unique, idiosyncratic responses to medicines. Some of the medications a ‘normal’ child would get could provoke serious adverse reactions in a child with autism – especially a younger child."

Topical anesthetics, if appropriate, are usually a better choice for these children. Systemic medications must be handled very carefully – even antihistamines can provoke serious agitation and even violence.

On the other hand, some children with autism are so withdrawn that they may not express anxiety or pain, he said. But this doesn’t mean forgoing medication on the assumption that withholding it might actually be less stressful than giving it.

"Medications can and should be used in the same way as they are used on anyone else, to improve comfort and alleviate distress," Dr. Horrigan said. "But we must be thoughtful about the drug selection and dose. It requires a more sophisticated approach."

Generally, the rule should be to start with a lower test dose than usual, observe its effect and any reactions, and then increase the dose. Again, the parent is the provider’s best guide. "It’s critical to get as much medical history as possible about any past adverse reaction," he said.

For very agitated children, an atypical antipsychotic may be helpful. Risperidone and aripiprazole are the only two approved for use in children with autism spectrum disorders. Both are available in oral dissolvable tablets.

Oral ketamine – alone or in conjunction with midazolam – is a possibility for the combative child, Dr. Chun noted. "It’s not evidence based, but some say that it should be a first-line drug," for these cases.

A Matter of Time

Autism is on the rise in the United States, according to a new report from the Centers for Disease Control and Prevention (MMWR 2012;61[SS-3]:1-19). The report estimated a 78% increase in cases from 2002-2008. The report suggests that one in every 88 children has some form of autism spectrum disorder.

"Emergency physicians are going to be seeing more and more children with autism. That is a fact. This is not a rare disorder we’re talking about. It’s out there, the prevalence is growing, and you’re going to see it" in the emergency department, Dr. Horrigan said.

None of the physicians interviewed for this article reported any relevant financial conflicts.

When a child with autism arrives at the emergency department, the approach to care should be as individualized as the treatment itself.

The ED itself is almost a caricature of everything that can tip the delicate behavioral balance for children on the autism spectrum: bright lights, loud noises, and scurrying strangers who want to get close with dangerous-looking implements. Combine that sensory onslaught with the pain of an injury or illness, and the result can be a bomb that threatens the child’s optimal care at least, and the safety of staff at worst.

"When you are caring for a child with autism, you are a stranger in a strange land," said Dr. Thomas Chun, an emergency physician at the Hasbro Children’s Hospital, Providence, R.I. "You don’t know who you are to them, or who they are, or where they are," on the autism spectrum.

A core trait of autism is hypo- or hyperreactivity to stimuli, according to Dr. Joseph Horrigan, a child psychiatrist who is head of medical research for the advocacy group, Autism Speaks. "The hyperreactivity can be really challenging for many children with autism and their medical caregivers. In conjunction with this, it’s not at all unusual for these children to have anxiety, so there is a very low threshold for catastrophic stress responses, particularly if there is some sort of intellectual disability, or no decent method of communication."

Absence of social reciprocity is another unifying characteristic of autism, Dr. Chun said at a meeting sponsored by the American College of Emergency Physicians. But that characteristic can be expressed in a multitude of ways, from completely withdrawn and silent, to parroting adult speech, to full-blown violence. "It’s an incredibly wide spectrum, and in order to help that child, you need to know" where he or she falls on that spectrum. In this maze, the parents should be your most-trusted guides, he said.

"They have been dealing with this the child’s entire life. They know what calms and bothers him. They know the cognitive level, the best ways to communicate, what scares and how to soothe. It’s always worthwhile to take the time to ask them how they think their child will react to the situation."

In a perfect world, parents will have incorporated desensitization into their teaching about how a doctor’s or dentist’s visit will go. But as emergency physicians know all too well, the world is far from perfect. And when an emergency arises, there’s usually little time for parents to rehearse a trip to the ED – which means the physician is responsible for at least some destressing.

"Systematic desensitization can be very helpful here. Walk in, say hi, talk to the parents, and then walk out for a while. Let the parents play with the stethoscope and have them introduce it to the child," Dr. Chun advised. Although this approach takes some time, that delay could be nothing compared with the time consumed by a full-blown encounter with a stressed-out, uncooperative child. "I’m betting that a lot of the things we spend time on actually decrease time spent with that patient in the long run."

Interventions like these work best if everyone in the ED is on the same page, Dr. Chun said. His hospital instituted a 16-hour training program designed to decrease the need for patient restraint, and the injuries incurred during restraint. The program helped prevent or minimize incidents by teaching de-escalation techniques and avoidance of power struggles; it also included a debriefing component. In the year after implementing the program, the hospital saw an 83% decrease in patient injury due to restraint.

Practically Speaking

It’s one thing to intellectualize what interventions should look like, and entirely another to put them into action. Fortunately, said Dr. Horrigan, many of the more useful modifications are both easy and inexpensive.

Because overstimulation is a key component in troublesome interactions, one easy and very effective intervention is simply to reduce it, Dr. Horrigan said.

"Simply find a quiet place" to examine and treat the child in the parents’ company, he said in an interview. "A bay with a curtain in the ED is really not a good fit for a child with autism."

"When you are caring for a child with autism, you are a stranger in a strange land."

A private exam room is optimal; facilities that don’t have that luxury can make good use of a quiet family waiting room. Dim the ambient lighting, he said, and use a procedure lamp instead of glaring overhead fixtures.

Dr. Chun said some children enjoy the feeling of pressure all around their bodies. A weighted blanket is one way to achieve this, but a radiologist’s apron or a beanbag chair can be just as effective. If the child brings in a beloved toy or blanket from home, keep it close at hand to take full advantage of its soothing properties.

"Some children like light pressure," Dr. Chun noted. "For these, an electric foot massager or even a paint roller can be a good idea. Some like rocking, so we have a rocking chair with a small weighted blanket."

Say What?

Communication deficit is a universal manifestation of autism spectrum disorders. Children with autism tend to think in pictures or symbols rather than words. Many make use of adaptive communication tools at home, and it’s a good idea to have a few types of these in the ED.

A picture book with images of hospital personnel and procedures can be very helpful. An effective and virtually free method is to take photographs of the treatment bays, medical tools, and people with whom the child might interact; showing the child these is a good way to help her understand what to expect, Dr. Chun said.

"Go through the ED and take a bunch of pictures, laminate them, and you have an instant communication system. You can prepare a child for almost any procedure this way."

Even if there isn’t much reciprocal communication, most children with autism are taking in spoken language, so be sure to talk them through their experience, giving them descriptions of medical tools and devices, how they’re going to be used, and what procedures might feel like.

Pragmatic Procedures

Trust is the basis for any successful medical treatment, but trust is something children with autism don’t readily give, said Dr. Alan Rosenblatt, a neurodevelopmental pediatrician practicing in Skokie, Ill.

"Some of this will have to be done at a distance because some of these children don’t want to be touched by strangers," he said in an interview. "Only after a certain level of trust is established can that be done. You must be very careful about intruding too quickly and too intensely into the child’s personal space."

Fingers and toes are a good place to start the exam, he said. "That’s one of the tricks I use. I start at the periphery – away from the trunk and face – and slowly move more centrally so that they’re not overwhelmed all at once. Even with this approach, certain kids are so overwhelmed by anxiety that there is going to be resistance when you touch any part of them."

Drawing blood can be particularly troublesome. The Autism Treatment Network, part of Autism Speaks, offers a free guide to effective phlebotomy technique in children with autism. The pamphlet briefly explains how distraction, relaxation, and picture communication can improve results for everyone involved.

(The publication is available online.)

The Center for Autism and Related Disabilities, an autism support center affiliated with the University of Miami, also provides a "tip pamphlet" for EDs. "Autism and the Hospital Emergency Room" includes background information on autism, as well as lots of practical tips on making an ED more "autism friendly," Dr. Horrigan said.

Managing Medications

Children with autism don’t always react predictably to medications, especially anesthetics and psychotropic drugs, Dr. Horrigan said.

"A bay with a curtain in the ED is really not a good fit for a child with autism."

The small-dose benzodiazepine that might help a normally developing child relax could send an autistic child over the edge. "These individuals can have unique, idiosyncratic responses to medicines. Some of the medications a ‘normal’ child would get could provoke serious adverse reactions in a child with autism – especially a younger child."

Topical anesthetics, if appropriate, are usually a better choice for these children. Systemic medications must be handled very carefully – even antihistamines can provoke serious agitation and even violence.

On the other hand, some children with autism are so withdrawn that they may not express anxiety or pain, he said. But this doesn’t mean forgoing medication on the assumption that withholding it might actually be less stressful than giving it.

"Medications can and should be used in the same way as they are used on anyone else, to improve comfort and alleviate distress," Dr. Horrigan said. "But we must be thoughtful about the drug selection and dose. It requires a more sophisticated approach."

Generally, the rule should be to start with a lower test dose than usual, observe its effect and any reactions, and then increase the dose. Again, the parent is the provider’s best guide. "It’s critical to get as much medical history as possible about any past adverse reaction," he said.

For very agitated children, an atypical antipsychotic may be helpful. Risperidone and aripiprazole are the only two approved for use in children with autism spectrum disorders. Both are available in oral dissolvable tablets.

Oral ketamine – alone or in conjunction with midazolam – is a possibility for the combative child, Dr. Chun noted. "It’s not evidence based, but some say that it should be a first-line drug," for these cases.

A Matter of Time

Autism is on the rise in the United States, according to a new report from the Centers for Disease Control and Prevention (MMWR 2012;61[SS-3]:1-19). The report estimated a 78% increase in cases from 2002-2008. The report suggests that one in every 88 children has some form of autism spectrum disorder.

"Emergency physicians are going to be seeing more and more children with autism. That is a fact. This is not a rare disorder we’re talking about. It’s out there, the prevalence is growing, and you’re going to see it" in the emergency department, Dr. Horrigan said.

None of the physicians interviewed for this article reported any relevant financial conflicts.

When a child with autism arrives at the emergency department, the approach to care should be as individualized as the treatment itself.

The ED itself is almost a caricature of everything that can tip the delicate behavioral balance for children on the autism spectrum: bright lights, loud noises, and scurrying strangers who want to get close with dangerous-looking implements. Combine that sensory onslaught with the pain of an injury or illness, and the result can be a bomb that threatens the child’s optimal care at least, and the safety of staff at worst.

"When you are caring for a child with autism, you are a stranger in a strange land," said Dr. Thomas Chun, an emergency physician at the Hasbro Children’s Hospital, Providence, R.I. "You don’t know who you are to them, or who they are, or where they are," on the autism spectrum.

A core trait of autism is hypo- or hyperreactivity to stimuli, according to Dr. Joseph Horrigan, a child psychiatrist who is head of medical research for the advocacy group, Autism Speaks. "The hyperreactivity can be really challenging for many children with autism and their medical caregivers. In conjunction with this, it’s not at all unusual for these children to have anxiety, so there is a very low threshold for catastrophic stress responses, particularly if there is some sort of intellectual disability, or no decent method of communication."

Absence of social reciprocity is another unifying characteristic of autism, Dr. Chun said at a meeting sponsored by the American College of Emergency Physicians. But that characteristic can be expressed in a multitude of ways, from completely withdrawn and silent, to parroting adult speech, to full-blown violence. "It’s an incredibly wide spectrum, and in order to help that child, you need to know" where he or she falls on that spectrum. In this maze, the parents should be your most-trusted guides, he said.

"They have been dealing with this the child’s entire life. They know what calms and bothers him. They know the cognitive level, the best ways to communicate, what scares and how to soothe. It’s always worthwhile to take the time to ask them how they think their child will react to the situation."

In a perfect world, parents will have incorporated desensitization into their teaching about how a doctor’s or dentist’s visit will go. But as emergency physicians know all too well, the world is far from perfect. And when an emergency arises, there’s usually little time for parents to rehearse a trip to the ED – which means the physician is responsible for at least some destressing.

"Systematic desensitization can be very helpful here. Walk in, say hi, talk to the parents, and then walk out for a while. Let the parents play with the stethoscope and have them introduce it to the child," Dr. Chun advised. Although this approach takes some time, that delay could be nothing compared with the time consumed by a full-blown encounter with a stressed-out, uncooperative child. "I’m betting that a lot of the things we spend time on actually decrease time spent with that patient in the long run."

Interventions like these work best if everyone in the ED is on the same page, Dr. Chun said. His hospital instituted a 16-hour training program designed to decrease the need for patient restraint, and the injuries incurred during restraint. The program helped prevent or minimize incidents by teaching de-escalation techniques and avoidance of power struggles; it also included a debriefing component. In the year after implementing the program, the hospital saw an 83% decrease in patient injury due to restraint.

Practically Speaking

It’s one thing to intellectualize what interventions should look like, and entirely another to put them into action. Fortunately, said Dr. Horrigan, many of the more useful modifications are both easy and inexpensive.

Because overstimulation is a key component in troublesome interactions, one easy and very effective intervention is simply to reduce it, Dr. Horrigan said.

"Simply find a quiet place" to examine and treat the child in the parents’ company, he said in an interview. "A bay with a curtain in the ED is really not a good fit for a child with autism."

"When you are caring for a child with autism, you are a stranger in a strange land."

A private exam room is optimal; facilities that don’t have that luxury can make good use of a quiet family waiting room. Dim the ambient lighting, he said, and use a procedure lamp instead of glaring overhead fixtures.

Dr. Chun said some children enjoy the feeling of pressure all around their bodies. A weighted blanket is one way to achieve this, but a radiologist’s apron or a beanbag chair can be just as effective. If the child brings in a beloved toy or blanket from home, keep it close at hand to take full advantage of its soothing properties.

"Some children like light pressure," Dr. Chun noted. "For these, an electric foot massager or even a paint roller can be a good idea. Some like rocking, so we have a rocking chair with a small weighted blanket."

Say What?

Communication deficit is a universal manifestation of autism spectrum disorders. Children with autism tend to think in pictures or symbols rather than words. Many make use of adaptive communication tools at home, and it’s a good idea to have a few types of these in the ED.

A picture book with images of hospital personnel and procedures can be very helpful. An effective and virtually free method is to take photographs of the treatment bays, medical tools, and people with whom the child might interact; showing the child these is a good way to help her understand what to expect, Dr. Chun said.

"Go through the ED and take a bunch of pictures, laminate them, and you have an instant communication system. You can prepare a child for almost any procedure this way."

Even if there isn’t much reciprocal communication, most children with autism are taking in spoken language, so be sure to talk them through their experience, giving them descriptions of medical tools and devices, how they’re going to be used, and what procedures might feel like.

Pragmatic Procedures

Trust is the basis for any successful medical treatment, but trust is something children with autism don’t readily give, said Dr. Alan Rosenblatt, a neurodevelopmental pediatrician practicing in Skokie, Ill.

"Some of this will have to be done at a distance because some of these children don’t want to be touched by strangers," he said in an interview. "Only after a certain level of trust is established can that be done. You must be very careful about intruding too quickly and too intensely into the child’s personal space."

Fingers and toes are a good place to start the exam, he said. "That’s one of the tricks I use. I start at the periphery – away from the trunk and face – and slowly move more centrally so that they’re not overwhelmed all at once. Even with this approach, certain kids are so overwhelmed by anxiety that there is going to be resistance when you touch any part of them."

Drawing blood can be particularly troublesome. The Autism Treatment Network, part of Autism Speaks, offers a free guide to effective phlebotomy technique in children with autism. The pamphlet briefly explains how distraction, relaxation, and picture communication can improve results for everyone involved.

(The publication is available online.)

The Center for Autism and Related Disabilities, an autism support center affiliated with the University of Miami, also provides a "tip pamphlet" for EDs. "Autism and the Hospital Emergency Room" includes background information on autism, as well as lots of practical tips on making an ED more "autism friendly," Dr. Horrigan said.

Managing Medications

Children with autism don’t always react predictably to medications, especially anesthetics and psychotropic drugs, Dr. Horrigan said.

"A bay with a curtain in the ED is really not a good fit for a child with autism."

The small-dose benzodiazepine that might help a normally developing child relax could send an autistic child over the edge. "These individuals can have unique, idiosyncratic responses to medicines. Some of the medications a ‘normal’ child would get could provoke serious adverse reactions in a child with autism – especially a younger child."

Topical anesthetics, if appropriate, are usually a better choice for these children. Systemic medications must be handled very carefully – even antihistamines can provoke serious agitation and even violence.

On the other hand, some children with autism are so withdrawn that they may not express anxiety or pain, he said. But this doesn’t mean forgoing medication on the assumption that withholding it might actually be less stressful than giving it.

"Medications can and should be used in the same way as they are used on anyone else, to improve comfort and alleviate distress," Dr. Horrigan said. "But we must be thoughtful about the drug selection and dose. It requires a more sophisticated approach."

Generally, the rule should be to start with a lower test dose than usual, observe its effect and any reactions, and then increase the dose. Again, the parent is the provider’s best guide. "It’s critical to get as much medical history as possible about any past adverse reaction," he said.

For very agitated children, an atypical antipsychotic may be helpful. Risperidone and aripiprazole are the only two approved for use in children with autism spectrum disorders. Both are available in oral dissolvable tablets.

Oral ketamine – alone or in conjunction with midazolam – is a possibility for the combative child, Dr. Chun noted. "It’s not evidence based, but some say that it should be a first-line drug," for these cases.

A Matter of Time

Autism is on the rise in the United States, according to a new report from the Centers for Disease Control and Prevention (MMWR 2012;61[SS-3]:1-19). The report estimated a 78% increase in cases from 2002-2008. The report suggests that one in every 88 children has some form of autism spectrum disorder.

"Emergency physicians are going to be seeing more and more children with autism. That is a fact. This is not a rare disorder we’re talking about. It’s out there, the prevalence is growing, and you’re going to see it" in the emergency department, Dr. Horrigan said.

None of the physicians interviewed for this article reported any relevant financial conflicts.