There are so many pieces to my autism diagnosis story that I’ve touched on in my blog, but I realized that I haven’t told the whole story in one place yet. I’d like to share it in order to show that it can be very roundabout and the realization can take a long time even when things are right in front of you. Buckle up- this is a long one! Since I love puzzles and always have, I view my journey as a series of puzzle pieces locking together to create a full picture (not to be associated with the ableist autism puzzle piece logo and symbol some use!).
Puzzle Piece 1: The Paternity Surprise
This is a much larger story that I may share someday, but in early Dec. 2019 I found out that the dad who raised me was not my birth father. To say this was a shock is a massive understatement! At the same time, I found out that my birth father had another daughter, my “new” half-sister! I had this incredible urge to visit her and her mother to learn more about my birth father, so I flew to Tucson on New Year’s Day.
There is so much more I could share about this experience, but I want to focus on a key conversation I had with my sister on that trip. She asked me if I ever thought I might be neurodivergent, because she was pretty sure that our father was autistic and had ADHD. I laugh now that my response was a pretty certain, “No.” I thought I knew what these things looked like and didn’t think they applied to me. But this was a critical first puzzle piece, because I needed that family history to complete the picture. I also found out that my birth father was hypermobile and had many Ehlers Danlos Syndrome traits, which helped me get my EDS diagnosis a few months later. It turns out that knowing your accurate family medical history is pretty important!
Puzzle Piece 2: Accurate Autism Understanding
Around March 2020, at the same time the world was shutting down, I was working on a project for the Equity Committee at my daughters’ elementary school. Each year we planned a book club for parents around a topic that promoted inclusion and understanding. This year we wanted to focus on neurodivergence and I had volunteered to find the best book for the topic, as I’d done in the past. I did my usual research and checked about ten books out of the library to peruse.
This was when the wool started to come off my eyes. I couldn’t believe how little I had known about what autism really looked like! And within that new understanding came a recognition of myself in these traits I was reading about. I started to wonder. I brought it up with my therapist of the previous five years and she practically scoffed at me, telling me it wasn’t likely that I was autistic. She seemed to see me as a hypochondriac when I was trying to understand myself. So I set my ideas aside, but continued to learn about autism through social media and books.
Puzzle Piece 3: Sensory Processing Disorder
As I shared in a previous blog post, I realized in the summer of 2020 that I had major sensory sensitivities. The pandemic shutdown was a critical part of this realization, because I needed a break from my sensory overwhelm to realize that it was happening. I proceeded to see an occupational therapist, who diagnosed me with Sensory Processing Disorder and helped me with a sensory diet. And though it wasn’t part of our discussions, I knew from my research that sensory challenges were related to autism, so it gave me even more evidence and another important puzzle piece.
Puzzle Piece 4: An Official Diagnosis
Finally, in fall of 2020 I decided to pursue an official diagnosis with a local psychologist who looked to have a good track record with diagnosing women. I had learned through social media that many psychologists don’t understand what autism looks like in women and can tell women that they can’t be autistic because they make eye contact, or because they’re married, etc. But I had the best experience with my diagnosis! And after a very anxious few weeks of online meetings and waiting, she told me that I’m autistic.
It’s hard to describe how I felt in that moment. On the one hand, I felt so validated! After dealing with people not recognizing or even denying my autism for so long, it felt amazing to be told that I did know myself well enough to know what fit me. And after a lifetime of receiving other diagnoses like depression, bipolar, and borderline personality disorder that never seemed to fit, I had the answer.
But on the other hand, I felt enormous grief. For one, I felt like I was broken beyond repair. My then-husband confirmed this feeling by recommending that I not tell people about my autism. My internalized ableism had a tight hold on me then and I felt a lot of shame in my diagnosis. And in addition, I was grieving the fact that for 42 years I had struggled without the critical information that could’ve helped me all along. It was not a fun feeling.
These four puzzle pieces brought me on my journey to get a clear picture of myself as an autistic adult. So now I want to help others on that journey. I want to provide accurate information about autism along with stories that others can relate to. I want to provide sensory empowerment support. I want to ease the internalized ableism and shame that many autistic individuals feel. I want to share resources and tips for autistic self care. I want to give others a framework for becoming proud autistic adults themselves!
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