I had the immense privilege of being diagnosed autistic at the age of twenty-nine. Outsiders may not understand why I say this event was a privilege. Why would I be happy about receiving a diagnosis that will stay with me for the rest of my life?
Because that report changed my life.
The document that re-wrote my history, clarifying everything. It opened my eyes and wholly altered me by bringing me back to who I was to begin with before I started being who the world wanted me to be.
This information was essential to my life, to my physical health, to my sense of self-worth, and getting my mental health on track.
Diagnosis is out of reach for many or maybe ill-advised, depending on the situation and climate. Waitlists are years long in some parts of the world, and self-diagnosis has rapidly become an accepted norm within the autistic community.
I’m fortunate to have been diagnosed.
I’m lucky my childhood was well-documented, with lots of videotapes, and I had reliable living relatives to speak about my development. I was fortunate to have the resources and doctors to refer me to an appropriate specialist in my area, and it was a blessing the person diagnosing me didn’t think autism was synonymous with broken.
Other autistic people may not be as lucky.
They may never accidentally stumble across a book or video created by an autistic artist and find themselves digging until they are knee-deep in neurodiversity. They may be unemployed, without insurance, medical support, or access to family history, needed for a diagnosis. They may have been diagnosed with the wrong thing many times before being diagnosed autistic – if they ever find the correct information at all.
There are parts of the world and situations where an autism diagnosis can be helpful, allowing autistics who meet specific criteria to receive benefits. I’m not currently getting benefits, but I do use my diagnosis to request reasonable accommodations in the workplace, allowing me to stay employed in a very high demand field.
The information has empowered me in other ways.
Before, when I was trying to operate in a non-autistic way, I was not honoring my boundaries and limitations and often pushed myself past burnout, resulting in neurological symptoms and physical sickness. Finally, learning to live autistically has helped me to get my mental and physical health under control – after years of struggling to do so.
Unfortunately, autism diagnosis has danger too. I’ve heard horror stories of people being medicated, ostracized, and even institutionalized. Misdiagnosis is rampant. Many autistic women report being misdiagnosed with many things, often mood disorders, before finally finding out they were autistic.
Personal situations, the possibility of losing a child, jobs, or one’s autonomy may also make official diagnosis unfavorable for some IF they can even access it in the first place. The general human population doesn’t have a good understanding of what autism is. Most of what mainstream society knows about autistic people is highly exaggerated or sensationalized.
When I tell people I’m autistic, people now assume I’m like The Good Doctor, which I guess is nice to hear after Rain Main being the primary assumption for many years, but it is still inaccurate. Yes, his visual thinking is illustrated almost perfectly, but his character still feels like a bad diagnostic stereotype. I don’t relate to this autistic figure as I do with REAL autistic people.
Good autistic representation in mainstream media is almost impossible (maybe impossible to find). We are a very diverse group of people who come in all ages, races, genders, and sexualities. A large percentage of autistic people consider themselves LGBTQIA, but, still, most autistic representation in media is straight, white, and often male.
Where are the autistic minorities in TV and media?
Autism isn’t a straight white condition – these genetics cross all races and classes. There is a massive disparity in the representation and this influences public perception of what “autism looks like.”
People are often told they “couldn’t be autistic” based on myths like “autistic people can’t engage in conversations” and “autistic people don’t have empathy or understand humor.” If referring doctors know more than tired stereotypes, they may not see the benefit in adult diagnosis.
Autistic people have been told things like “You’ve made it this far, keep going” or “you wouldn’t qualify for any services, so there is no point” despite many autistic adults sharing that this information is essential and life-changing.
This month, because we need to fix this access issue, I ask the community how this information has been transformative.
#ActuallyAutistic #AskingAutistics who were late discovered (or diagnosed): Why was discovering that you are autistic life changing? How has this information changed your life?
I’m MUCH kinder to myself. I realise so many of my stresses aren’t something I can magic away by telling myself to “get over it”, and consequently I’m calmer overall.
I spent almost 30 years thinking I was broken. I believed them when they told pre dx me that I was a monster. Finding out I’m #ActuallyAutistic let me rebuild myself. It’s taken more than 3 years and counting but I finally get to be me not someone pretending to be NT and failing.
Ashlea McKay, @AshleaMcKay
I cried when I got my diagnosis. Validation and an explanation for EVERYTHING. I loved learning I’m not a broken NT, but a perfectly normal autie. The ugly duckling often comes to mind. 💖
Lisa Muise, @EmeraldRuby
I give myself more breaks. I’m gentler with myself talk instead of thinking I’m a failure I remind myself I need more time
For the first time in my life, I felt like I wasn’t broken, like I actually made sense. It was such an immense relief. Also, I was finally able to cut myself some slack, and stop beating myself up for things I simply couldn’t help.
My mental health has gotten so much better because I know that some things take me more energy than NTs and I’m kinder to myself about what is difficult for me. I let myself rest when I need it without feeling guilty for not being productive
Lauren Yates, @maraRouge6
Now I can see my tribe, and they can see me. We see ourselves in each other, and it is the most stirring feeling. I don’t feel so alone any more. It feels much more like we’re making this journey together. I can’t tell you how much I needed that. #ActuallyAutistic
Michael Phillips, @TheFibreman
It made me understand myself and make adjustments to better the quality of my life.
Jennifer Lavoie, @writerjenlavoie
I stopped constantly fighting my body/brain cuz I realized that I knew what was best for my body all along. I’d just been conditioned to believe that I was NT, & trained to only do what was best for NT ppl, which is why I struggle so much. Now I’m learning that I can trust myself
Read more #AskingAutistics articles by Christa Holmans, Neurodivergent Rebel
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