The Problem with the Autistic Diagnosis
The people who set diagnostic criteria should bring back Aspberger’s Syndrome. Here is why:
A few days ago a post popped up on Facebook regarding Autistic Spectrum Disorder being a mental disability--in other words, if you are autistic, you are, in most cases, intellectually challenged.
The woman who posted it went on to say that diagnosed with ASD who are NOT intellectually challenged should refrain from saying so, and from making any other distinctions between themselves and ASD people who are in diapers as adults. Saying things like “I have autism and I pay taxes” or “and I have a job” was ableist and hurt the ASD community as a whole and the ones with other types of symptoms, such as intellectual disabilities in particular.
I blocked her immediately, but could not stop thinking about it. She is factually and morally wrong about all of it and is seeking to shame me and those like me for not being “disabled enough” and for accurately portraying ourselves.
Right now there are three “levels”. In the past, a portion of those falling in what is now “level one” used to have Asperger’s. This was changed to suit the insurance industry and the change has quite predictably failed us.
First of all, ASD is not the same as an intellectual disability, nor is it tied to same. A certain portion of us are intellectually gifted. Some fall in the middle, and those at “level 3” may, indeed, be intellectually disabled.
Why does it matter in terms of categorizing the disability? Because it takes away from the actual gifts of those who are gifted. We end up with a woman on Facebook shaming us for being capable, in the ways that we are capable.
Second, it almost guarantees that none of us get the type of support we actually need. There are people right now who DO need 24/7 care. Who will never be entirely verbal. Who may, indeed, be in diapers all their lives. And, they are still humans. They should get all that they need.
But that has no bearing on what I need as a high IQ neurodivergent person. I do not need supervision. I am the opposite of non-verbal, that is to say I am hyperlexic. My pattern recognition skills are top notch. I got all A’s in school in the classes I showed up for.
This does not negate the disability. I chase dopamine. I have trouble with filling out even simple forms. Organizing my own house is hard, though I could organize the hell out of yours. I am socially awkward in person unless I know you and you get me.
The school system completely failed me because they have no place for people like me.
What support do I need? Help with things like filing taxes and filling out forms. Clerical support. A house cleaner who has some organizing skills. Good tools. A consistent friend group tolerant of the neurospicy. An Employer who knows how to elicit my best, or a really good team for my own business. Sources of dopamine that are not damaging or dangerous. I can think of others, but none of them are on the level of requiring a caretaker.
I would have loved to have had gainful employment that made sense. I am not talking about “accommodations” but rather about job description. Use my best qualities--shut me in a room with a problem and let me generate solutions. Tell me what you want to create and let me generate ideas. I would have been very useful to some company--but never got the chance because I could not jump through the hoops to get there.
So instead, I created my own little one person businesses with the resources I had. I cleaned houses. I did organizing for other people. I did catering as a one person company under the table and extralegally. I published a regional magazine with print circulation of 5000 a month. In my younger days I dealt weed.
And now, I write. Which produces barely enough to live on, but it is all mine.
There are and have been people on the spectrum who DO attain success in the outer world. Just as sociopaths are over-represented in the C-Suite, ASD neurotypes are over-represented among the tech billionaires. Before that they built bridges and cathedrals. They were called “odd” or “eccentric”. But every one of them had a support system of the type I wish I had. And that is why they were able to break the code.
This is just one person’s story but I am not alone. There are a decent number of under-employed and under-served neurodivergents who could both live a better life and make a much bigger contribution if they were better understood. And that is why we need Asperger’s back as a diagnosis. And probably a few more designations to cover true the nuance of “the spectrum”.
Saying so is not ableist. I will not make myself small for anyone. And the community should never ask that of us.
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