Adult autism: Seeking an official diagnosis

A little over a year ago, I started to wonder if maybe I was autistic.

I’m not one to let things go (aka hyperfixation), my exploration led me to read scientific books on autism spectrum disorder (ASD) and memoirs by autistic people, listen to various autism podcasts, and search for ASD resources and information online. I even started seeing a therapist who specializes in working with neurodivergent patients and who has indicated that he agrees with my self-diagnosis.

Despite all of that, I felt it was important for me to explore an official diagnosis through testing. The entire process took me approximately 10 months, and having just completed it, these are some of the questions I had going into the process, with answers from my own experience.

1. Do I need to take a test to identify myself as autistic?

From what I learned, the short and easy answer to this question is absolutely not. The autistic and neurodivergent community is very open to self-diagnosis, and with the countless flaws in the medical testing model for autism, many adults struggle to get anything more than an “inconclusive” test result. If having an official diagnosis of autism makes no difference to you or the support you need to succeed, there is no reason to spend time, energy and money going through the process.

I chose to follow the process for two reasons. First, I wanted to be able to write about my diagnosis without neurotypical people questioning it. I see it as underscoring my diagnosis in that way. Secondly, there are people in my life who were struggling to understand and accept my self-diagnosis. The test result and official diagnosis have helped fuel my conversations with them about autism.

2. How long do autism tests take?

While this answer will likely vary, it took me approximately 10 months from putting my name on the waitlist to diagnosis. Nine months of that time was spent on the waiting list, so most of my tests and diagnoses were done in one month.

This will likely vary depending on the resources available in your particular area, the type of support you need or not, and whether there is a center dedicated to testing adults or even an option for testing adults in nearby autism facilities.

3. How were the tests?

Tests may vary depending on your age, the types of symptoms, the facility you go to, the type of testing professional you work with, and other possible factors.

My tests, which did not include the cognitive testing portion, consisted of two appointments and several forms to fill out. The first appointment was a video conversation with the doctor, in which they asked me to tell them my medical history, why I thought I might be autistic, and information about various behaviors and thought processes. At that point, there were two options: either the doctor would decide that he didn’t need any more testing and end the process, or he could refer me for more testing. My doctor requested an in-person follow-up appointment based on my answers. He also sent my partner and me several forms to fill out (I filled out three or four and he filled out one) to rate my behaviors on various scales.

At the in-person appointment, my doctor began by asking me generally what was happening to me. There was no preamble or any other preparation, and it took me a minute to realize that this was, in fact, part of the test. Other activities included “reading” a picture book, telling stories about various objects, identifying a picture, talking about my work, and generally talking about my interests and life. The appointment lasted approximately 90 minutes.

During this session, the doctor observed my physical behaviors (such as eye contact or stimulating), my ability to engage in back-and-forth conversations, my ability to identify and talk about emotions, and things like voice modulation (whether my voice would rise louder when talking about things).

4. Now what?

A couple of weeks after the in-person appointment, I had another video appointment with my testing professional, during which she diagnosed me ASD level one. She shared observations she made of herself that led to this diagnosis, as well as self-reported and other-reported behaviors she gleaned from the forms my partner and I completed. She also emailed me a full report (which is longand I’m still working on it).

Especially for adults, the testing process may not be as definitive as mine was. It is not uncommon for someone to self-diagnose and then receive an “inconclusive” diagnosis. In speaking with several professionals, I have learned that this often has more to do with the test and the process itself. Although ample information is now available demonstrating that autism is a much broader set of characteristics and behaviors than originally thought, many professionals who provide testing services still adhere to an older definition that tends to Strictly apply autistic behaviors only to children.and more specifically, to male children.

If you are an adult and are just beginning your journey with an autism diagnosis, testing may or may not be for you, but there are many resources available to help you on your journey. I have learned more than reading several books and talking to other autistic people, as well as listening to podcasts written by and with autistic people.

While I’m relieved to have an official diagnosis, that in itself probably won’t change the way I seek out and organize support for myself, something I’ve been learning to do over the past year and a half. And I believe (and hope) that every little bit I do to educate others about what autism means to me will help someone else on their own autism journey.

Kristen Abell is director of websites and digital projects, writerand advocate for mental health and neurodivergence.