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 http://autisticshs.blogspot.com/p/a-few-selected-autism-speaks-quotes.html, 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.

Autism

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: http://autisticadvocacy.org/wp-content/uploads/2014/03/ReformCAAFactSheet_r1.pdf.

The Cure and Treatment Research is Growing

• http://www.disabilityscoop.com/2015/08/05/funding-asd-trending-up/20536/

• http://www.upi.com/Health_News/2015/08/07/Researchers-show-how-single-genetic-mutation-can-cause-autism/1361438949040/

This helps no one who is currently alive.

This is the discourse and funding propagated by Autism Speaks.

Another example is here: http://clinicalnews.org/2015/07/28/autism-costs-estimated-to-reach-nearly-500-billion-potentially-1-trillion-by-2025/

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. http://www.thedailybeast.com/articles/2014/10/01/the-mommy-blogger-who-tried-to-kill-her-autistic-daughter-talks-to-dr-phil.html

2 Bob Wright, http://www.autismspeaks.org/advocacy/advocacy-news/autism-speaks-calls-swift-passage-and-enactment-combating-autism-reauthorizat

3 Susan Donaldson James and Cassandra Vinograd, “Jillian McCabe was ‘Overwhelmed’ Before Autistic Son’s Fatal Plunge,” NBC News. November 5, 2014. www.nbcnews.com/health/mental-health/jillian-mccabe-was-overwhelmed-autistic-sons-fatal-plunge-n241176

4 The Autistic Self Advocacy Network, “ASAN Condemns Maryland for Dropping Charges in Case of Autistic Men in Basement,” December 26, 2014. http://autisticadvocacy.org/2014/12/asan-condemns-maryland-for-dropping-charges-in-case-of-autistic-men-in-basement/

5 Dan Morse, “Coping with adult children’s autism, parents may face ‘least bad’ decisions,” Washington Post. July 26, 2014. http://www.washingtonpost.com/local/crime/2014/07/26/73e3cb4c-1414-11e4-9285-4243a40ddc97_story.html

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 https://unstrangemind.wordpress.com/2014/10/07/aba/

8 Julia Bascom, October 5, 2011, “Quiet Hands,” at Just Stimming (blog). Accessed at http://juststimming.wordpress.com/2011/10/05/quiet-hands/

9 Socially Anxious Advocate (blog), May 22, 2015, “Why I Left ABA,” accessed at https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/

10 Summary of video: https://www.autismspeaks.org/news/news-item/autism-every-day-film

11 Joseph A. Kras, Disability Studies Quarterly 30, no. 1 (2010). “The Ransom Notes Affair: When the Neurodiversity Movement Came of Age,” http://dsq-sds.org/article/view/1065/1254.

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, https://iacc.hhs.gov/apps/portfolio-analysis-web-tool/funders?fy=2010