Thursday, September 24, 2015

Problems with Lorna Wing

Problems with Lorna Wing

I have personal problems as well as general problems with Lorna Wing.

Lorna Wing created Asperger's syndrome as an interesting new syndrome to try and get people to accept their kids needed at least some services without the stigma of an autism label. Wing played into the binary that autistic people must either be high or low functioning, a binary I reject.

When I was diagnosed in 2007, I was never never told it was a disability because high functioning and quirky and depressed are all your problems! Or lack of problems. You suck with people, but everything else is fine! Except you're depressed, but you're a teenager, of course! Everything was downplayed.

I now call myself autistic. Under the DSM-IV, I would have gotten an autism diagnosis anyway at the age of two or three. But I was 14 when I was diagnosed.

Hans Asperger never called his patients as having Asperger's syndrome. He called their behaviors autistic. He saw a multitude of patients, but up-played all of them to save them from Nazi Germany. It was Lorna Wing who found his works and decided to create Asperger's as a distinction that has had consequences. It is what has enabled organizations to write many of us off as “oh, those high-functioning aspies are at it again saying we shouldn't cure that terrible disease autism!” It is what has enabled people to write individuals with an Asperger's diagnosis off as geniuses needing no services. It has enabled people to say, upon the folding of Asperger's into autism spectrum disorders in the DSM-V, that we're pathologizing normal people and robbing “significantly autistic” people of services. (The link is my response to the article saying that).

Lorna Wing could have told the truth about Kanner creating diagnostic restrictions without evidence. About Bettelheim and Rimland creating interpretations of autistic people without evidence. Instead she created Asperger's, and with it a divide that seems very hard to reconcile. 

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. 

Sunday, September 20, 2015

Existing Autistic and Watching the Public Discourse on Autism

Existing Autistic and Watching Public Discourse on Autism 
(in the United States)

On Our Abuse and Murder

Issy Stapleton: Blaming the Victim

  • that our voices were not needed,
  • that Issy was violent,



The Articles Talked About the Burden of Autism.

Jillian McCabe murdered a six-year-old child.
Psychologists and the press excused her.

Dropping The Charges Against People Who Abuse Us


On Applied Behavioral Analysis and Normalization



-Allowing behaviorists to have too much power (see 
this post by Real Social Skills).
this post by Julia Bascom).
-Using functioning labels to define a child’s abilities (see 

ABA is, terrifyingly, regarded as the intervention for autism.

Its teachings dictate we are broken.

On Cure and Prevention

Autism Speaks: Calling Us Burdens since 2005



The Ransom Notes Campaign (2007)


We have your son.
We will make sure he will
not be able to care for
himself or interact socially
as long as he lives.
This is only the beginning.

Asperger's Syndrome (Cripchick, 2007)
We have your son. We are destroying his ability for
social interaction and driving him into a life of complete isolation.
It's up to you now.

Joseph A. Kras notes in his article that



The Combating Autism Act (Now Autism C.A.R.E.S. Act)


The Cure and Treatment Research is Growing

This helps no one who is currently alive.

This is the discourse and funding propagated by Autism Speaks.

