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Partnering with Your Child’s Pediatrician

by Paul Carbone, MD, and Alan Rosenblatt, MD
Autism Asperger’s Digest | September/October 2013

A partnership built on mutual trust between you and your child’s
pediatrician can have great benefits for you, your child, and your family.

Going to a doctor can be stressful for children with autism spectrum disorder (ASD). The idea of someone touching your face or skin, and even poking and prodding your body, can cause enormous anxiety for a child who may already be extremely sensitive to stimuli. A doctor’s visit is also a change in routine. It might mean taking your child out of school early, interrupting a therapy session, or changing his meal schedule. The waiting room can be stressful, too, especially if there are several other children, and the wait can be long.

As a pediatrician and a father of a child with autism, Dr. Carbone is often asked by parents how they can get the help they need from their child’s doctor. Dr. Carbone and Dr. Rosenblatt see the relationship between parents and their child’s pediatrician as a partnership in which shared goals are developed and decisions about treatment are made together. In this article we’ll provide some tips on how to establish a good working relationship with your child’s pediatrician and not only survive a doctor visit but how it can actually be fun for your child. A partnership built on mutual trust between you and your child’s pediatrician can have great benefits for you, your child, and your family.

Preparation Is Key!

Talk to your child about what he can expect at a doctor visit. Look for books and videos that can show your child in a positive way what takes place. Many pediatric practices have websites with photos of the pediatricians and staff and even tours of the practice so that your child will know who she will be meeting and what the environment looks like. To teach your child, try presenting appropriate behaviors in the form of a story with pictures about how to behave in or react to a situation.

To make some of the procedures less frightening, practice some at home first. Take your child’s temperature or blood pressure. Look inside her mouth with a tongue depressor. Listen to her heart with a stethoscope. Purchasing a toy doctor’s kit beforehand can help her become familiar with the doctor’s instruments, too. You might want to rehearse your visit in advance as well.

Parent as Partner

To be a good parent partner, it’s important to be an active player. Bringing a list of questions and concerns to discuss can help focus the appointment on what is important to you. Be prepared to update your doctor about changes in your child’s health and circumstances, such as changes in medications and treatments.

Of course, it’s important that you let your pediatrician and the staff know how to help make visits manageable for your child. If your child needs time for the doctor to make him comfortable, or if you have a concern that might take a while to sort through, ask if you can book a longer appointment. Tell the office staff what bothers your child, but also share what comforts and interests her. For example, Dr. Carbone has several families who have him give their child an after-visit treat they have brought along as a reward for good behavior during their time together.

You can also inform your pediatrician if you prefer to separate procedure visits from routine examinations. If your child might need a vaccine or an uncomfortable procedure, talk to your pediatrician about how to best share that information in a way that your child can understand. Likewise, it’s okay to ask your pediatrician to explain what he will do during the exam if that will decrease your child’s anxiety. For example, Dr. Carbone will generally tell a child that he is going to listen to her heart for 10 seconds, count during that portion of the exam, and then celebrate with tickles when reaching 10. This breaks the exam into less stressful portions and provides predictability for the child.

Consider your pediatrician a key source of information, but always do your research and gather information from other sources, too. Don’t be shy about telling your pediatrician of plans to ask other healthcare professionals for advice and second opinions. In fact, most pediatricians welcome a second opinion and may even give you a referral to another expert. And whenever possible, give your doctor feedback on how he is doing. Send a thank-you note for a suggestion he makes that worked out well. Let him know when something doesn’t go well, too.

Waiting…and Waiting

If your child has a hard time waiting, you might decide to book an appointment early in the day as these tend to have shorter wait times. If sitting in the waiting room is too stressful, ask if you can wait in the car, or somewhere more comfortable for your child and be called on your cell phone when the doctor is ready. Many practices now are making these and other accommodations.

When Real Life Hits

Sometimes, even with all your best efforts, a doctor’s appointment can be challenging, especially if your child didn’t get enough sleep the night before, or she is fearful about an impending immunization. In this case, you simply have to do the best you can to keep the appointment moving, so you can reduce your child’s time at the doctor’s office. Enlist help from your spouse or a friend to accompany you. Bring a favorite toy or object that your child finds soothing. Do what you can to calm your child during the actual visit. You may choose to finish the appointment with a special reward, which will help your child associate doctor visits with something positive and enjoyable.

While doctor visits can lead to some challenging moments, your child deserves the same access to quality health care as other children. By partnering with your pediatrician and the staff, you can get your needs met and reduce your child’s stress during visits.

The Successful Doctor Visit (sidebar by Dr. Alan Rosenblatt)

The good visit starts with an upbeat and welcoming staff who are sensitive to the child’s special needs followed by the doctor who takes time to bond with parent and child in a nonthreatening manner. The doctor should be flexible about accommodating the child’s ability to tolerate an exam, which may take place on the parent’s lap, the exam table, or standing up.

The exam starts as noninvasively as possible and saves the most threatening aspects of the exam until the end. I like to start by checking the hands and feet and then moving to the trunk and head. Whenever possible, I try to be playful, making a game out of the necessary components of the exam. I allow the child to handle whatever instruments I use and practice the examination that I am about to perform. Humor helps with some children but may irritate others.

In certain circumstances no amount of charm or sensitivity will be able to calm a child’s raging fear. In those situations I try to express my empathy and complete the exam as efficiently as possible. I try to make up for my invasion of the child’s body and personal space by declaring an end to the hard part of the visit and allow the child to be comforted by her parent. I will provide tissues to wipe away tears and drippy noses, and may try consoling the child by rubbing her back. Once the child is dressed and calmer, I may offer a special toy or activity for the child to do in order to show that I want to be friends again.

After finishing my discussion with the parent, I check to see how the child says good-bye. From the child who responds to me, I will try to elicit a high five. If he is forgiving in his response, I will even try to get a hug. If he ignores or avoids my overture, I will praise his bravery and say how proud I am of his attempt to tolerate all of the scary things that we did. If the child is unable to understand what I am saying, I reassure the parent that we will try to minimize her child’s discomfort with necessary exams and procedures. If the child looks at me, I may blow a kiss!

Material in this article is adapted from Rosenblatt, A. I., and P. S. Carbone, eds. 2012. Autism Spectrum Disorders: What Every Parent Needs to Know. Elk Grove Village, IL: American Academy of Pediatrics.

Paul S. Carbone, MD, FAAP, is an associate professor of pediatrics at the University of Utah. He is a current member of the Council on Children with Disabilities Autism Subcommittee of the American Academy of Pediatrics.

Alan I. Rosenblatt, MD, FAAP, is a neurodevelopmental pediatrician and teaches general pediatrics at the Ann & Robert H. Lurie Children’s Hospital of Chicago. He served on the Autism Expert Panel of the American Academy of Pediatrics.

Copyright © Autism Asperger’s Digest. 2013. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.

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