Tuesday, September 22, 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. (Start with MorénikeLydiaTimotheus, and Kerima. You can also support 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 bring back Asperger's Syndrome, which is autism rebranded by Lorna Wing?* Would Sarrett rather such divides 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. 

Also, authors writing articles on autism need to consult actually autistic people. This article presumes to speak for autistic people's needs. It also doesn't do much to help. Sarrett may think the article is helping “significantly autistic” people, as Sarrett would word 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. 

*I am American and use the DSM-V. I am aware that countries not using the DSM-V may still have Asperger's listed as a diagnosis. I back my statement that Asperger's is autism, no more or less. Lorna Wing went out of her way to create Asperger's as a diagnosis so she could convince parents to accept their children's dxes. Hans Asperger did not call any of the patients he saw as having Asperger's. He called their behaviors autistic. Source: Neurotribes by Steve Silberman. 


  1. I'd love to know whether Sarrett wants to go back to the days when most undiagnosed autistic kids just decided we weren't human because we had no other rational explanation for how much we were struggling and how badly we were misunderstood.

    I sure don't.

    1. I may comment on the original article with a link to this. Yeah, I'm kind of wondering, too.

    2. I decided I was human and everyone else wasn't. as I was the only humane one :p

      i was 6

  2. Thank you, Kit. io9 seems a bit behind on their comment moderation; they still haven't shared my comments from yesterday.

    1. I haven't left a comment yet. I may yet still.

  3. In the UK we still have Aspergers, it is clearly defined and not an issue.

    I am autistic where as my son has Aspergers.

    the main difference being my late delayed talking in early development.

    but i think the difference is a good thing

    x-rays and the colour blue are all light and on the same spectrum. but they can be clearly defined.

    The biggest issues are in my mind, the inherent race and sex stereotypes.

    My current partner scores highly on autism tests. as does my ex-wife. but they are finding it dificult to get accessed

    however autistic people need this ESPECIALLY women. for a simple reason

    Autistics are at risk of abuse both sexually, emotionally, financially and physically from others due to our difficulty in recognising people's true agendas. women are in a greater risk category to start with (though believe me autistic men are also)

    The media seem to forget this.

    1. You've brought up some points I want to talk about, but I haven't got the words yet. I'll reply given some time...

  4. Neurodivergent by birth...
    American by the Grace of God!