Teach Autistic Youth They Have a Community (Part One)

Other Autistics have written on the importance of disclosing an autism diagnosis to children. I fully agree. I also think knowing a diagnosis is a powerful tool in many ways, but it is not the only obligation of parents. I knew immediately about my ADHD diagnosis at age 7 or 8, then later my autism diagnosis at 14. I didn’t know I was disabled until college.

Many adults in my life told me I had ADHD. They just said it made me hyper, and gave me attention issues… then kept saying the same positive things about me: Smart. Unique. Creative. Reads a lot. When I got my autism diagnosis, they started saying: Smart. Reads a lot. Very high-functioning. Uniquely aware [of the diagnosis]. When they spoke of things I struggled with – like attention issues, staying organized, being polite, and making the right words happen – it was not to acknowledge disability, only deficit. It was not to work with me or discuss ways other people could adapt. I needed to adapt to the world, except for some accommodations.

They tried to quantify my life into skills and deficits. They told me I was more aware than others – like those in the special education classrooms – despite those kids being the most accepting of me when I hung out in their classrooms. I learned my deficits outweighed other qualities. I learned that there was no one else at all like me. I learned that I was alone. Not knowing what the diagnosis meant affected the ability to find friends, worsened depressive episodes and anxiety, and increased social isolation.

In my younger years, I had been able to get by through extensive book reading, writing fiction, and other solo activities. As I aged, my differences became more apparent. I wondered why I couldn’t be like everyone else or have friends. I had about one close friend in my high school years – an online one who meant a great deal to me. We couldn’t meet up in person, which I wanted desperately.  I wouldn’t know anything else but isolation until college – and making two autistic friends, along with a couple of others who accepted me.

The diagnosis given to me answered the question why for why I worked the way I did. No one helped me understand how it made my brain and body work. No one explained that it is a disability with ups and downs and effects from society. No one aided me in accessing community and culture. The diagnosis did not simply hand me all the tools I needed for life, in of itself. Community, once I found it, did.

Much of the autistic community may exist online, but it is vital. It will give youth access to writings by other autistic people. It gives them access to people who have written or know about coping tools, self-advocacy, and policy issues. It gives autistic youth an autistic culture. Parents (and other adults interacting with autistic youth), please explain autism to autistic youth. Please tell them more than a diagnosis. Please help them find other autistic people. If you don’t know the answers to their questions about autism, ask autistic people. It will change their world at least as much as telling them the diagnosis.



Part Two (Upcoming): Tips and Ways to Teach about Community

an exploration of autistic mad pride: part one

Introduction:

exploring the possibilities of neurodiversity, mental health, and autistic mad pride intersections

Recently, I found an article on Medium talking about schizophrenia fitting into neurodiversity, which got me thinking about how mental health more broadly fits into neurodiversity.

There are a lot of people I know with mental health disabilities/[a person’s preferred terminology] who dislike the idea of categorizing mental health things as neurodivergence, who feel that claiming mental health stuff as neurodivergence by definition means claiming it as an intrinsic part of the self that can’t be separated from oneself- and thus can’t be recovered from.

Currently I’ve been trying to think about and sort out the various models of mental health. For instance, the recovery model as it was conceptualized and formed after the period of large-scale, long-term institutionalization talked in part about recovering from the effects of society.

Then a lot of what “recovery” means, as I’ve seen it discussed, not just recovering from society’s effects, but primarily recovering from the effects of the mental health disability. I do know people with mental health disabilities who support this idea of recovery insofar that it means that they experience a significant reduction of symptoms along with developing coping strategies for symptoms.

However, as a disclaimer, I am not in fact trying to tell people that they cannot want to recover – experience a significant reduction in symptoms etc. – from their mental health disabilities.

But I think the recovery narrative, if pushed onto us by others, is, if not harmful, not exactly beneficial, because then it is not a choice. And a lot of times that’s the only narrative people are given.

And then a lot of autistics have co-occurring mental health disabilities, as I’ve discussed in this AACC presentation (PDF) and in this blog post series (the transcript for the AACC presentation is here as a PDF). And the autistic rights movement is rooted in neurodiversity and neurodivergence as identity. 

Then the questions I have are, that I will address in blog posts to come:

  • Part Two: Should mental health disabilities be fit under the category of neurodivergence as identity? (I can’t answer this for everyone, but I can answer it for myself and the way I see it).  
  • Part Three: Why haven’t the mad pride, mental health rights, and autistic rights movements intersected nearly as much (to my knowledge)?

 

We need to name some modern practices as eugenics – and don’t

How this failure to name eugenics – and then condemn it as such – has resulted in a growing acceptance of renewed efforts to “better humankind”

An article on Germany’s renewed efforts to document Nazi-era medical experimentation and murders of disabled people came out recently without ever mentioning the word eugenics. Published on January 5, 2017, the American Association for the Advancement of Science’s Science Mag titled the piece “Germany to probe Nazi-era medical science.” The phrase “medical science” is too kind for murders rooted in a eugenics movement – and eugenics is not “medical science.”

I am pleased that Germany is doing a probe and that this is getting coverage in a science magazine with such detail, as eugenicists claimed scientific and medical evidence as their rationale. I am less so that they didn’t name eugenics. The article’s word choice got me thinking about eugenics in the past and modern eugenics. If you don’t name eugenics as such, it’s that much harder to recognize today.

Many people I know agree eugenics was a movement that happened in history, and name it in articles and other writing. But I have not seen as many people discussing eugenics practices happening in recent years and today. As a society – with some exceptions – we don’t call many actions eugenics or discuss the perils of eugenics practices occurring in them.

  • We don’t call it eugenics when prenatal testing in order to avoid having disabled children – particularly those with Down Syndrome – happens.
  • We don’t call it eugenics when disabled people receive the recommendation that they should not have a child because they have a disability.
  • We fail to discuss eugenics beliefs behind the removal of children from disabled parents on the basis that they are “unfit to parent” due to disability.
  • We don’t call it eugenics when many states still have sterilization laws on the books and when Buck v. Bell has never been overturned in its entirety.
  • We don’t call it eugenics when disabled people are still sterilized “for their own protection” in many countries, such as Australia. 
  • We don’t call it eugenics when discussions of “designer babies” that are “perfect” – meaning, to many, without any form of disability – occur.
  • We fail to discuss eugenics when talking about human genomics and gene-editing programs, such as CRISPR.

Yet these are rooted in eugenics, with the belief that disability is unacceptable and bad.

Joan Hume, a woman with a disability, wrote in 1995 about the “new eugenics,” prenatal testing, and having disabled children, “The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents…. With the emphasis on “perfect babies” the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad.”

And eugenics is, indeed, inextricably linked with the concept that disability is bad – regardless of whether the practices target non-disabled people or not. Eugenics tells people that disability and failure to conform to mainstream society’s expectations and rules are bad. Eugenics is ultimately rooted in  intertwining sets of bigotry: racism, sexism, classism, ableism, and more forms of oppression, using disability, “abnormality,” and “defects” to explain practices such as involuntary sterilization of any marginalized person.

The popular American eugenics movement of the Progressive Era past had eugenicists positing that intelligence and moral “defects” in the “feebleminded” people were passed down like Mendel’s peas generation by generation, using the growing field of genetics, the myth of the “feebleminded menace,”  and “fitter families” contests to make it plausible and acceptable to society. They twisted scientific concepts and used new scientific discoveries and theories of science to make it sound exciting to Progressive-era society – and they also capitalized on public fear and worry about poverty, race, immigration, and disability.

In many ways, it had legitimacy among many – eugenicists testified before Congress on immigration restrictions as “experts” in the years before and during World War II, many states had sterilization laws, and the Supreme Court affirmed a Virginia eugenics sterilization law 8-1 in 1927. In several ways, it did not. Some eugenicists’ careers in eugenics ended early due to the growing negative response from the public. Some prominent scientists decried eugenics as pseudoscience. And eugenicists in that era failed to see their ideas of sterilizing every “feebleminded” person fully implemented on a massive, national scale. 

Unlike the eugenics of the past, eugenics today – from what I’ve seen – is generally cloaked in scientific legitimacy, using real science like CRISPR and gene editing and genomics. Like the eugenics of the past, a lot of people still have fear and other negative, oppressive beliefs regarding poverty, race, immigration, disability, and more. Like the eugenics of the past, is is presented as exciting new scientific discoveries.  And that makes it just as terrifying, if not more.

(ETA: a good resource to follow is Genetics and Society, “a nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of human genetic and reproductive technologies and other emerging technologies.”)