Diagnosis Story Time!

Getting a diagnosis. Seems fairly straightforward, right?

You take your kid in to see the doctor, the doctor refers them, and then – voila- diagnosis time!
At least, that’s what people always assume. Me, not so much.

I was always a “weird” kid growing up. I took things literally, constantly asked questions that everyone somehow already understood, and was bullied often.  My lack of social awareness was obvious, but it was just marked as being “quirky” or “a little different.”

Of course, my literal brain made for some laughs growing up.

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Younger me (about 5 years old) being angry at a gunfight re-enactment because I thought they were actually hurting each other instead of “solving their problems like grown-ups”. The actors are a bit too amused to keep in character.

Well-versed in the world of Sonic the Hedgehog, Underdog, or whatever else I was stuck in, I was always happy to share information I had gathered. My classmates, however, were a bit less than thrilled. My social skills difficulties became more obvious as I got older, as other girls seemed to be surpassing me in that department. Furthermore, I didn’t care about my appearance like other girls did. I wanted only comfy and sensory-friendly clothes, hated doing my hair, and honestly didn’t care at all.
My social problems became a bit more obvious when I hit middle school, especially when I only ever talked about Doctor Who and other science fiction.  I honestly didn’t know when it was acceptable to talk in groups, and often interrupted people simply because my brain had trouble keeping up – something I still struggle with.

After my brother was diagnosed with autism during that time, that also became a special interest. I delved deep into what the autism spectrum was comprised of. I read up on IEPs, studied different types of therapies available, and tried to be as knowledgeable as possible. Ironically, I didn’t realize I was autistic; I occasionally questioned the possibility, but put it away because I assumed diagnosis could only happen as a kid. I was wrong.

I’ll spare you the smaller details and go forward to age 18.

It started with my friends and my college roommate, who pointed out that I might be on the autism spectrum. I was intrigued with the idea, as I hadn’t really given it too much thought. As I met with a new therapist at the time, they suggested that I may very well be on the spectrum. Therefore, we continued treatment under the assumption that I was. I acquired a weighted blanket, began using stim toys, and started learning new ways to cope. However, I was often deterred from getting an “official” diagnosis. There are a lot of barriers to getting evaluated as an adult, ranging from financial situations to significant bias based on gender, race, and common misconceptions about autism. I was also told that there was no point to me getting evaluated, as there were no resources really available for me and I was too old for it to matter anyway.

Finally, at age 19 / almost 20, I somehow managed to get an appointment with a neuropsychologist. As many autistic adults know, this is not an easy feat. It can be difficult to get referred when you’re an adult, and even more so when you’re female-presenting. While I was mostly there due to cognitive issues (three mild TBIs can complicate matters a bit), the doctor also decided that he wanted to evaluate me for autism. If I hadn’t been there for other medical reasons, I may have not gotten the chance for evaluation at all!
I was in testing for over 7 hours, and was so exhausted and overwhelmed. I also learned that I had to wait a month to see my results, which caused a significant amount of anxiety itself.

Fast forward to January of this year. My results were sent to my university’s Disability Services, as I was overseas visiting my fiance during Christmas break. I went into the office and quietly asked for my paperwork to make copies of. As I had no idea what was on them, I waited anxiously for the staff member to bring back my copies. As I was handed the intensely detailed report, I tried to hide the mixture of anxiety and anticipation that was building up. I went outside the office and nearly squealed as I read the report. I did a checklist in my head as I read each result.

PTSD? Yeah, that’s accurate. Already had that diagnosis anyway.

Mild Neurocognitive disorder? I guess that explains a lot. 

Persistent Depressive Disorder? Oh, this replaces the MDD. Good for accuracy anyway.”

And then- my heart started racing.

“Autism Spectrum Disorder”

With three little words, you wouldn’t think they would have such an effect. I mean, I had already referred to myself as autistic. I was already mostly convinced I was probably on the spectrum. I had even written a previous blog post (since deleted because I didn’t like the format) to detail my realization of being autistic.

Yet, three little words on a piece of paper made me stop in my tracks.

My first instinct was to flap my hands excitedly, as I had waited so long for this moment.

Nearly 20 years, I had constantly thought I was broken and weird. I had several days where I thought I was simply useless and somehow defective. After my original discovery of considering being autistic, I had so many days where I wondered if I was just a terrible person – and everyone was wrong about me being on the spectrum.
Seeing it on a piece of paper gave me so much validation, and I felt almost vindicated. All those times I was called derogatory names, told I had no common sense, and that I was a “social idiot”: I was not those things. I was autistic, and it was my own normal.

My second instinct was actually anger. I was angry that it had taken so long for my neurodiversity to be properly noted, and that I spent my entire childhood struggling when I could’ve had more. I was frustrated that both of my younger brothers were diagnosed at 2 years old and that I had somehow been missed. I was angry that I had spent so many years in therapy and yet they just thought I was “quirky” and “a little weird.”
I was distressed that society wanted to ‘cure’ me of my differences, and that the world did consider my neurology a burden. I was upset at myself for not recognizing that I had it, and for not pursuing the possibility when I had the occasional thought that I might be on the spectrum. Most of all, I was afraid that this could be used against me in the future. I’d heard horror stories of autistic parents having their kids taken away only because they were autistic.

My third instinct is probably the most important one: relief and the feeling of belonging.

I felt so relieved to know I had reasons for being the way I was. I often get discouraged, especially in social situations, sensory overload, or when I go non-verbal due to stress. I was so pleased knowing that I wasn’t alone in what I was dealing with, and knowing that I could be able to find local resources. I realized that I did belong to a larger community, and that maybe everything would really be okay. I went back to my room and immediately started researching groups and organizations.

Fast forward to today:

I’m preparing for my third year in university,  and I’m back to making my spreadsheets. There’s a cat sleeping on my toes. My room is once again covered in post-it notes, reminding me to eat and brush my hair.

Papers are everywhere, as I now have a volunteer position with the Autism Society. I have been appointed as the Teen and Adult Social Scene Coordinator, which is very exciting for me. It was a bit of a surprise, as I had only went originally for an adult support group! My autistic nature makes it difficult sensory-wise, but it has quickly turned into a special interest in itself. One of the perks of autism is the hyperfocus on something I am way into. Community service is something I love to do and being autistic, it seems a perfect way to make a difference.

I have realized that my ability to get an official diagnosis is actually a bit of an oddity when it comes to adults, especially in groups that are often underrepresented when we talk about the autism spectrum. There are so many variables that impact the ability to get a diagnosis, and I am quite lucky to get diagnosed. So many others never actually get that chance.

As for myself, I’ll just keep stimming.

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