Seeking an Adult Autism Diagnosis? Here’s What to Expect
Because I really wish I had read an article like this a year ago.
Most autism diagnoses happen at a young age. According to this meta-analysis, the average age of diagnosis is about five years old. While early diagnosis is often a good thing, as it allows autistic children to receive any necessary accommodations from a young age, it leads to a lot of uncertainty for teenagers and adults seeking a diagnosis. Though I can only speak from my experience being diagnosed at age 18, I hope to demystify the process in this article.
Full disclosure: this article is written for autistic or autistic-questioning people seeking a diagnosis. It will not be my most entertaining article, but I wish I had been able to read something like this when I was seeking a diagnosis. I hope to write more helpful “what to expect” articles like this.
I sought diagnosis in early November of 2020, after a few months of research and questioning. I had noticed that my communication patterns, social abilities, or lack thereof, and thought patterns were very similar to the experiences of autistic people online. I later realized that some of my physical ‘habits’ were actually stims, which was the final push I needed to look for a diagnosis.
My psychologist, who I had been seeing for years, did not offer autism evaluations but referred me to someone who did. I emailed and set up my appointments. The initial appointment, which I did online, was similar to a regular therapy session for me. I began by explaining why I thought I was autistic. I had prepared a list in advance to help me remember everything I wanted to talk about, and I highly recommend this tactic. After I finished, my psychologist asked me a series of more pointed questions about my life, which included questions about my history of mental illness, friendships, relationships, internal state, and physical behaviors. This session lasted about an hour.
Following this session, I was sent two parent questionnaires. It was not mandatory, but my psychologist recommended one of my parents fill them out to provide an outside look at my mental state. One questionnaire was more generally about behavior and one was more specifically about autism. At my second session, which I did in person, I did a series of assessments. One was a brief intelligence test, a second was the Autism Quotient (which can be found online), and the final one was the social responsiveness scale questionnaire (SRS). The SRS asked about any struggles with socialization I had, while the AQ asked about socialization and other autistic behaviors. The second session was supposed to take about an hour, but because I am a fast reader I finished much more quickly than intended.
After two weeks, I received a nine-page document with the results of the assessments I took as well as diagnoses. Though I had come in for an autism diagnosis, I was also given diagnoses of generalized anxiety disorder, and persistent depressive disorder, neither of which surprised me.
Apart from assessment results, my evaluation described my psychologist’s impression of me: that I was “appropriately dressed”, had a flat affect, and struggled to establish rapport. Any psychologist screening for autism will take note of your behavior. I still masked to some degree, but I tried to be as relaxed as possible to allow my psychologist to get a more accurate picture of my ‘natural’ communication style.
My assessment also included a list of recommendations, which included continuing therapy and medication for my mental health issues, and some specific issues I should try to focus on in therapy.
This assessment, for me, was life-changing because it confirmed that I wasn’t some sort of failure for having social issues, but rather that I was literally functioning differently than neurotypical people. I became more willing to accept my autistic behaviors and maskless, which has made me happier. I also began to speak about my autism and made autistic friends.
Outside of emotional and (some) social benefits, however, nothing has changed since my diagnosis. I could seek accommodations through my college, but I have not done so because I don’t personally need them. I did briefly cover autism in therapy, and perhaps could have seen more benefit if that had continued, but I have chosen to discontinue therapy for the time being.
While I am glad to have a diagnosis and would do it again, I do want to emphasize that, especially if you have gone most of your life undiagnosed and are not seeking accommodations, you may not need a diagnosis. I am glad to have mine, and if you believe having one will have any emotional benefit, I would encourage it. But my evaluation, even with good insurance, cost $600, which is steep, and if I had not had the financial backing of my parents I likely would not have considered the cost worth the emotional benefit. I, and most of the autistic community, are perfectly okay with self-diagnosed autistic people participating. I hope that even if you are unable to get a diagnosis, or simply don’t want one, you give yourself space to unmask and live authentically.
If, as I did, you want to do some online tests before you shell out money for a diagnosis, I highly recommend this website. It features eight assessments, most of which are translated into multiple languages, and allows you to compare yourself against suspected/diagnosed and male/female to get a better picture of your autism. Obviously, this does not substitute an actual diagnosis, but to me, it felt legitimizing to see that I scored in the range of autistic people, and empowered me to seek a diagnosis. I am realizing that this paragraph sounds a bit advertised, so I’d like to assure you that it’s not, and I honestly just love the website and believe that it is a great resource.
I am absolutely willing to answer questions about the diagnosis process if you’d like to comment.
Tori Morales (they/them) is an autistic college student writing about mental health, autism, and other topics. You can support them by using their Medium affiliate link or buying them a coffee.
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