The Autistic Spectrum is a Mess

@ricardoviana

I think it was a mistake to classify Asperger’s as autism. Not that it doesn’t have a rightful place within that neurological classification, but it was irresponsible in the way that cramming refugee populations into small overpopulated cities is during times of turmoil. Where there were once two famished groups there is now one scrambling for the same limited resources.

The autistic spectrum is an overcrowded, underfunded, misunderstood, and largely overlooked mess of varying conditions, talents, and disabilities whose population has many voices. It also has many differing needs, with differing opinions on identity, terminology, and stigma.

An adult with Asperger’s with limitations on eye contact and challenges with anxiety is going to have a different set of needs than an adult with autism and limited gross motor skills, or a child with Asperger’s who has limited verbal skills. In addition, they’re likely to have a very different sense of identity. This is not to say that there’s a rift between one type of autism verses another, but that an existing lack of definition becomes increasingly problematic the more variants you throw into it.

While the “functioning labels” have proven themselves to be both clumsy and archaic (and often inaccurate), the lack of having a proper designation for Autistic Person A from Autistic Person B creates a set of challenges for the autistic community. There are hundreds if not thousands of combinations of skills and disabilities within the spectrum that require much greater care. Lumping them under one term has ensured that:

1. Communicating advocacy and awareness becomes challenging. “What do we want?!” Depending on who you ask you might get a variety of different answers. Some answers may even contradict each other because of the vastness of neurodiversity across the spectrum. Parents with children that require assistance with gross and fine motor skills want increased access to occupational therapy. Adults with autism who have heard of or experienced horrors surrounding ABA will likely see most therapy as abuse. The general public won’t understand the difference, and believe that either therapy is good or therapy is bad.(Compounding the issue is that ABA is a blanket term in itself)
2. Infighting becomes a problem when many people are told to share one identity. Everyone’s perspective of autism and what it means to be autistic is going to be predicated upon their life and those on the spectrum they have listened to or connected with. One person’s story is going to be different from another’s, and when the autistic “voice” talking doesn’t align with the values or experience of a different autistic audience, this tends to create conflict.
3. Co-opting of stigma becomes dangerous. Society’s worst beliefs about autism are typically crafted from what they’ve seen in the most prohibitive of disabilities that exist on the spectrum. The inability to talk, to walk, or to self-care are the optics the neurotypical community associates with autism that create false beliefs that autistic people can’t communicate, aren’t sensitive, and don’t have emotions or individuality. When that stigma gets co-opted by autistic voices (or parents) who don’t have those challenges there is a danger in misrepresentation of need. Accessibility and accommodation suffers as a result. I once heard an autistic advocate that all a person with autism needs is acceptance. While that is the right sentiment, acceptance won’t help someone in a wheelchair get up a flight of stairs as effectively as protecting the ADA to ensure each flight of stairs comes with a ramp. Stigmas don’t go away by pretending those disabilities don’t exist, it goes away by telling people what they understand about it isn’t true. (read: Ido in Autismland)

Part of this challenge is being addressed by Autism Speaks in their Strategic Plan for Science 2018–2020, wherein the emphasis in research is based upon dissecting out the spectrum for personalized support. However, Autism Speaks has a very troubling history of ignoring the voices within the autistic community. In addition, the issues described may require a more human, and less clinical, approach to resolve.

It’s 2018. We accept many genders. We embrace diversity. Why can’t we have many types of autism?