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:
I just discovered this masters project by @KarlaMcLaren about autistic peoples' views of social skills programs. It's from seven years ago and in many ways ahead of it's time in the autism literature: https://t.co/oy8J5tYJzA
— Noah Sasson (@Noahsasson) April 26, 2021
Programs not focused on "their unique sensory & communicative needs, do not recognize participants’ existing social abilities & accomplishments, do not provide age-appropriate or gender-inclusive instruction, & do not consider or support autistic ways of learning & being social."
— Noah Sasson (@Noahsasson) April 26, 2021
I only stumbled upon it because it is cited in a paper by @kgillyn and @drstevenkapp. I looked it up and it's barely been cited at all, despite it's prescience.
— Noah Sasson (@Noahsasson) April 26, 2021
“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.
Thank you to the autistic people who answered this poll on whether social skills training improved their lives.
— Ann Memmott PgC MA (@AnnMemmott) April 26, 2021
Crunching the numbers to take out the 'just show results' people, we have
7% said yes
72% said no
The rest weren't sure.
So, nearly 3/4 said no improvement to life. https://t.co/gexfQgZHX6
Yet if we look at research, at books, at programmes, at specialist schools, at how autistic people are treated in care, there is an utter obsession with Making Us Do Social Skills The Nonautistic Way. "It will improve their lives", we're told.
— Ann Memmott PgC MA (@AnnMemmott) April 26, 2021
Rhubarb. (Generally).
Nonsense.
Making a different neurotype live an exhausting, inauthentic life, pretending to be someone we're not?
— Ann Memmott PgC MA (@AnnMemmott) April 26, 2021
Making us ignore our own, valid set of social skills (which are different to those of others?)
This was supposed to be a good thing?
It's not even logical, is it.
Ask autistic people what we want from our lives.
— Ann Memmott PgC MA (@AnnMemmott) April 26, 2021
Respect the answer.
Enable us to live our lives authentically.
Thank you.
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.
Did anyone ask the autistic children whether they liked curved walls?
— Ann Memmott PgC MA (@AnnMemmott) April 22, 2021
Would it surprise you to learn that, as far as I can see, no-one has ever asked autistic children of any level of support-needs whether they like curved walls.
Now, this may seem like me being pedantic, but/
OK, so they asked autistic adults?
— Ann Memmott PgC MA (@AnnMemmott) April 22, 2021
Autistic specialists in environmental assessment?
Autistic Architects?
Autistic interior designers?
<searches the paper>
Oh. No, they didn't.
Er, ok. Let's see what they found/
Did anyone ask the autistic children whether they liked curved walls?
— Ann Memmott PgC MA (@AnnMemmott) April 22, 2021
Would it surprise you to learn that, as far as I can see, no-one has ever asked autistic children of any level of support-needs whether they like curved walls.
Now, this may seem like me being pedantic, but/
It's an example of what we see All The Time.
— Ann Memmott PgC MA (@AnnMemmott) April 22, 2021
That no-one bothers to ask us.
Then they make up an alleged fact.
Then their alleged fact makes it into policy.
Then they tell us that we don't know anything, because we're not like the Children They Did Not Ask.
It's boggling stuff
Now I wouldn't mind so much, perhaps, but I'm a buildings specialist, on autism.
— Ann Memmott PgC MA (@AnnMemmott) April 22, 2021
And I'm autistic.
And I've spent two decades studying this topic.
And I have asked.
I'm also paid large sums of money to advise on buildings.
But, in the world of NTs, none of that matters/
As long as a nonautistic person invents a 'fact', that's all the proof there needs be.
— Ann Memmott PgC MA (@AnnMemmott) April 22, 2021
We need to change this, don't we.
Because this isn't logical. This isn't evidence-based. This is just plain silly, and it has to stop.
Thank you for reading.
A fellow late-diagnosed autistic summarizes the state of things well.
As a late diagnosed autistic person, the high volume of peer reviewed research papers that can only be properly described as utter nonsense, has been something of a revelation.
— Graham Mead (NeuroPleb) (@twillierod) April 27, 2021
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.
Previously,
- The Problem with Behaviorism
- The Meaninglessness of “Evidence-based”
- Behaviorism: Measuring the Surface, Badly
- Persuasion and Operant Conditioning: The Influence of B. F. Skinner in Big Tech and Ed-tech
- Behaviorist Ed-tech — Ed-tech from the 1940s
- Tech Ethics and the New Behaviorism
- Behaviorism, Compliance, and the Subversiveness of Autistic Pride
- A Credo for Support: Respecting Autonomy in a Society of Interdependence and Care
- Drop the B from PBS
- Neurodiversity in the Classroom
- Normal Sucks: Author Jonathan Mooney on How Schools Fail Kids with Learning Differences
- The Past Decade of Unethical and Misguided Ed-tech
- Post-truth, Open Society, and the Business of Behaviorism
- Titrating the Whelm: Perceptual Capacity and Autistic Burnout
- Dr. Gebru, NAUWU, and DEI
- Context, Framing, and NAUWU
- Google, Autism Speaks, and NAUWU
- Do Not Be the Oppressor: Unlocking the Power of Employee Resource Groups
- Image Work Diversity vs. The Reality of Me
- Self-determination Theory > Behaviorism
- Search Results for “behaviorism”
Leave a Reply to Autism Acceptance Month Is Nerve-racking and Traumatizing – Ryan BorenCancel reply