April 2d is world Autism awareness day, with April becoming Autism acceptance month. With 1 in 59 children diagnosed on the Autism spectrum, the world is now learning how neurodiverse the planet truly is.
There is a spectrum of social and cultural issues within the Autism community that is being debated in online forums and in the public sector. In this blog I’ll look at these issues and give my take.
Representation in mainstream media is one of the hardest parts of ASD for those actually on the spectrum. It is hard to find TV and movies that are made for and by Autistic cast members. Society can find it hard to accept Autism when neurotpyical (NT) people write the script.
What is worse is that the internet is flooded with so much of what the disable community calls inspiration porn. These cute videos show someone with a disability doing something normal, and being celebrated for living a typical life. These are patronizing and tell the public that a person on the spectrum can’t live a typical life.
Autism savants are found in about 10% of the Autistic population, yet have become a trope in mainstream media. This started with the movie Rain Man
and has continued to today with TV shows like “The Good Doctor” and “Atypical“. While these shows do have Autistic consultants on hand, they miss out on the fact that they can in fact have Autistic actors play lead and supporting roles. The savant trope is a hard plot line for Hollywood to lose.
The best representation in the media has come from Sesame Street. In 2017 they introduced Julia, a Muppet with Autism. This year they expanded this to include Julia’s whole family. Sesame Street has done an amazing job of representing and fully developing Julia’s character with the Autism community. Sesame Street is leading the way to show that Autistic charters can be lead character in media. Julia’s family includes mother and art teacher Elaina, father and sax player Daniel, brother Sam and dog Rose.
Sesame Street is doing a great service by showing that the whole family is involved with Autistic people.
Autism Spectrum Language
In this age of identity politics and having a social label for everything, the language that the Autism community uses has become a dividing point itself.
Person first language is seen as a way to humanize what society has previously seen as a disease as a sole identity of the person. It also attempts to separate Autism from the person. Person first language has a noble intent, but there are a few issues. First off it can make sentences too long when you repeat person with Autism (PWA). Second, having the person and Autism separate does not do the person justice.
Identity first language recognizes that Autism is an integral part of the person. It recognizes that you can’t remove the neurological difference from the person
Call me Stan…
While I do want people to know I’m Autistic, I’d like to think that I’m more then a diagnosis. I’m a son, teacher, 3D printer, and brother as well. You can ask about what my needs are (thank you for your acceptance), but please also ask me about my favorite foods, travel experiences, or favorite 3d printing filaments as well.
The autistic community has developed abbreviations for commonly used terms, such as:
- Aspie – a person with Asperger syndrome.
- Autie – an autistic person. It can be contrasted with aspie to refer to those specifically diagnosed with classic autism.
- Autistics and Cousins (AC) — a cover term including aspies, auties, and their “cousins”, i.e. people with some autistic traits but no formal diagnosis.
- Neurodiversity – tolerance of people regardless of neurological makeup.
- Neurotypical (NT) – a person who does not have any neurological disorders. Often used to describe an individual who is not on the autism spectrum.
For me I see the intent of both forms of language to humanize autistic people. While I use both forms, I’ve found I’ve sided with identity first language more. It describes me more accurately that I’m an Autistic person.
Awareness Vs. Acceptance
This is the biggest debate within the Autism community. Organizations like Autism Speaks believe in a medical model of disability and are actively trying to cure Autism. Others like the Autistic Self Advocacy Network see Autism as a neurological difference, not a disease.
Awareness about Autism is a noble goal when the sole intent is to inform the public that Autism is real. However Autism Speaks (AS) has been controversial from their foundation. AS has advocated that Autism is something to be cured, and have raised extensive funds for research.
There is a large Autism acceptance movement that advocates that Autism is a variation in the human genome, not a disease to be removed from the person. The Autism rights movement is working to show that Autism is a genetic variation, and that society should accept Autistic people like any other minority group. Sesame Street has demonstrated this with Julia.
Autism Speaks and those that say Autistic people should be cured are a danger. As we learn more about Autism, we learn that it will be difficult if not impossible to cure. Would AS promote changing a persons DNA or radical invasive treatments to force an Autistic person to fit into their view of normal? Autism Speaks is also trying to change what I recognize now is a fundamental part of who I am as a person.
It ain’t broke don’t fix it
Awareness (cure) and acceptance are struggles that all families on the spectrum have wrestled with. Autistic people also must learn about themselves and decide what they want.
Growing up I struggled with my undiagnosed Autism. In times of self-loathing I would wish for a magic cure, something that would let me have friends and be “normal”. If I could do a Thanos snap and mystically remove my unnamed shadow (Autism) there were time I would have.
I realize now that there is nothing to cure. The issues I dealt with were in how my peers interacted with me. They made a choice to bully and exclude me based on who I was, not vice versa. Anyone trying to “cure” me is trying to remove a part of me.
I have Autism. I can’t separate Autism from myself. Nor should I have to.