After Autism Diagnosis

( or did they tell you that you are not, after all, autistic?)

So many adults finally find a professional who is willing to do an assessment and go eagerly to find out if they are indeed autistic. Many wonder if they will be told they are autistic, that they are not, or that they are “something else” instead.

My first attempt at diagnosis I was labeled with 5 other serious diagnoses to explain my test results , and was mocked, ridiculed, and scolded… I had a family, married with children, had worked jobs. Autistic people did none of those things! It was obvious immediately that this doctor ( a neuro psychologist) had not updated his knowledge of autism since his original college classes back in the early 1980s. Although his staff had told me he had plenty of experience with diagnosing autism in adults and with adult women, he told me at the evaluation summary “autism just doesn’t come into it” and that he had never diagnosed a single adult with autism in his career. This spanned about 40 years of doing neuropsychiatric evaluations, up to 350 per year and he told me he had a couple thousand patients under his supervision. Statistically 2 to 3 percent of those individuals were likely autistic but he never saw one!

I can’t stress how important it is to find somebody who has actually had a lot of experience with diagnosing and working with autistic adults. If I had insisted on talking to the doctor and asking how many autistic individuals he had diagnosed over the years, this whole failed attempt at diagnosis would not have happened.

The experience of “missed” or “mis” diagnosis is quite common among adults seeking to learn more about their own neurology and to find out if they are autistic (here in the USA, and likely many other places too, from reports I have read)

What has been interesting about this failed attempt was that the test results and written evaluation summary from this experience has been very useful for self understanding.
I took the test results with me to the second attempt at diagnosis with a very experienced autism specialist. He showed me in the test results how it showed very clearly that the doctor who did the testing simply was not familiar enough with today’s understanding of autism to recognize it and instead had given me labels he was familiar with.

The summary showed that I was highly gifted in a few areas, adequate in a few and abysmally poor in performance in other sections of the testing. In other words my performance had peaks and valleys, showing clearly my uneven neurological development. Charts of average/neurotypical people generally are similar in levels of performance throughout the test sections, sort of little hills instead of the very sharp contrast of performances in different part.

So I got my diagnosis from somebody who actually understood my autism, but that first neuropsychological test report revealed many strengths and weaknesses of my autism and my neurology.

I have been able to use the results for better self understanding and for making self accommodations. Although it was very upsetting at the time, it has turned out to have been useful in several ways and I have referred to it repeatedly in the 5 years since.

Since this (misdiagnosis or missed diagnosis ) happens often among those adults seeking testing, I wanted to bring it up.

Don’t worry if the person doing the diagnosis says you are not autistic, there may still be very many ways the evaluation and summary can be useful going forward.

If their explanations answer your questions, maybe you really are “something else”.

If you are certain you are autistic and your assessor does not have understanding of today’s definition of autism, you can still use the test results to help yourself make adjustments to your life. You can continue to seek a competent and up to date evaluation from an autism specialist.

Finding a competent assessor for adults is a struggle today. That is why so many groups online and in person accept self identification of ASD.

More about diagnosis aftermath soon!