How to Get High Quality Medical Care for Your Autistic Child

Communication is Key for Successful Medical Care

Child at Doctor's Office
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Everyone has medical challenges at one point or another in their lives. People with autism are no exception. In fact, for a variety of reasons, people with autism often have more medical challenges than other people. Some of the issues that come up for kids and adults on the spectrum include:

  • Gastrointestinal problems (which are more common for people with autism)
  • Injuries (people with autism often lack age-appropriate coordination and may also self-injure)

Unfortunately, it can be a major challenge for people on the autism spectrum to get the medical treatment they need—even when they are verbal and engaged. It's even harder for someone who is non-verbal, or whose behaviors appear to be out of control or violent.

Fortunately, there are some specific steps parents and caregivers can take to ensure that medical care for autistic loved ones doesn't require a battle!

Why Is It Often Difficult for Autistic People to Get Quality Medical Care?

For people with autism, a number of issues can stand in the way of medical care, especially in an emergency. Eve Megargel is an artist, writer, and mother of a nonverbal son with autism, as well as the author of the book Learning to Kiss. Says Megargel, "We know there are communication issues, sensory issues, anxiety issues—basic points that need to be conveyed and responded to in order to get quality care like anyone else." In other words, even verbal adults on the spectrum may:

  • Find it difficult or impossible to express themselves effectively in order to describe their medical needs
  • Find it difficult or impossible to comprehend and follow spoken instruction
  • Feel physically overwhelmed by the lights, smells, sounds, and bustle of a hospital or emergency room
  • Have a different response to pain than a typical peer (many people with autism have extremely high pain thresholds)

Non-verbal and/or extremely anxious people on the autism spectrum may also exhibit behaviors that can look downright scary to typical medical personnel with no knowledge of autism. For example, they may:

  • Bolt (run away)
  • Self-injure (bite themselves, hit their own heads, etc)
  • Become aggressive toward others
  • Vocalize loudly, scream, or moan
  • Refuse care

Because autistic behaviors can be so challenging in a stressful situation, some medical professionals assume they are seeing a person in a mental health crisis rather than an autistic person under stress. As a result, they may ignore a medical issue while focusing on a non-existent mental health problem. Says Megargel: "If someone comes in with autism and they are having behavior issues, they assume that it’s a psycho-pharma issue rather than wondering if they should look for GI issues."

What Do Autistic People Need in a Medical Setting?

Medical emergencies and hospitals can be overwhelming to anyone. For many people with autism, however, they can be horrific. In order to be calm, receptive, communicative, and cooperative, autistic people will often need:

  • A hospital representative who is familiar with autism
  • A setting free from intense lights, glare, and loud noise
  • The tools to communicate effectively (keyboard, picture board, etc.)
  • Information about what to expect (often in visual form)
  • Support from a person who knows and understands them (even when it is customary for the patient to be alone with a doctor)
  • Familiar self-calming routines or items (possibly including the freedom to move, vocalize, or use a calming toy, video, or other objects)

How Parents Can Help Prepare Their Child for a Medical Event

If your child is going to be undergoing a pre-planned medical experience—a procedure, exam, or surgery—you have the opportunity to teach your child what to expect, how to behave, and how to communicate with hospital staff.

In fact, it may be helpful to spend time preparing your child even if you're just headed to the pediatrician for a well-child checkup.

Here are a few techniques that Eve Megargel recommends:

  • Teach your child to understand countdowns or visual numbers (passage of time). This will help your child to comply with requests to "hold your breath for ten seconds," or "wait for five minutes," and will also help when anticipating an event such as a vaccination.
  • Teach your child to understand when closure will occur (this long; this many times). This will help your child to remain calm with the understanding that a procedure will be over at a particular, predictable time.
  • Teach your child to breathe deeply, meditate, etc. in order to relax.
  • Teach your child to understand social stories (visual stories that describe expected events, behaviors, options, and available resources). If possible, create a social story for the medical event your child will experience. You can do this by photographing locations, instruments, and people who will be involved, and explaining in simple terms what they will do and what your child should do to help. For example, "Dr. Smith will use the stethoscope to listen to your heart. He will put the flat part on your chest. It will be cold, but it will not hurt. You will sit still while Dr. Smith listens."
  • Prepare tools to bring along. If your child needs a picture board or augmented communication device, check to be sure that she has access to the words and pictures she will need. Bring along any helpful calming toys, blankets, or videos.
  • Visit ahead of time; take photos; etc. You will need the approval and cooperation of your child's medical team, so do call ahead.
  • Practice in order to be prepared. Actually rehearsing tricky interactions and procedures can make all the difference for a person with autism.
  • Consider providing your non-verbal child with a voice output smartphone or pad that allows him to tap a picture or write on a keyboard and have a synthesized voice read out the message. This can facilitate communication with medical staff.

How Parents Can Help Prepare Medical Staff to Work With Their Autistic Child

It's a great idea to communicate with medical staff at your local clinic or hospital before your child needs care. That way, when your child does arrive, everyone will have a good idea of what to expect, how to communicate, and how to help your child to have the best possible medical experience. Megargel suggests that parents:

  • Talk with the receptionist. Not only can she tell you exactly what to expect in the waiting room, but she can also help you communicate your child's needs to other staff.
  • Talk with your child's doctor. Explain your child's particular needs and abilities, and ask her for the name of a point person who will be able to coordinate your child's care.
  • Talk with the head nurse. Whether in an office, clinic, or hospital, the head nurse or nurse practitioner will probably be very involved with your child's care. The more she knows, the better prepared she'll be to do a terrific job.
  • Provide information about your child. Are there "best" ways to approach him? Communicate with him? Help him to remain calm?
  • Advocate for a quiet, relatively dim space—even knowing that such a space may be hard to come by in a medical setting.
  • Advocate for your child by explaining how your child communicates and insisting that you be present with him. Be clear that in no case should he be deprived of an augmented communication device—even in the operating room.
  • Provide clear, concise information about your child's history, particular medical concerns, medications, and possible complications.
  • Explain that expression of pain in autism is unusual; an odd or aggressive behavior may be an expression of pain rather than a violent outburst.
  • Be prepared to advocate and/or handle a behavioral situation. Be mentally prepared to step in if security or other people start to get involved.

How to Choose an Autism-Friendly Doctor

Most parents choose a doctor on the basis of recommendations, insurance, and physical proximity. While the same system may work for an autistic child, chances are you'll need a little more information before choosing a pediatrician or family doctor. Eve Megargel recommends watching closely to see if the doctor you're visiting (even if your "child" is now over 18):

  • Is willing to pause and take the time to ask questions and connect with you and your child
  • Is prepared to use visual tools as well as words to communicate with your child
  • Greets your child and asks about the best way to communicate effectively
  • Exhibits patience if your child seems anxious or has challenging behaviors
  • Thinks of you, the parent, as part of the team

A Word From Verywell

Your autistic child needs and deserves quality medical care—even if it takes extra work on everyone's part to be sure he gets it. By preparing both your child and his medical team ahead of time, and choosing medical practitioners wisely, you can set your child up for success. Just as importantly, you can help to ensure a more successful medical outcome.

Sources:

Interview with Eve Megargel. February 2017.

Megargel, E., et al. Autism and hospitals: a difficult match. Academic Pediatrics, Volume 12, Issue 6, Pages 469–470, November/December 2012.

Soraya, Lynne. Barriers to effective medical care for autistic adults. Psychology Today. Web. June 2014.

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