on pursuing autism diagnosis


Who do I see first to get my diagnosis? My general med doctor will not agree to start testing, but will send me to any specialized doctor I ask about. Psychiatrist? Psychologist? Therapist?

realsocialskills said:

If you have the…

neurodiversitysci said:


Also, not everyone experienced in diagnosing learning disabilities and ADHD has training in diagnosing autism. The neuropsychologist who diagnosed me was a great example. They still believed circa 2009/2010 that Asperger’s and autism were different conditions, and weren’t aware that researchers had given up that idea.

I’ve also heard that it’s rare for clinicians to be trained in administering the test considered “gold standard” for diagnosis, the ADOS. (By “gold standard,” BTW, I’m referring to specificity, reliability, validity, etc., not respect or acceptance of disability. This is still medical model stuff). One can more easily find such people in large university or community hospitals, where demand is high and resources for training are plentiful. So, if you’re concerned about getting the highest-quality professional diagnosis possible, you may want to try to find someone with ADOS training.

On a side note: if the aspects of autism you’re most concerned about are sensory processing or motor coordination disabilities, you may also have to look farther afield than a neuropsychologist, perhaps even to an occupational therapist. As I learned through bitter experience, the basic neuropsych testing battery was developed to evaluate people with brain damage. In these sorts of situations, any sensory and motor difficulties will be relatively easy to see during testing, even with very blunt and indirect measures. Thus, the sensory and motor measures used are indirect (e.g., being able to remember what you hear during a working memory test, copy and recopy a picture after a delay, quickly scan through a map and cross items off of it). A few are direct, but IMO, aren’t very sensitive to more subtle difficulties (e.g., the Grooved Pegboard task). 

There are multiple neuropsych batteries that share a core of basic functions they test, but differ in which other abilities they assess. For example, my own testing was heavily weighted towards executive function tests but, oddly, did not include a measure of time sense, despite my real-life difficulties in this area and the existence of a neuropsychological time sense test. If there’s anything specific you’d especially like assessed, you may want to discuss that with the clinician before the evaluation so you’re not unpleasantly surprised.

Good luck! I hope you get a competent diagnosis and that it helps you.

realsocialskills said:

I don’t know enough about the ADOS to know the extent to which it is a valid test (it seems to be primarily focused on social interaction, so I have my doubts), but very much agree with the rest of this.

The one thing I do know about the ADOS is that the adult version and the children’s version are different and that experience with one doesn’t always imply experience with the other.