Updated: Sep 8, 2022
Nothing is really going to change if you ARE diagnosed.
It’s no secret that there’s a mountain of social stigma and fear-mongering revolving around Autism. Anti-vaxxers proudly proclaim that they would rather have a dead child than an autistic child–but that’s another shitshow for another blog.
When I was diagnosed with ADHD I was so relieved to have (some) answers and understanding of my struggles. My Autism diagnosis came 9 months later, and for a good month before my official evaluation I was 100% sure of my place somewhere on the spectrum. For me, it only added to the relief I felt after my ADHD diagnosis because I finally had the WHOLE PICTURE.
Not everyone will feel the same as I do.
Inevitably, the prospect of being autistic conjures up all the ignorant voices of people who don’t know the first thing about Autism–some of those voices might even belong to family and friends.
I announced my diagnosis with a meme…
Since my ADHD diagnosis my friends and I noticed a pattern…a LOT of us were some kind of Neurodivergent. Really? All of us? Well, it turns out we have a way of finding each other, we gravitate toward others like us, bond most with the peers that allow us to be ourselves. We have developed a theory:
If you spent your school years in the Fine Arts hallway (Band, Choir, Drama) a LOT of your friends are Neurodivergent and there’s a good chance you are too.
I was in Band. So it was no surprise to me that a friend of mine who had been in Band with me all through middle school and high school commented on my autism diagnosis meme. This was precisely what they were nervous about. The comments and replies speak for themselves.
friend: That’s what I’m nervous about :s
friend: Idk I’m just nervous about the possibility of being autistic
chaoticalsea: think of it this way. If you are [autistic], you always have been and knowing for sure doesn’t actually change anything, only brings you better understanding.
friend: that’s a good way to see it.
Now I’m not saying this perspective will banish your anxiety, but most autistic adults who end up with a late/adulthood diagnosis are in this boat for the same reason: we all adapted and masked well enough to fit into the socially acceptable spectrum of being considered “normal.”
I credit my ADHD diagnosis with helping me arrive at this perspective. It is an almost universal experience for adults diagnosed with ADHD to experience a sense of life-changing epiphany. In a way diagnosis changes EVERYTHING, but the people around us often don’t understand that feeling because nothing about us has actually changed…we just have a clinical term that now succinctly describes unique struggles and personality quirks.
It took weeks for me to come down from the high of my ADHD revelation. And in that time I really struggled with my parents’ lackluster reaction to my diagnosis.
For years up to this point, I worked nonstop on promoting and selling my books. I was a substitute teacher on the side. I worked so hard that I never gave myself a break. One year I passed up going to Scotland with my family around the holidays because I didn’t think I had the right to pass up the most lucrative time of year for selling books. While my family went on an adventure I dreamed of, I was at the local Barnes & Noble signing and selling books every day for two weeks leading up to Christmas. My lack of success at turning my books into a reliable income and achieving financial independence insisted that I wasn’t working as hard as I thought I was.
My depression and anxiety got worse and worse. I reached TOTAL meltdown while on the family vacation to London celebrating my sister’s 30th birthday and completion of graduate school. Naturally, I felt guilty for being on vacation, but I was still going to work. I made it my vacation goal to visit every bookstore I could to leave bookmarks in books of the fantasy sections.
But, while running around London with the family from one Tube station to the next across the city, I was met with an onslaught of advertisements for Stephen King’s latest title. I could not have felt any smaller at that point. I was trying to succeed in a market where success was predetermined by international publishing houses and million dollar marketing budgets. (Granted, I had no illusions of achieving Stephen King level success.) What should have offered me some relief for how hard I was being on myself just destroyed me.
I broke down. Following my family around London, unable to stop the tears or explain them.
I understand now. My ADHD and autistic brain just could not function outside of my hyper-fixation on my special interest.
At the lowest point of my depression—-still living at home with my parents at 31; every day a reminder that I hadn’t accomplished the only thing that was expected of me—-when I finally received the ADHD diagnosis that explained SO MUCH, my relief was indescribable. The release of all that weight, all the shame and guilt of still being a burden on my parents, allowed me to forgive myself, to be kind to myself instead of my near-constant emotional flagellation for not being successful like my sister who just bought her own house.
There’s no way the people around me could understand the significance of my diagnosis like I did.
And it wasn’t fair for me to expect them to.
In time I managed to accept that and also understand why they misunderstood my new hyper-fixation on ADHD to be an excuse for my shortcomings (when really I was elated to have clarity about what my struggles were and better solutions.) I should give credit where it’s due, I’m in a much better place now thanks to the help of my therapist. Separating myself from the opinions/perceptions of others takes a lot of effort for me.
There is a distinct difference between the perception of what ADHD is and what Autism is to average people with no real knowledge on the two disorders.
ADHD is treated like a joke. Autism is treated like a…well, a fate worse than death by preventable disease.
I had 9 months to realize and accept that most people didn’t take ADHD seriously and had no idea just how much havoc it actually causes in our brains. By the time I noticed that Autism explained certain things that didn’t exactly fit with ADHD, I was eager to incorporate Autism into my self-understanding. Accepting myself mattered more than what anyone else might think about me when I eventually told them I’m Autistic. I’m lucky I can say I was never really uncomfortable with the idea, which is why I can hopefully help any of my potentially autistic friends and strangers alike feel a little more at ease with the prospect.
If you ARE autistic, you always have been. Neither you nor I can control how someone else–family, friend or stranger–sees us.
As hard as I may try to help the people I love understand me, I cannot FORCE them to understand. I can’t make them listen when I explain the nuances of ADHD/ASD neurology. I can’t force them to be interested in the videos I share to help them learn. I can’t make them stop judging me for whatever sensory issues I’m having. I can’t cure anyone of their own limited perceptions, or their negative reactions to my refusal to mask my autism anymore.
When we mask our ADHD or Autism, we are prioritizing the comfort of others, usually sacrificing our own to do so.
Whether you seek diagnosis or not–whether you SHARE that diagnosis or not–you are you and you always have been.
If you are curious about Autism’s presentation in women & AFAB and finding out if you may be on the spectrum, I have created a playlist of all the wonderful YouTube videos by Autistic Women that helped me along my journey from curious, to maybe, to so sure I went looking for an Autism specialist. These wonderful Neurodivergent women helped me feel comfortable with embracing my place on the spectrum.