Autism treatment requires a collaborative patient-doctor relationship

My family’s world changed instantly upon receiving Annie’s diagnosis of apraxia and autism spectrum disorder (ASD) a day before her second birthday. Hearing three words, “she has autism,” we suddenly faced a lifetime of uncertainty. I knew that I had to embrace my role as a mother of a child with autism, and as an autism champion — and more critically, find a physician that I could form a trusted relationship with for both Annie’s physical needs and our emotional needs.

I’m thankful for finding Annie’s pediatrician — Dr. Susan Levy, developmental pediatrician at Children’s Hospital of Philadelphia and a member of the autism expert panel for the American Academy of Pediatrics of Philadelphia. We have worked collaboratively for the past 10 years to provide care and set developmental goals that literally helped Annie find her voice through speech generation technology and grow into the extraordinary child she is today.

Dr. Levy was by our side and our partner in treatment every step of the way — from finding the right types of therapy and schooling for Annie when she was a toddler and then school age, to potty training (which took her until 10 years of age) and now entering puberty at 12-years-old.

According to the CDC, 1 in 68 children have an autism spectrum disorder. Every family deserves to find their “Dr. Levy.” Every family should feel comfortable sharing information and working together with a doctor on a treatment plan that gives their child the opportunity reach their greatest potential.

To foster collaboration of caregivers and clinicians, below are five tips that every family should consider to help build a successful pediatrician relationship and put the pieces of the puzzle together in harmony for their child.

1. Trust is paramount.  Through your pediatrician or friend, identify a clinician whom you trust. Do your research, read reviews and most importantly find someone whom your gut instinct tells you is a good fit, both for your child and for your family.

2. Don’t be afraid.  Time with your child’s doctor is valuable. You should feel comfortable expressing your concerns, fears and apprehensions. Don’t be afraid to ask any questions. To avoid forgetting, take 30 minutes to write down your questions and concerns before entering the clinician’s office.

3. Share, share, share. An important part of the doctor, patient relationship is the ability to share as much information as possible. Be open and honest when sharing information. If you can’t remember all the details, share as much as you can with your clinician to give them a sense of the story or incident.

4. Remember, it’s your child. Keep an open mind when sharing information and listening to your doctor’s professional opinion. It’s natural to feel defensive or offended and disagree, especially when discussing non-traditional or complementary and alternative medical treatments. Don’t forget that you’re an expert on your child and clinicians are experts in their field, but ultimately you’re both on your child’s team. A healthy conversation balance will bring invaluable knowledge that will benefit your child without putting their health or well-being at risk.

5. Keep records and do your homework. Some clinician’s will ask you to keep track of your child’s behaviors, eating habits or responses to new medications or therapy. These observations help them better assess your child and make a treatment recommendation.  Write activities on a calendar and bring the information into your next appointment.  Your doctor will appreciate your attention to detail, and your child will reap the benefits.

Amy Kelly is co-chair, family advisory committee, Children’s Hospital of Philadelphia Autism Treatment Network.

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