Autism and doctor visits: Family seeks help to ease daughter’s fears
This week’s “Got Questions?” response is by psychologist Kenneth Shamlian, director of the behavioral treatment program at the University of Rochester Medical Center, and Angeles Nunez, a certified child life specialist at the center. The University of Rochester is among the 14 sites in the Autism Speaks Autism Treatment Network (ATN).
Our daughter is severely affected by autism. We’re having a particular problem with doctor visits. She doesn’t like being touched and won’t sit still for procedures like a shot or drawing blood. Do you have some advice for preparing her for the visit? How about while we’re at the doctor?
Editor’s note: The following information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.
This is a common issue for many children and even some adults, on or off the spectrum. However, autism-related social and sensory issues can greatly add to the challenge. It’s also an excellent issue for you to address with the help of your daughter’s behavioral therapist.
We’re glad to offer you some suggestions and strategies for you and her therapist and doctors to consider. In addition, we want to direct you to a number of helpful resources that Autism Speaks and its Autism Treatment Network (ATN) have developed. These include several tool kits that the ATN has written in its role as the federally funded Autism Intervention Research Network for Physical Health (AIR-P). These include:
Strategies for a smoother visit
Outside of autism specialty centers, some doctors aren’t familiar with the special needs of children who have autism. It can help to inform the healthcare provider, in advance, of your child’s diagnosis along with information on how your child prefers to communicate, her sensitivities (e.g. to touch, fear of shots) and any autism-related behaviors that might take place during the visit (e.g. her reaction to being touched or stressed, stimming, etc.).
In addition, consider the following:
Minimize wait time by asking for the first appointment of the morning or the afternoon (immediately following the office lunch break). Another way to reduce potentially stressful waiting time is to call ahead to ask if the doctor is on schedule. You might do this before you leave home and/or use your cell phone to call before you get out of the car in the parking lot. If appointments are running behind, ask the staff if they can call you shortly before the provider is ready to see your child.
Bring a bag of favorite things for play and distraction during the visit.
Ask for accommodation. If your child is more comfortable with your touch than that of a nurse or doctor, ask if they can tell you how to help with procedures. Also, some children on the spectrum prefer to stand rather than sit during an exam. If that’s true of your child, ask whether the nurse or doctor can do some procedures while she’s standing. If she needs a shot, request a numbing cream to make it less painful.
Ask in advance about the services of a child life specialist. Child life specialists help children through the stresses of medical procedures (as well as hospital stays). If your child’s doctor is affiliated with a hospital or other large medical facility, he or she may be able to request a child life specialist’s support during your daughter’s office visit.
Preparing your child for the visit
Learn the layout. Call ahead or – even better – drop in on your own for a pre-appointment visit to get a feeling for the layout of the building and rooms, the procedures and other interactions that will include your child. A little familiarity can help you develop a plan to direct your child from beginning to end with a minimum of unpleasant surprises.
Consider a practice visit with your daughter. Ask whether you and your child can both visit in advance – perhaps spend a little time in the waiting room and briefly step into an exam room. The idea here is to make the visit enjoyable – perhaps with a special treat or favorite activity during or directly after the office visit.
If your daughter is particularly resistant or fearful, take it one small step at a time. For instance, if she resists so much as entering the building, you might start by explaining that the two of you will simply sit in the car in the parking lot for a brief time before leaving. Reward and praise each small success. Then gradually build on it. For instance, the next visit you might propose that the two of you step into the building. On subsequent visits, you might stay inside for a longer period and/or move down the hallway toward the doctor’s office.
Role-play with medical tools. The aim here is to help your child become more comfortable with the procedures and medical equipment used in an exam or other procedure. For instance, if your daughter has resisted being examined with a stethoscope, you might use a toy stethoscope in a game of pretend at home. Again, gradual step-by-step exposure tends to be best. Start by showing it to her, then inviting her to touch it. You might show her how it’s used on yourself, a doll or a stuffed animal. Then invite her to use it to examine you or the doll or stuffed animal. Wait until she’s receptive, before asking to use it on her.
Have fun with social stories. Many children on the autism spectrum benefit from having information presented visually. Through pictures and simple language, visual stories can make potentially difficult situations more predictable and provide children with coping strategies.
Many libraries have illustrated children’s stories about going to the doctor. Or you can make a personalized social story using photos and/or drawings.
Find personalized story templates, developed by Autism Speaks and the University of Washington READI Lab.
Practice relaxation techniques. Depending on your child’s abilities, consider teaching her some relaxation techniques that you can prompt her to use in stressful situations. We recommend:
Deep breathing. In a calm, private place, practice slowly inhaling, holding the breath briefly and then exhaling fully. To help teach deep breathing, try inviting your child to blow bubbles or a party horn that has the noise-piece removed.
Visualization/guided imagery. If she’s receptive, try encouraging your daughter to close her eyes and imagine a favorite safe place. Invite her to imagine the sights, sounds and smells. Again, the idea is to teach the technique in a quiet private place. Then practice it elsewhere.
We hope this sampling of strategies will prove helpful – ideally in consultation with your daughter’s behavioral therapist. We wish you all the best.
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