Autism Acceptance Month Is Nerve-racking and Traumatizing

We’re enduring the worst Autism Acceptance Month ever as society rallies around the common cause of our abuse, control, and extinction, complete with celebrity extravaganzas. We can’t be online at all and not be faced with eugenics and behaviorism. It’s traumatizing.

My acceptance month blogging:

A passage to ponder:

We are marginalized canaries in a social coalmine and Rawlsian barometers of society’s morality. It is deeply subversive to live proudly despite being living embodiments of our culture’s long standing ethical failings.

Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.

If we were not threatening to the social order in some way, there would not be therapies designed to control how we move our bodies and communicate.

One of the best things that could come out of this is a wake-up call, because concepts like eugenics reassert themselves in every historical era-whether it’s Nazis talking about “life unworthy of life,” geneticists in Iceland talking about “eradicating” Down syndrome through selective abortion, a presidential candidate mocking a disabled reporter from the podium while bragging about his “good genes,” or autism charities framing autism as an economic burden on society. Resisting institutionalized violence requires perpetual vigilance.

Source: THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies

And community tweets to explore:

Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction

Social skills training programs for autistic youths and adults exist in nearly every school district and community; these programs focus on bringing autistic people into synchronization with developmental, linguistic, and social norms. However, these norms have not been critically evaluated, and autistic people themselves have not been surveyed about their experiences of, responses to, or opinions about these programs. This study sought direct input from autistic people about these programs.

Nothing About Us Without Us (NAUWU), an anonymous cross-sectional survey study, was posted online from 18 February, 2014 to 4 April, 2014, and was open to adults (18 years or older) who were formally diagnosed or self-diagnosed on the Autism Spectrum.

Major findings from the NAUWU study are that most of the 91 autism-specific social skills programs studied are not focused on individuals or their unique sensory and communicative needs, do not recognize participants’ existing social abilities and accomplishments, do not provide age-appropriate or gender-inclusive instruction, and do not consider or support autistic ways of learning and being social.

Source: Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction

Via autism researcher Noah Sasson:

“Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction”

I love that title. This paper from 2014 really is prescient. Social skills programs are detached from our needs. Recent studies and polls reinforce what autistic people, and this paper, have been saying.

A friend working on experiments related to autism representation lamented the state of the field in recent correspondence.

At this point I’ve read about 80 studies related to this, and I’m so grossed out. Also furious. EVERYTHING gets done from the clinician/special ed educator perspective, with an occasional entry that includes the parental perspective for comparison. NONE of the studies include the perspective of autistic people.

Similarly, the author of “Interrogating Normal”:

In 2012, I entered the education program at Sonoma State University in order to search through the literature in education and the social sciences, and I hoped to bring together research on the enforcement of normality that would describe and illuminate the everyday dehumanization autistic people face. This dehumanization is not restricted to the exclusion and bullying that is a reliable feature of the social lives of autistic people; it is also a regular feature in clinical settings, in academic research, in seemingly authoritative books about autistic people, in media reports, in education, in social services, in fundraising narratives, and in social skills training for autistic youths and adults. This dehumanization is so widespread that it seems to be an intrinsic aspect of normality – an accepted and acceptable way to view the bodies, minds, and lives of autistic people, or of any people who consistently breach the unwritten rules of normality.

Source: Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction

Lit reviews through the ignorant and ableist morass of autism studies are gut-punching for autistic researchers. I share the sentiments of autistic autism researcher Kieran Rose.

Perspectives that lack knowledge are often dangerously misinformed.

You would think that would be a pretty obvious statement and perhaps you might think that there are certain contexts where that should be a mantra imprinted in the brains of everyone involved.

Naively, when I was much younger, less knowledgeable about myself and much less worldly-wise, I used to think that Autism Research would be one of those contexts.

How wrong I was and how terrifying it is when I look around and see so many Autistic people invested in Autism research like it’s written in the holy scripture of [insert religion here].

Autism research is incredibly flawed in an enormous number of ways. One example of how, is the fact that the sum total of all knowledge of Autism in academia is based on the work of two incredibly flawed men, both with incredibly flawed ideas and practice from the 1940s. Everything we know professionally and societally about Autism is underpinned by their work. As I’ve said so many times in talks and trainings the whole of Autism research is built on a foundation of sand.

Why is it a foundation of sand? Well, right from day one the narrative of Autism research has been this:

  • Expert’ looks at Autistic person (usually child; usually white child; usually white boy child; usually white boy child that presents in a particular way).
  • ‘Expert’ takes notes.
  • ‘Expert’ forms opinion.
  • ‘Expert’ writes it up.
  • Another ‘expert’ nods wisely.
  • ‘Expert’ publishes.
  • ‘Experts’ applaud ‘Experts’.
  • Whole world believes ‘Expert’.
  • Services are developed around ‘Expert’ knowledge.

Source: Autistic Masking: Kieran Rose a new Academic Paper

This is a depressingly regular occurrence.

A fellow late-diagnosed autistic summarizes the state of things well.

The tyranny of the norm, thoroughly institutionalized and instrumented against us:

This ableism follows a long tradition of devaluation of disabled people in regard to their deviations from the norm. As educator Thomas Hehir (2002) writes,

ableism uncritically asserts that it is better for a child to walk than roll, speak than sign, read print than Braille, spell independently that use spell-check, and hang out with non- disabled kids as opposed to other disabled kids, etc. In short, in the eyes of many educators and society, it is preferable for disabled students to do things in the same manner as nondisabled kids (p. 3).

In nearly all media accounts, and throughout much of the research literature, autistic functioning is portrayed in thoroughly ableist terms as a medicalized deficit that requires extensive correction. For many autistic toddlers and young children, the requirement to do things in the same manner as non-autistic kids often means that months and years are spent in some form of intensive behavioral training meant specifically to make them appear less autistic. Educator Lennard Davis (2010) calls the ableist enforcement of normality onto the bodies and minds of disabled people “the tyranny of the norm,” (p. 6) and states that “the ‘problem’ is not the person with disabilities; the problem is the way that normalcy is constructed to create the ‘problem’ of the disabled person” (p. 3).

This problem-focused and medicalized approach to autism, which is devoid of autistic voices and autistic agency, leads to treatments, therapies, and educational approaches that do not respect the humanity, autonomy, or dignity of autistic people – and this is especially true for many of the treatments that are focused on autistic toddlers and young children.

Source: Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction

Yes.

To get off this foundation of sand, listen to us, respect NAUWU, and reframe away from the tyranny of the norm.

understanding the perspectives and experiences of autistic children and adults in particular was essential. Time and again I found that issues aired say, by teachers, would be completely reframed when the autistic adults discussed the same points.

Source: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

Previously,

A Credo for Support: Respecting Autonomy in a Society of Interdependence and Care

Do Not try to modify my behaviour.

Be still & listen. What you define as inappropriate

may be my attempt to communicate with you in the only way I can.

Do Not see me as your client. I am your fellow citizen.

See me as your neighbour. Remember, none of us can be self-sufficient.

Do Not try to control me. I have a right to my power as a person. What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.

Do Not work on me. Work with me.

Source: A Credo for Support

Via: Autism and Behaviorism – Alfie Kohn

This credo is a beautiful recipe for respecting autonomy in a framework of interdependence and care. I’m going to share it with the educators and caregivers that work with our family.

The late Herb Lovett used to say that there are only two problems with “special education” in America: It’s not special and it sure as hell isn’t education. The field continues to be marinated in behaviorist assumptions and practices despite the fact that numerous resources for teachers, therapists, and parents offer alternatives to behavior control. These alternatives are based on a commitment to care and to understand. By “care,” I mean that our relationship with the child is what matters most. He or she is not a passive object to be manipulated but a subject, a center of experience, a person with agency, with needs and rights. And by “understand,” I mean that we have an obligation to look beneath the behavior, in part by imaginatively trying to adopt that person’s point of view, attempting to understand the whys rather than just tabulating the frequency of the whats. As Norm Kunc and Emma Van der Klift urged us in their Credo for Support: “Be still and listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can….[or] the only way I can exert some control over my life….Do not work on me. Work with me.”

Source: Autism and Behaviorism – Alfie Kohn

Previously,