I am Autistic. Here’s What I Need You to Know.
This week is Neurodiversity Celebration Week, and April is Autism Acceptance Month. These occasions give us an opportunity to “challenge stereotypes and misconceptions about neurological differences.”
I want to take a moment to share about my own autism diagnosis. At 35 years old I have confirmed, through a formal diagnosis, something I have suspected for years. I am autistic.
Let me just say, this process was not very accessible. It was costly, time-consuming, and required access to healthcare. What we know about Autism Spectrum Disorder is based mostly on research about little white boys. For me, that meant only my age was an obstacle to diagnosis — and it was. My intelligence and life skills have allowed me to pass for neurotypical for years. Formal diagnosis is not as accessible to people less privileged than me. I won’t speak for them though, because the autism community is constantly being spoken for by others already.
“BuT yOu DoN’t SeEM aUtiStic!”
Oh, is that so? Why, because your aunt’s sister’s brother’s boy is “on the spectrum” and is “worse” than me? Maybe they are non-verbal, have an additional developmental disability, or flap their hands more?
The fact is autistic people share common traits and challenges, but also have myriad differences in their experiences. I am lucky that I require little support to live an independent life. I successfully graduated from college, including a graduate degree in business, and I have had a somewhat successful career. I’ve also struggled at times with things others might think of as easy. These stories are for another time.
Today, I’ll say this:
- Autism Spectrum Disorder is called that because there is a wide spectrum of experiences of autism. It is not because there is a singular, linear scale of low- to high-functioning.
- I am autistic. I do not have Asperger’s Syndrome. That is no longer a recognized diagnosis, and it is often used to compare disabled people to each other, attributing greater value to those in need of less support. Other folks have written eloquently about why we don’t use that term anymore, including Asperger’s disturbing history in Nazi Germany.
- We are not fighting autism. It is called a disorder because it comes with challenges. Autism in and of itself is not good or bad.
- We do not need a cure for autism. We just need acceptance. Neurological differences are here to stay and should be celebrated, even if it can be hard being different.
- We do need a cure for ableism. Like most people with disabilities, autistic people struggle because the world we live in is hostile to us. We may need accommodations. I know that what I needed most of my life was less pressure to conform to what people think of as normal. All these years of hiding who I am caused depression and anxiety. I could have been spared that pain if our society was one in which it was safe to be different.
- We don’t need therapy — at least not the kind of therapy that treats us like dogs and seeks to modify our behavior. We all (neurodivergent and neurotypical) might benefit from therapy to help us process our emotions, heal our trauma, and live healthier and happier lives. We do not need fixing.
I’ll close with this:
If you feel you might have more to learn about autism or other neurological differences, educate yourself. Take a workshop or read a book. I’d recommend Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew about Growing Up, Acceptance, and Identity by Emily Paige Ballou, Sharon Davanport, and Morénike Giwa Onaiwu. While we’re at it, I would caution against any literature that centers on the experience of caregivers over autistic people or uses deficit-based language.
If you feel like supporting the autism community, and have the capacity to give, please donate to the Autism Society of Minnesota, which we lovingly call AuSM. They have welcomed my family to Minnesota and have already been a wonderful resource to us.