Grownup autism: Searching for an official prognosis

A bit over a yr in the past, I began to surprise if possibly I used to be autistic.

Not one to let issues go (also referred to as hyperfixation), my exploration led me to studying scientific books about autism spectrum dysfunction (ASD) and memoirs by autistic folks, listening to varied podcasts about autism, and searching up assets and details about ASD on-line. I even began seeing a therapist who makes a speciality of working with neurodivergent sufferers and who has indicated she agrees with my self-diagnosis.

Regardless of all of that, I felt that it was necessary for me to discover an official prognosis by means of testing. The complete course of took me roughly 10 months, and having simply accomplished it, listed below are among the questions I had going into the method – with solutions from my very own expertise.

1. Do I have to be examined to establish as autistic?

From what I discovered, the quick and straightforward reply to this query is completely not. The autistic and neurodivergent neighborhood are very open to self-diagnosis, and with the myriad flaws within the medical testing mannequin for autism, many adults wrestle to get something greater than an “inconclusive” outcome from testing. If having an official autism prognosis doesn’t make a distinction to you and the assist you want to succeed, there’s no motive to spend the time, vitality, and cash to undergo the method.

I selected to undergo the method for 2 causes. First, I needed to have the ability to write about my prognosis with out having neurotypical folks query it. I view it as an underline to my prognosis in that method. Second, there are folks in my life that have been struggling to know and settle for my self-diagnosis. The testing outcome and official prognosis have helped me to maneuver my conversations with them about being autistic ahead.

2. How lengthy does autism testing take?

Whereas this reply will seemingly range, it took me roughly 10 months from placing my title on the ready listing to prognosis. 9 months of that have been spent on the ready listing, so the vast majority of my testing and prognosis occurred inside a month.

That is prone to range relying on the assets obtainable in your specific space, the kind of assist you want or don’t want, and whether or not there’s a devoted grownup testing facility and even an possibility for grownup testing at close by autism services.

3. What was the testing like?

Testing might range relying in your age, varieties of signs, the power you go to, the kind of testing skilled you’re working with, and different potential components.

My testing – which didn’t embrace the cognitive testing portion – consisted of two appointments and a number of other varieties to fill out. The primary appointment was a video dialog with the clinician, during which they requested me to supply medical historical past, why I assumed I may be autistic, and details about numerous behaviors and thought processes. At that time, there have been two choices: Both the clinician would resolve I didn’t want additional testing and finish the method, or she might refer me for additional testing. My clinician requested a follow-up in-person appointment based mostly on my responses. She additionally despatched my associate and me a number of varieties to fill out (I crammed out three to 4, and he crammed out one) to price my behaviors on numerous scales.

On the in-person appointment, my clinician started by usually asking what was occurring with me. There was no preamble or different preparation, and it took me a minute to appreciate that was, in actual fact, a part of the check. Different actions included “studying” an image guide, telling tales about numerous objects, figuring out an image, speaking about my work, and customarily speaking about my pursuits and life. The appointment was roughly 90 minutes lengthy.

Throughout this session, the clinician noticed my bodily behaviors (like eye contact or stimming), my skill to have interaction in back-and-forth dialog, my skill to establish and discuss feelings, and issues like voice modulation (whether or not my voice would get loud when speaking about issues).

4. Now what?

A few weeks after the in-person appointment, I had one other video appointment with my testing skilled, throughout which she recognized me with ASD stage one. She shared the observations she made that introduced her to this prognosis, in addition to the self-reported and other-reported behaviors she gleaned from the varieties my associate and I crammed out. She additionally emailed me a full report (which is lengthy, and I’m nonetheless working my method by means of it).

For adults particularly, the testing course of might not be as definitive as mine was. It’s not unusual for somebody to self-diagnose after which obtain an “inconclusive” prognosis. In speaking with numerous professionals, I’ve discovered that this typically has extra to do with the check and course of itself. Regardless of intensive data now being obtainable to indicate that autism is a much wider set of traits and behaviors than initially thought, many professionals offering testing companies nonetheless adhere to an older definition that tends to narrowly apply autistic behaviors to youngsters solely, and extra particularly, to male youngsters.

In case you are an grownup and are simply beginning your journey with autism prognosis, testing might or might not be for you, however there are many assets obtainable to assist in your journey. I’ve discovered essentially the most from studying numerous books and speaking with different autistic people, in addition to listening to podcasts by and with autistic folks.

Whereas I’m relieved to have an official prognosis, that in itself won’t seemingly change how I search out and organize assist for myself – one thing I’ve been studying to do over the previous yr and a half. And I imagine (and hope) that each little bit I do to coach others about what autism means for me helps another person with their very own autism journey.

Kristen Abell is director of web site and digital tasks, author, and advocate for psychological well being and neurodivergence.