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  • Writer's pictureAutistic Animist

My Autism Diagnosis Journey, Part 1 (Search & Assessment)

Updated: Apr 21, 2021

For Days 3 and 4 of my 30-days-of-blogging challenge, I would like to talk a little bit about the process I went through to discover for myself and ultimately receive formal diagnosis that I am, in fact, autistic. In this first part of a (planned to be) 2-part series, I’m going to focus on the assessment process itself, what I went through, what I enjoyed about it, how I found someone I trusted to do it, and a little bit about what it means to me. In part 2, going in reverse chronological order I suppose, I will cover how I reached the decision to pursue diagnosis, how I identified myself as autistic in the first place, and prior to all that, how I first started to suspect that I was autistic.

Before I dive into the topic, I want to say a word about “self-diagnosis” or self-identification/self-discovery: specifically, I want to underscore the fact that this is valid. You are valid. However you come to discover and label yourself as autistic (if you do!), or even just “neurodivergent somehow but I’m not really sure I want to call it anything specific, or maybe I do just not yet,” it is valid. If you are 100% certain you are autistic but have no plans to pursue formal diagnosis because it seems expensive and like a pain in the ass: you are valid. If you desperately wish you had that level of external validation but don’t have access for any number of reasons--geographical, financial, personal, systemic, discriminatory, etc.--first of all, I’m deeply sorry that you’re experiencing this. But secondly and just as importantly: you are valid.

With that out of the way, I will say that for me, the process of seeking official diagnosis was something I originally determined to be expensive, unnecessary, stressful, and probably quite difficult (emotionally and logistically) for several years (as you’ll see in Part 2). Until I didn’t. Several things happened at once which switched me over from the “I don’t need a label” camp into the “it’s an ethical imperative for me to seek this formal recognition” camp and the process was very personal and specific to me. (I may write in more detail about it in the future.) I do not in any way mean to suggest that others automatically will or should go through a similar transition. But for me, when it came time to do it, it was within my budget (though not cheap), it was very important for my personal path, it was worth every penny, and it was deeply satisfying. It was actually… kind of fun.

I began searching in earnest for somewhere to do my assessment at the height of the coronavirus pandemic in 2020, which actually worked to my advantage. There were increasing opportunities for telehealth and virtual versions of everything, including (relevantly) autism assessments for adults. There were also many more books, blogs, YouTube videos, and online communities being published or forming than the first time I had looked into pursuing diagnosis (in 2018 or so). As a result, I was able to find three possible avenues for online autism assessment, all with (fairly) reasonable price tags (all things considered), a respectful and inclusive approach with adults and/or females in mind, and, of course, the accessibility of being offered virtually. Suddenly, a fair and accurate assessment (and official diagnosis) seemed within reach!

The first place I discovered was the Global and Regional Asperger Syndrome Partnership (GRASP), which had just begun offering low-cost virtual assessments with explicit inclusivity for adults, women/girls and nonbinary people, people of color, and others who have historically often been “missed” by assessors who focus on a stereotypical presentation of autism in a white, male child. I stumbled upon their announcement of their assessment service on Facebook. It was pure circumstance that I ultimately did not go through them--a glitch in their email server meant that it took a few weeks for me to hear back from them, and I had already found another option by that time.

The second place I discovered was The Adult Autism Practice, based in Ireland. I loved their emphasis on celebration of neurodiversity and the fact that they catered to adults, plus (of course) that they could offer assessments virtually. Unfortunately, they were not able to offer assessments to people in the country where I live (the United States), so this was a dead end for me, but I still appreciate and value the work they are doing.

Finally, through a combination of absolute luck and autistic persistence, I stumbled first upon autistic advocate Yo Samdy Sam’s YouTube channel, then found my way into the Discord server for her supporters, and finally discovered a link to Dr. Natalie Engelbrecht’s assessment services at Embrace ASD. This is where I ultimately found the opportunity to be assessed: respectfully, accurately, and by someone who is actually autistic herself!

The process itself (and the costs involved) are described in good detail on the Embrace ASD website, so I won’t go overboard describing them here, but I will say that my experience was almost anticlimactically satisfying. I love taking online quizzes (and having taken many screeners as a child and earlier in my process of self-discovery as an adult, I already kind of knew that I would “light up” as “super duper totally autistic” on many of these quizzes…), and the whole first part of the process consisted of several online quizzes. The bulk of the process was through written, electronic communication, did not require me to involve any of my family directly (thank goodness) and gave me plenty of space to highlight all of the reasons I suspected I might be autistic through both multiple-choice assessments and freeform writing.

It felt like submitting a final project for my self-taught course in “this is precisely how I am autistic” and receiving an excellent grade at the end. This is a painfully nerdy way to describe it, but that’s really exactly how I felt. Oh, the dopamine. I cannot tell you.

The whole assessment process culminated in a (rather enjoyable) “chat” with Dr. Engelbrecht (which was actually an adapted ADOS -- I guess? I’m not trained in this...) which was respectful and validating and ultimately gave me the opportunity to relax and be myself (and consequently display all of my more visible autistic characteristics on camera). I didn’t have to tell any stories about frogs or count toothpicks or bring my mother in to insist I was a really weird child (which she would never do--but trust me, I was), and most importantly, I never felt like I was being pathologized or forced to “prove” anything. I was just given the opportunity to say “this is me” in a variety of formats and then told, yep! You’re definitely autistic, nice work discovering it, congratulations and here are some resources to help you play to your strengths and accommodate your challenges. Deep exhale.

I want to give a final mention to the Asperger / Autism Network (AANE)’s directory of diagnosticians because I found a couple of local options through this directory as backup in case things didn’t work out with the other places I have listed. A far cry from the feeling I had of “absolutely no one, anywhere, is going to be able to recognize me as autistic even though it feels so ludicrously obvious to me” prior to assessment, I ultimately found several resources which, I believe, ultimately would have been able to accurately assess me (and one who did!). So I share these with you in case one of them could be of help to you on your journey of self-discovery. :)

Tomorrow, I will dive into the squishier topics around my diagnosis, including the emotionally agonizing journey which led up to the straightforward, matter-of-fact process of actually getting diagnosed which I described today.

Resources for Adults seeking Autism Assessment

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