Adult Autism & ADHD Diagnosis: My Personal Experience
For a while now, I’ve been struggling with the feeling that I don’t know my authentic self. “Authenticity” was one of my 2021 words of the year because of this! At that time, I’d only just begun toying with the idea of autism and ADHD. After a lot of research into these conditions and the depths of myself and my memories, I decided to pursue an adult autism & ADHD diagnosis.
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Paired with a growing understanding of my physical conditions, this process has been eye-opening. It’s not, by any means, a firm conclusion—I still have a long way to go towards that authentic self I’m working towards. But, even still, I’ve gained a lot of insight into who I am and why so many of my experiences have happened in the way they have.
Learning about adult autism in women
Like many recently diagnosed adult autistics, I first came across adult autism–and autism in girls/women/AFAB individuals–online. I’m not sure of the very first references that caught my eye, but, along the way, I landed on a few particular creators who’ve been absolute assets:
Before this, I really only knew about autism in stereotypes (Sheldon Cooper, anyone?). Following these creators and their journeys has been incredible, and it’s given me insight into not just the reality of the autistic experience but, in particular, how it manifests in those assigned female at birth/raised as girls.
Learning about Afab ADHD
Similarly, my initial knowledge of ADHD was limited to stereotypes. Even as I dove down the research rabbit hole that is autism, I dismissed ADHD experiences that resonated with me because there is so much overlap between the conditions. And yet, something in the back of my mind noted these.
When it became more apparent that I might have ADHD myself (more on that later), I came across the How to ADHD channel on YouTube, and everything sort of fell into place. Jessica is incredible, and her videos should be “required reading” for anyone (but especially girls/women/AFAB) thinking they might have ADHD.
My Embrace Autism Experience
Before diving into my autism diagnosis, I want to acknowledge the privilege that comes with being able to pursue a formal assessment, especially an out-of-pocket one. The only way I could make this happen was with an unaffiliated payment plan (through Affirm, to be exact), and, even then, I recognize that this has a degree of financial privilege as well.
With that in mind, I didn’t think I would have the chance to pursue an Embrace Autism assessment when I first came across the website. Of course, self-diagnosis is entirely valid, especially given the barriers that women, POC, and others deal with in this context. I have “good” insurance by US standards, but I couldn’t pursue an adult diagnosis within that coverage. For me, though, I needed that “official” diagnosis to stop doubting my understanding of myself and my experiences.
Whether pursuing a formal diagnosis or learning more about autism (and related concepts, like alexithymia), the Embrace Autism website is an incredible resource. I’ve seen plenty of other neurodivergent folks using the tests and information on the site to aid in self-diagnosis or a better understanding of autism and being autistic. If you’re unable to seek out a formal diagnosis or you are content with self-diagnosis, this is especially helpful; taking these tests and understanding the results is an incredibly informative process in and of itself.
About Embrace Autism
Embrace Autism describes itself as “THE place to find research & experience-based autism content for personal elucidation & empowerment. By autistic people, for autistic people.” The primary face behind the scenes is Dr. Natalie Engelbrecht, a psychotherapist and naturopathic doctor. She is joined by Eva Silverant (who you’ll see behind much of the EA social media presence)and others who are committed to, quite literally, embracing autism. They bring together the resources on the EA website, these autistic-led assessments, and so much more.
Most importantly, Dr. Engelbrecht and co. are nearly all (if not entirely) autistic/neurodivergent themselves. If you’re concerned about allistic healthcare providers overlooking your experience because it doesn’t align with the conventional idea of autism, this crucial element makes Embrace Autism so appealing.
EMbrace Autism Screening Questionnaire
If you are interested in pursuing an autism diagnosis through Embrace Autism, you’ll begin with the screening questionnaire. This step doesn’t supply a formal diagnosis but, instead, offers insight into whether the “real” diagnostic process is warranted. You’ll move through the questionnaire, which allows you to reflect on your experiences in light of the DSM-5 criteria for autism and a collection of psychometric tests.
You’ll receive a 10-page report based on this data, indicating whether your responses suggest a likelihood of autism. Assuming this is the case, you’ll proceed with the diagnostic assessment.
Screening Psychometry:
- AQ
- RAADS–R
- CAT-Q
- VIA
- RBQ-2A
- Aspie Quiz
My experience with the screening portion of the assessment was pretty straightforward. I’d put a lot of thought into the criteria beforehand and dredged up some memories in the process, making them easier to recall in the moment. I’d also taken “practice” psychometric tests earlier, having used the various links on the EA site in developing my own initial self-diagnosis. All-in-all, I think I finished this portion in one hyperfocused evening.
When I received my screening report a few weeks later, my results were “highly indicative” of autism, and continuing the process was warranted.
Embrace Autism Diagnostic Assessment
Like the screening portion of the process, an Embrace Autism diagnosis begins with a questionnaire and psychometric tests. This is what leads to your diagnostic interview a few weeks later and an ultimate diagnosis (or lack thereof).
Diagnostic Psychometry:
- ASRS-v1.1
- EQ
- SQ–R
- ESQ
- TEQ
- TAS-20
Pre-Diagnostic Interview: Beyond adult autism
This was by far the part of this experience that I was most anxious about (perhaps tied with the cost). I don’t do well with phone/video calls, in a combination of anxiety, PTSD, and auditory processing difficulties–and, I know now, autism. With that in mind, I suppose this shows just how invested I’ve been in getting answers. I was willing to face one of my greatest triggers to get there!
In the time between my screening and eventual interview, I’d actually taken a similar step by joining PlushCare and meeting with my incredible primary care physician via video. This was plenty anxiety-inducing too but, after having such a positive experience with my doctor (she’s truly the nicest person I’ve ever met!), this interview seemed a bit less daunting. Joined by the fact that Dr. Engelbrecht herself is autistic and inevitably encounters others who struggle with this sort of communication, my anxiety became more of a nervous anticipation.
Once I was able to schedule my interview, I knew for sure what conditions would be screened for at this stage: autism, ADHD, alexithymia, PTSD, and C-PTSD. I’d ended up on a different page of the website earlier that listed relevant conditions as autism, ADHD, and Ehlers-Danlos syndrome (EDS), so this confirmation was much-appreciated. While I’ve suspected EDS another form of hypermobility might be behind some of my joint pain (I’m already diagnosed with fibromyalgia, as well as suspected ME/CFS & POTS and my various other conditions), the thought of verifying a long-since-assumed PTSD diagnosis was especially welcome.
Of course, this came with some questions, too: How have the traumas I’ve endured interacted with my autistic traits? Have I gone through certain experiences because of my autism? It seems painfully likely, in retrospect, that a lot of situations could have been avoided if I were more adept at recognising social cues.
Alexithymia, though, was an unfamiliar concept prior to finding EA. Scientific American defines alexithymia as “the inability to recognize emotions and their subtleties and textures.” As I learnt more, I could hardly believe it—this symptom made so much sense! I’ve always been an overly empathetic, emotional person but, despite this, I struggle to put words to my feelings. This is hardly ideal when you make a living out of putting words to things! The idea that my discomfort behind the question of “how does _____ make you feel?” could stem from a legitimate reason was such a comfort.
Embrace autism diagnostic interview
When the day of my interview came, I adjusted my work hours accordingly (thankfully, my role is really flexible so I can squeeze appointments in and simply shift my shifts to accommodate them) and tried to prepare. I put together my notes from the previous steps in the process and put on my coziest sweatshirt for a bit of extra comfort. Then, I actually sat down to draft this blog post! At this point, I could say with pretty strong confidence that the results would confirm my self-diagnosis.
The interview itself is held through Dr. Engelbrecht’s portal via Psychology Today. Mine started off on an unconventional high note—Dr. Engelbrecht was running a few minutes late and sent a message saying as much. This meant so much as the anxiety would have hit hard otherwise!
Once we were both settled in, the interview itself was pretty straightforward. She asked a few questions following up on my previous answers and experiences. A personal favourite? I mentioned having the hallmark signs of PTSD, though I couldn’t say for sure that I had…to which she replied, “Oh, you do.” This seemingly simple response had a tremendous impact on me! After dealing with symptoms for years and struggling to come terms with an assumed but unconfirmed diagnosis, this confirmation was absolutely life-changing.
Embrace Autism Diagnostic Report
Finally, after a bit more waiting, I had my report in hand. This was by far the shortest wait time between stages of the screening/diagnostic process–to paraphrase Dr. Engelbrecht, I have a pretty textbook case so the medical review would be quick and easy (I opted for this add-on for an added layer of confirmation, just in case I should need to request accommodations in the near future).
Most importantly, this report came with the final “gold star” (I mean, that’s what it felt like!). After several years’ self-diagnosis and a lifetime of wondering why I seemed so different from my peers, I had a formal ICD-coded diagnosis for both autism and ADHD.
I did have to follow up for confirmation on my PTSD (though she’d verbally confirmed this during our interview, the formal diagnosis was initially missing from the final report) but, in yet another dose of validation, my traumas were confirmed, too. I was absolutely ecstatic!
It took a while for me to get past the stereotypical view of autism I once held, much less recognise my own self-diagnosis. It’s no surprise that the route from self-diagnosis to formal diagnostic report was a lengthy one, too! Similarly, the process wasn’t a cheap one==I’ll be paying off the Affirm loan for quite a while yet–but I’m nevertheless grateful for this incredible resource Embrace Autism offers.
If it’s in your budget, whether directly or through a pay-later service like Affirm, I absolutely recommend Embrace Autism for an adult autism screening or diagnosis. If you’re interested in saving up over time, be sure to spend some time on their website in the meantime. There are so many assessments you can work through and insights you can find in their articles. In short, embrace-autism.com is an invaluable resource for anyone who suspects they may be autistic or identifies as autistic without a formal diagnosis. Even if you’re already diagnosed, I’m sure you’ll find worthwhile information from throughout the website or EA social media profiles.
