Testing for autism?
After filling out a basic questionnaire for my child’s psychiatrist, we think our 15 year old is on the autism spectrum. We went to our pediatrician to get a referral and they basically said that our child, if they had autism, would be on the upper end of the spectrum so there’s not much point in testing as there’s not much that can be practically done. Is this true, am I just attaching a label to my child with no practical benefit? My child doesn’t seem to care either. We do have an ADHD dx but the accommodations offered by the school aren’t helpful or applicable. Local resources are welcome, especially if they take insurance. Thank you.
Feb 28, 2022
Parent Replies
That’s an utterly ridiculous and dismissive response from your psychiatrist (I would get a new one). Psychiatrists are in no way qualified to Dx autism or ADHD. Their understanding is limited to the DSM which is wholly inaccurate. I recommend joining Facebook groups of actually autistic families (not autism parents, who are generally ableist) to learn some of the ways we are different and the things that help us. I fought for my daughters accommodations for 10 years before they were anywhere near accurate. I was diagnosed at 36 and have lived a life of agony because I didn’t know. Go to your regional center. That would be RCEB if you’re in Berkeley. Familiarize yourself with the DSM-5 diagnosis because even though it’s wrong, that’s what they use. Make a list of ways that your child fits into the criteria. They’ll do an intake, then a psych evaluation, then hopefully you’ll get in and be eligible for services - which can be extensive depending on how much you ask for. I’m looking forward to when they help my teen live independently and I can start caring for myself again. Happy to answer questions.
When we did a reassessment this past summer for my 13 year old, he was given the additional high functioning ASD diagnosis. Your pediatrician is sort of right in that there are no specific additional services or medication directly linked with HFASD, BUT it was extremely helpful for us to better understand my son's nuero-differences. He, too, was diagnosed with ADHD at a younger age and has accomodations and medication. We also started Social Thinking group therapy, even before we got the HFASD dx, because of the pragmatic social challenges he was already having. The neuropsychologist that did his evaluation was able to give us a list of resources and additional recommendations, but they pretty much lined up with things that were needed for his ADHD. What was added on the report, was the recommendation to get him a learning coach for overall executive function delays and struggle in school with overall organizing, keeping to deadlines and planning strategies. That was a bit harder to find, but I found SOS4Students on this forum and (although not cheap) he's had a lot of great success and improvement with his sessions and workshops.
What I also have learned through joining groups like AANE (which has a great Intro to ASD Diagnosis workshop for parents), is that understanding your brain and then being able to advocate or disclose when necessary is part of living as an autistic person. There is also something to finding a community and finding support through those communities. Just my experience.
My teen was diagnosed with ASD at 18 and it has been extremely helpful! We were also on the fence about whether it mattered to get the diagnosis but my son really wanted to know. It turns out that having the diagnosis has been very helpful in college with accommodations, housing, and even financial support from the Department of Rehabilitation. All the reading I've done about ASD has helped me understand my son much better and I think, helped him understand himself as well as informed his therapy. I have no regrets whatsoever and would highly recommend getting the diagnosis. We ended up paying to have a private neuropsych exam (not cheap) but if you are not in a hurry you should be able to get it through your insurance at UCSF or through your school district.
Absolutely you can/should get your son tested. And find a new pediatrician. You can contact your insurance first, or also the regional center (RCEB for Alameda/Contra Costa county) if you have difficulty with your insurance covering. There generally is a long wait where you go to get testing, but good for you for advocating for your son. At least with ASD testing you can r/o possibilities if he isn't or services if he is found to be on the spectrum.