Perkins School for the Blind Transition Center

A Parent’s Perspective on Autism Spectrum Disorders

How do I help my child? I remember the first time I sat in the psychiatrist’s office to discuss my son, Andrew, then 7 years old and in the second grade. We had been referred to Dr. J as a specialist in Attention Deficit Disorder, the popular diagnosis of the time. Dr. J diagnosed Andrew with ADHD, and treatment began with stimulant medication.

Andrew improved with meds and Dr. J’s parenting coaching, yet I still felt there was “something else” going on that we had not identified. We then took Andrew to a neuropsychologist who provided three full days of testing. She was the first to introduce us to Asperger’s Syndrome. As I read the few pages on Asperger’s, I felt we finally had a more complete picture of our son.

Andrew is now 21 years old, and we still struggle with his Asperger’s characteristics. Looking back, I can offer the following insights for parents on understanding and treating their child’s AS disorder:

It’s Not Just the Child but the Parents Who Can Benefit from Treatment. My husband and I attended a parent group, met with our psychiatrist, and went to seminars (Tony Attwood, PhD and Ami Klin, MD were especially informative) to learn how to effectively interact with our AS son. We also met regularly with a therapist to discuss ongoing challenges and develop strategies for evolving situations. We needed a team of professionals to get us through!

Write Up Your Child’s Family History. You will be asked for this time and again; it’s easier to have it ready than to recreate it for everyone who asks. Details surrounding your pregnancy and birth experience, developmental milestones, and especially communication behaviors will be asked.

Practice Describing Your Child in Plain English. You will be asked “what’s your child like?” Professionals will want to know how he gets along with friends, performs at school, behaves at home, what he likes to do, what doesn’t seem right to you, and what he is especially good at and not so good at.

You Are Your Child’s Best Advocate. Don’t leave your child’s best interests up to the teacher, the school psychologist, administrators, or even the doctor. You know your child best; a good doctor will listen to your insights and observations. Teachers and administrators have many students under their umbrella, so it’s up to you to keep your child on their screen.

Treatment Should Include the Home Environment, Not Just School. Your child’s ability to function at home is important to the family’s emotional health as well as his own. The meds shouldn’t stop working once school is out, and how siblings, caregivers, and all family members interact with your child matters greatly. Family members will need to be educated on how an AS disorder affects your child.

Learn All About How Special Education Services Are Provided in Your District. Then navigate the system with positive diligence. We got support by asking for help, while we saw others get nowhere making demands. I also found that showing gratitude (and bearing baked goods) went a long way to building positive relationships with school personnel.

Make It as Easy as Possible for Your Child’s Teachers to Effectively Interact with Your Child. If you see a paragraph in an article that is particularly relevant to your child, copy the article and highlight the paragraph. If a teacher isn’t interested in informally implementing suggestions, bring your information to the special education meetings and get important data included in your child’s IEP (Individualized Education Plan) or whatever that document is called in your district.

Expect to Continue Learning and Keep an Open Mind. A friend presented me with an article about food allergies and autism. I didn’t have any faith in managing Andrew’s problems with diet, but reading the article, had to agree that it sounded like it was describing Andrew. We weaned him off dairy products, and after he was a bear for a few days, he appeared to feel much better. Andrew couldn’t notice feeling any differently on his meds but reported feeling “happier” without the dairy products. Any win is a big help!

Face the Fact That You’re in It for The Long Run. I remember feeling dismayed when Andrew’s medications had to be reevaluated a few short months after he began taking them. I came to realize that managing medications is an ongoing activity, as is dealing with an AS disorder in general. It becomes part of your life and as you embrace the challenge, solutions will come to you.

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