Monthly Archives: September 2015
Response to io9 article by Jennifer Sarrett
Recently io9 published an article by Jennifer Sarrett entitled “Is the Changing Definition of Autism Narrowing What We Think of as “Normal”?
The main premise of the article is that the DSM-V is too vague. According to Sarrett, this results in disparities in diagnoses among minority communities. Sarrett believes this will result in people being “pathologized” who would not have had a diagnosis before. Sarrett also states that this will stigmatize those who are “more significantly autistic.”
It is true that children of color are less likely to get a diagnosis of autism. But it is the implicit racial bias in the psychiatric system that sees autism as a white, male disability that I fault greatly. This bias will still result in diagnostic disparities. This is even if the DSM-V became less what Sarrett calls “subjective.” To blame it on the DSM-V for the most part is to deny the fact that racism is a core aspect of this.
Sarrett is partially-correct for stating some of the other reasons. This is that many families of color also don’t always have access to the same type of tools to get a diagnosis. This needs to change. We need to start listening to autistic people of color and their families. (You can start with Morénike, Lydia, Timotheus,and Kerima, and many more, including the contributors of this upcoming anthology by the Autism Women’s Network.
The second part of Sarrett’s argument is that “people who would not previously have had a diagnosis are now being pathologized.” This is only true if you buy into a pathology model. It is true if you believe autism is the bogeyman in the closet. It is true misdiagnosis exists. But that is a separate issue than autism being a spectrum. There are many different people and presentations of it. And I doubt anyone who is autistic – whether they get a formal diagnosis or not – is treated as “what we think of as normal.”
Would Sarrett rather such divides over autism and Asperger’s diagnoses occur in the autism community? The folding of everything into Autism Spectrum Disorder creates a way for everyone to get supports. Many people with an Asperger’s diagnosis would be routinely denied supports and services. The diagnostic differences were the age at which someone began speaking. This is not the best way to describe what someone needs supports for. I have my own problems with the Level 1, Level 2, and Level 3 aspects of the DSM-V. These seem to be high/low functioning labels separated into three different categories. Ironically, this is what Sarrett seems to be doing, just without the explicit labels — “less significant forms of autism” vs. “significantly autistic”.
Or would Sarrett rather just diagnose people in the original Kanner sense, and cut out a large portion of the population for services? Leave an entire population of people stranded not knowing why they do the things they do and knowing they’re different but not having a name for it, nor supports to help them.
There is another argument in Sarrett’s writing worth addressing. Sarrett believes that by giving supports to everyone, you take away from those who need it most. These are people Sarrett terms “significantly disabled.” But why would that mean you have to take away from someone else to give to someone else? Need is need. Most autistics who seem successful or semi-successful by neurotypical society’s standards probably would not have gotten there without accommodations and dare I say it – significant support (I am not saying the goal of all autistics should be to look successful by neurotypical standards and achieve ~normalcy~, either). I know I needed heavy doses of support all my life to make it through all my schooling and other personal areas of my life.”
Finally, Sarrett writes that when “Rates of people with less significant forms of autism will rise and become the autistic norm… people who are more significantly autistic appear super-disabled, and then become super-stigmatized.” Except that’s already the case. Autism Speaks and groups and people before them – Kanner, Bettelheim, and Rimland – have made sure of that. Considered a prognosis worse than death, then and now, autism remains the bogeyman in the closet for so many people.
Lastly, authors writing articles on autism need to consult autistic people. This article presumes to speak for autistic people’s needs, and doesn’t do much to help in that regard. Sarrett may think the article is helping “significantly autistic” people, as the article words it, but I would argue that it’s throwing all autistic people under the bus. It creates division and more fighting over who gets the supports when everyone should receive whatever they need.
Existing Autistic and Watching the Public Discourse on Autism
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that our voices were not needed,
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that Issy was violent,
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that Issy should have been institutionalized like so many mentally disabled people have been,
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that if she were Kelli Stapleton, maybe she would have considered killing her son, too:
The Autistic Self Advocacy Network is outraged that the Maryland prosecutor’s office has dropped all charges against a couple that imprisoned their autistic sons in a filthy basement with no furniture or electricity. When the prosecutor’s office declined to pursue charges, they joined a pattern of treating violence against people with disabilities as acceptable and excusable rather than worthy of zealous prosecution and condemnation. We are appalled that even in a case of such severe abuse, the lives of people with disabilities continue to be deemed less valuable than those of people without disabilities. …. On December 23, 2014, however, Montgomery County prosecutors announced that charges have been dropped. Since removal from the home, the autistic men have been placed in a residential facility. Their parents, who abused them, have visitation rights.6
Father picked her up and carried her to the car, the whole way praising her submission. “Good eye contact, Janie.”
What did Janie learn that day? I’ll give you a hint: it was not that people are more trusting of those who make good eye contact… Janie learned that adults can have whatever they want from her, even if it hurts… Janie learned that her body does not belong to her and that she has to give others access to it at any time, for any reason.7
-Withholding all rewards unless kids ask for it or earn it, including food, breaks, and affection.
-Not allowing any free time or only very small breaks in 5-hour/8-hour days (again, see this post by Unstrange Mind, which also details many other problems with ABA, including the goals meant for normalizing kids).
-Not recognizing motor apraxia, which may give the appearance an Autistic person does not understand a command, when in reality, they may not be able to get their body to obey them because they experience a disconnect between their mind and their body (again, see this post by Ido Kedar, this postby Amy Sequenzia, and this post at Emma’s Hope Book).
-Allowing behaviorists to have too much power (see this post by Real Social Skills).
-Using verbal prompts (“quiet hands,” “nice hands,” “hands down”) and physical prompts to prevent children from stimming (again, see this post by Julia Bascom).
-Using functioning labels to define a child’s abilities (see this post at Musings of an Aspie and this video by Amythest Schaber).
-Routinely using physical restraints as a solution for kids engaging in violent or destructive behaviors, instead of as an absolute last resort that is recognized as being harmful (see this post by Real Social Skills and this checklist for identifying sources of aggression at We Are Like Your Child).
-Not presuming the kids to be competent and, relatedly, not providing adequate means of communication (see this post at Emma’s Hope Book and this post by Ido Kedar).
Its teachings dictate we are broken.