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

Kelli Stapleton tried to murder her Autistic teenage daughter Issy in September 2013, by locking them both in a van with gas grills under the pretenses of camping. By the time she was talking to Dr. Phil from her jail cell, waiting to be sentenced in a plea deal for first degree child abuse instead of attempted murder, people wrote in comments on an article criticizing the lack of autistic representation on the Dr. Phil episode:
  • that our voices were not needed,
  • that Issy was violent,
  • that Issy should have been institutionalized like so many mentally disabled people have been,
  • that if she were Kelli Stapleton, maybe she would have considered killing her son, too:

[image description forthcoming] 1 The sad fact is that if you reported this parent, it is likely nothing would happen; after all, it is acceptable, in many people’s eyes, to consider getting rid of your disabled kid when it’s stressful. We are expensive, and stressful; Autistic people are explained as such by Autism Speaks co-founder Bob Wright:
Autism is a growing public health crisis in America today; it affects nearly 1% of our children and it demands an appropriate level of response from the federal government through the reauthorization and expansion of the Combating Autism Act… Thanks to the 2006 Combating Autism Act, we have made tremendous strides in federally-funded and directed research. However, the need for investment is greater than ever if we are to meaningfully address the scope of this enormous problem and the social and economic burdens it places on our nation.2

Thus you have the mainstream public educated as such about autism. You have news reports leaning in favor of parents; articles discuss the stress of the parent, the financials of the parent.

The Articles Talked About the Burden of Autism.

These articles of course came out when Jillian McCabe threw her six-year-old son, London McCabe, off a bridge in November 2014, an NBC article titled “Jillian McCabe was ‘Overwhelmed’ Before Autistic Son’s Fatal Plunge,” came out, discussing the burdens she was facing. It makes no mention in the headline that she threw him off the bridge to kill him. It justifies her reaction to his 2011 diagnosis of autism. The article goes on to quote a psychologist, Dee Shepherd-Look, “a psychology professor at California State University, Northridge, as saying, “quite frankly, I am surprised this doesn’t happen more often. These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated… That is one of the most difficult things for mothers,” followed by saying autistic children can be “rigid and oppositional.”3
Jillian McCabe murdered a six-year-old child.
Psychologists and the press excused her.

Dropping The Charges Against People Who Abuse Us

The Land twins are two autistic young men in Rockville, MD. Authorities discovered them “locked in an empty basement room that reeked of urine. The only light in the room did not work. The door was secured with a deadbolt from the outside. The one small window was not large enough for them to crawl through in case of emergency.”4 The ensuing Washington Post article excused their parents with the headline “Coping with adult children’s autism, parents may face ‘least bad’ decisions.”5

There is no least bad decision when locking people in filth. To compound matters, the Montgomery County prosecutor dropped charges. As the Autistic Self Advocacy Network statement reads:
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
On Applied Behavioral Analysis and Normalization

Another component of the cure culture which seeks to fix Autistic people is normalization therapies, most prominently ABA, or Applied Behavioral Analysis. It teaches compliance training, forcing an Autistic child to be obedient at all costs. This leads to a much higher rate of sexual abuse later in Autistic people's lives, because they learn that their body is not their own to say “no” with; as Sparrow Rose Jones wrote in a blog post about a girl she observed being forced to make eye contact:
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

ABA thus teaches Autistic children that they cannot say no, and that their neurology is wrong and shameful. A prime component behind ABA has also been the moniker and metaphor “Quiet Hands,” in which is the forced quelling of Autistic stimming, or self-stimulatory behaviors such as hand-flapping and spinning. It is a natural expression of an Autistic person, but “Quiet Hands” immediately strives to to shut all that down. As Julia Bascom, autistic activist, writes in a blog post: “Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words,” and “When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.”8 One former ABA therapist even documents why they left:
Compliance training and harmful therapy goals are two of the biggest problems with many forms of ABA, but there are plenty of other concerns that Autistic people and their allies have raised about the ABA they experienced. This is by no means an exhaustive list, but some further concerns include:

-Using explicit aversives to actively discourage unacceptable behaviors (seethis post by Ink and Daggers).
-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).
Of these things, the ABA I was part of included all but the first.9

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

“But I remember that was a very scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools, and it is only because of Lauren, the fact that I have another child, that I probably didn’t do it."10 You may think that this is some random parent of an autistic child, but this, in fact, one of the executive directors of Autism Speaks, Alison Singer. This is from their video “Autism Every Day.” A link to the summary of the video may be found in the footnote. It premiered at the Sundance Film Festival in 2007, to a wide audience.

More select quotes from Autism Speaks can be found at, with sources for each one. It includes quotes by state representatives who have been influenced by Autism Speaks as well.

The Ransom Notes Campaign (2007)

The Ransom Notes Campaign occurred in 2007. The NYU Child Center decided to place “ransom notes” from autism and Asperger's syndrome on billboards everywhere.

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 "Ransom Notes" campaign was based on the medical model of disability. The ads depicted childhood psychiatric conditions as problems that need to be fixed and children with these conditions as abnormal outcasts from society. Their — or, rather, their parents' — -only hope is to pay someone money to get them liberated from their disorder and returned to normal society. From a social constructionist standpoint, NYU CSC's so-called "public service" campaign constituted yet another huge disservice to people with childhood psychiatric disorders, such as autism, Asperger syndrome, depression, and ADHD.11

The medical model is still a prevailing view society has of autism. Steven Kapp notes noted “The medical model aspires toward normalization, symptom reduction, and elimination of conditions identified based on deficits said to cause functional impairment in major life activities.”12 This is a common goal of autism therapies.

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

The Combating Autism Act, as it was known until 2014, provides federal funding for research into autism. This is the federal standpoint on autism. And it is not a good one. One billion dollars has been spent since 2008. Only 2.4% of it went toward services for autistic people and their families, and only 1.5% of it went toward research on autistic adults.13 More information can be found here:

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.

1 Comments on article by Elizabeth Picciuto, “The Mommy Blogger Who Tried to Kill Her Autistic Daughter Talks to Dr. Phil,” The Daily Beast. October 1, 2014. Accessed October-November 2014.
3 Susan Donaldson James and Cassandra Vinograd, “Jillian McCabe was ‘Overwhelmed’ Before Autistic Son’s Fatal Plunge,” NBC News. November 5, 2014.
4 The Autistic Self Advocacy Network, “ASAN Condemns Maryland for Dropping Charges in Case of Autistic Men in Basement,” December 26, 2014.
5 Dan Morse, “Coping with adult children’s autism, parents may face ‘least bad’ decisions,” Washington Post. July 26, 2014.
6 The Autistic Self Advocacy Network, “ASAN Condemns Maryland for Dropping Charges in Case of Autistic Men in Basement.”
7 Sparrow Rose Jones, October 7, 2014, “ABA.” At Unstrange Mind (blog), accessed October-November 2014 at
8 Julia Bascom, October 5, 2011, “Quiet Hands,” at Just Stimming (blog). Accessed at
9 Socially Anxious Advocate (blog), May 22, 2015, “Why I Left ABA,” accessed at
11 Joseph A. Kras, Disability Studies Quarterly 30, no. 1 (2010). “The Ransom Notes Affair: When the Neurodiversity Movement Came of Age,”
12 Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2012, April 30). Deficit, Difference, or Both? Autism and Neurodiversity. Developmental Psychology. Advance online publication. doi: 10.1037/a0028353

13 IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool, Funder listing,