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Hello readers,

Yesterday, I encountered a thought-provoking article on Facebook, courtesy of the Asperger’s/Autistic Women’s Association. It’s titled “I’m High-Functioning Autistic. Here’s What the Neurodiversity Movement Gets Wrong.”

In case you aren’t familiar with the term, “neurodiversity movement” refers to what many advocates for people with autism consider “the next step in human rights.” It is a movement that portrays autism as a normal cognitive variation with strengths and weaknesses, just like anyone else’s cognitive variations–and we all have them. Many people within the neurodiversity movement are even pushing to have autism removed from the Diagnostic and Statistical Manual of Mental Disorders.

Now, you guys know me, so you know this kind of thing makes me jump up and down, figuratively if not literally. However, author Gwendolyn Kansen raised some great points in her article about what she and others think the neurodiversity movement doesn’t yet understand about autism–what they get wrong. In a nutshell, here are a few:

  1. The neurodiversity movement seems to focus on people with autism who are the most inspirational. Often, this means high-functioning people with autism. “The neurodiversity movement doesn’t have a lot to say to lower-functioning autistics,” Kansen writes, and I believe she’s correct. The neurodiversity movement as a whole raises awareness that autism does not mean what we have for years thought it did–little to no independence or ability to socialize. That’s wonderful. Yet in doing so, the neurodiversity movement seems to have left out a whole group of people. That’s just as bad as, for instance, a Voc. Rehab service that is so busy teaching people with severe cognitive disabilities to do simple jobs, that they just about lose their minds when a client says, “Help me become a professor/engineer.”
  2. Kansen’s research indicates that over half of people with autism have an IQ below 70. They cannot live independently, not because they don’t want to but because it would be dangerous for them to do so. As much as it angers me and breaks my heart to face this, some people with autism and other disabilities cannot “give nuanced opinions” of what they think, because they can’t communicate (with the resources we have; we need to get to a place where lack of communication isn’t an issue). Some of these people will “wander off and drown” if unsupervised.
  3. Kansen knows people with autism who have “[attacked their social workers and killed their parents.”] She points out, rightly, that this is not normal behavior. It is not a natural cognitive variation when you attack or kill someone. And yes, understanding autism-motivated behavior better could help prevent this kind of thing. But, as Kansen implies, is it fair to say autism is “just” a normal variation when it can be–not always is, but can be–quite disabling and life-altering?

 

So, that got me thinking. I thought about autism and I thought about my own cerebral palsy. I thought about how angry and disheartened it makes me to hear that a high school student with a cognitive disability was placed in a job sorting items into bins–a job he may have for the rest of his life. I thought about the people close to me who say, “You need to understand that some people can’t do more than X/that some people are happy doing menial job Y.”

Honestly, sometimes I want to tell those people to shut it. I’m not the one who’s being unrealistic, they are. It is wrong to assume that just because your brain or body works differently, you should live in a group home, with somebody standing over you while you brush your teeth, and go to work cleaning up after “regular” people and sorting stuff into bins.

But then I think, what if those things are what that person needs?

Hear me clearly. I am not saying it is right to pay a PWD below the minimum, or not at all. It is wrong to give them an unskilled job when they can do more. It is wrong to place a PWD in a group home, nursing home, or sheltered workshop when they do not want it and there are other options available. It is wrong to assume that a child with severe CP or Down Syndrome or whatever would be happier in a class centered on therapy and Disney videos, than actually getting an education.

What I am saying to you is, it is just as wrong to force people into a mold of what we think is “normal.” If it has been proven that a person with autism–high- or low-functioning–can’t live alone, then we shouldn’t force him or her to do so. If a person with autism or any other disability has an IQ below 70, it is wrong to effectively say, “You have to learn what we learn, like we learn it, all the time.”

And as an advocate, finding the balance, finding what is right, is hard.

I would love it if all PWDs could live and move and be the same way temporarily able-bodied people can. I would love to see segregated workshops shut down, special ed classes retooled or gotten rid of, and all persons with disabilities able to go to Harvard and rock the world. But that may not happen. And you know what? That’s okay.

Why is it okay? Because just as not all TAB people are the same, not all persons with disabilities are the same and they don’t have to be. That person who can’t shower alone or take herself to the bathroom? She has as much right to be here and get joy out of life as a person with an IQ of 196 who studied chemistry and just happens to be blind. And, as much as it angers me and breaks my heart at times, I relearn every day that I can’t judge what a joyous life is or should be.

So where is the balance? What is right?

I don’t know, not for every person. What I do know is this:

  1. It is right to treat all people with dignity and respect.
  2. It is right to listen, or to help others communicate.
  3. It is right to acknowledge disability, but also acknowledge personhood, strength, and life. The ways in which we do that simply vary from person to person.

So no, maybe autism can’t be whittled down to a “cognitive variation.” Maybe the neurodiversity movement gets some things wrong. That’s okay. What we need to focus on is finding and achieving as much balance between ability and disability as we can, so everyone can live the lives they deserve.

 

If you’d like to read Gwendolyn Kansen’s article, go here: https://psmag.com/im-high-functioning-autistic-here-s-what-the-neurodiversity-movement-gets-wrong-b07bca1e2c86#.xl8uwaaiy

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Comments on: "The Advocate’s Balancing Act" (2)

  1. kitty22 said:

    I’ve seen articles by parents who are heartbroken that their severely cognitively disabled teen aren’t going to be able to attend university . While I feel for these parents, I think what they tend to forget is that their are plenty of TAB people who didn’t go to university straight after high school (or at all), and they do just fine.

    • Great insight! I think it hearkens back to the fact that TAB people have all these double standards for persons with disabilities. Double standards lead to stigma, which leads to people treating persons with disabilities like they’re worthless. What happened to “live and let live,” I wonder?

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