Reply To: Getting unstuck

#54073
Penny Williams
Keymaster

It was really hard for us to get the autism diagnosis. Really. hard.

First, we went to TEACCH, which is an autism non-profit based at UNC, I believe. They had an office here and that’s where we were referred. They used the ADOS to test him and I watched a good bit of it through a 2-way mirror. I watched my son parrot things I’ve said to him, reminded him… and saw him have a great conversation with an adult, as he always does. After the ADOS, we were told that “ADHD is a more fitting diagnosis” and that we should basically stick with that. I was CRUSHED. I knew he had “performed” in a way we had been teaching him for the evaluation. He was 10 at the time.

The therapist still suspected autism/Asperger’s could be at play and supported my efforts to keep working toward that diagnosis. A couple psychs came and went in her office, too quickly to get evaluated. One in particular, we went ahead and met with even though our appointment was on her last week of employment there. She said by looking over his chart and talking with us that she could see how it’s possible, but couldn’t do a full evaluation since she was leaving. She also told me that extreme sensitivity to medications, vitamins, and supplements is common for those with high-functioning autism. That was something we had struggled with and couldn’t find an explanation for for years (I think you’ve struggled with that too). Her insights, while not really official, kept me pursuing a diagnosis.

Finally, our therapist called a friend and mentor on our behalf. The psychologist she called was well regarded as an autism expert in our area and very knowledgeable about high-functioning autism. The hiccup was that she was now a director at a day school and not in private practice. She did still see some patients from time to time outside that job, and agreed to meet with us nights and weekends to do a full and very thorough evaluation. At the end of our first meeting, mostly interacting with my son, she expressed doubt that she would conclude autism was a valid diagnosis for him. I could tell, though, that she would do a very thorough and open-minded evaluation, so I resolved that she would be the last on the journey to an autism diagnosis, whether she diagnosed it or not. I felt confident that if autism was part of my son’s story, she would see it.

And she did. She did about a dozen questionnaires and rating scales for various things, including 2 or 3 for autism. She met with me several times and with my son a few times. She went through his lengthy file from all other evaluations and from the therapist. She spoke to the therapist about him. It took her about 2 months to pull all of that together and come to a conclusion, but she did very clearly see autism in the end. In fact, her diagnostic report said that he’s a clinical example of “autism hiding in plain sight.”

I see a lot of similarities between our boys too, in what you share here. If you feel strongly about it, keep pursuing it. For us, it didn’t really change treatment, but it helped so much with our understanding of him, and how to better approach some behaviors.

Penny
ADDitude Community Moderator, Author & Mentor on Parenting ADHD, Mom to teen w/ ADHD, LDs, and autism