This post was copied from my Facebook. It was originally written in 2021, but will be updated and iterated as new evidence comes to light, or for style, or for any other reason.
29 March — 4 April is World Autism Awareness Week. April is Autism Acceptance Month.
Approximately 1 in 40 people are autistic (Mozes, 2018). That’s about
- 64,000 people in Brisbane (population of the Hills District plus Albany Creek, Brendale, Bridgeman Downs, Bunya, Eatons Hill and McDowall)
- 129,600 Queenslanders (fewer people than Toowoomba, more than Mackay — if we were a city, we would be the 7th most populous city in Queensland).
- 644,100 Australians (fewer people than the Gold Coast—Tweed Heads area; more people than Newcastle, NSW — if we were a city, we would be the 7th most populous city in Australia).
- 196.4 million people worldwide (fewer people than Nigeria, more than Bangladesh — if we were a country, we would be the 8th largest in the world, comfortably outnumbering Russia, Mexico, Japan, Germany, France, the UK, Italy, the Republic of Korea, and Spain, among others).
Here are some things I think the community would like people to be aware of.
First: The opposite of “autistic” isn’t “normal”.
The term that strictly means “not autistic” is “allistic”. The longer-used, better-known term is “neurotypical”; however, this is actually the opposite of “neurodivergent,” and the neurotypical—neurodivergent axis is wider than autism alone; for example, people with bipolar disorder are neurodivergent.
Second: Please use IFL, not PFL.
When talking about people and their identities, identity-first language (IFL) places the identity first in the sentence: “an autistic person.” Person-first language (PFL) places the person first in the sentence: “a person with autism.” Allistic people tend to prefer PFL because many allistic people perceive ‘autistic’ as being an inherently negative word.Many autistic people don’t share that view, however, and feel that saying “a person with autism” is like saying “a person with tallness”. While identity-only language (“an autist[ic]”) is still considered offensive when used by people outside the community, just like e.g. “the gays” or “a transgender,” the autistic community in general tends to prefer IFL to PFL; “an autistic person,” not “a person with autism.” (Brown, 2011)
Third: Asperger syndrome doesn’t exist any more.
The primary reference for psychiatric diagnoses is the American Psychological Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM). When the fifth edition (the DSM-5) was released in 2013, Asperger’s syndrome was abolished and folded into autism spectrum disorder.
There are a couple of reasons that Asperger is no longer a diagnosis: it’s an early diagnostic construct that doesn’t necessarily keep up with the modern understanding of autism (Szatmari, 2000; Sanders, 2009), and it’s not clear that there’s much benefit distinguishing it from other autism diagnoses such as PDD-NOS (Klin & Volkmar, 2003).
There’s also debate over whether it’s appropriate to have a condition named after Johann “Hans” Asperger. He didn’t come up with the condition himself; it was described and formalised by Lorna Wing in 1976 (Guiding Pathways, 2018), based on the work of Asperger, who by then had passed away. In addition, Asperger syndrome as it was understood in the modern day didn’t have all that much to do with Asperger’s original work (Hippler & Klicpera, 2003).
More worryingly, Professor Asperger voluntarily cooperated with the Nazi client government in Austria; he was a member of the Austrian fascist party, the Fatherland Front, he joined them in openly supporting the Nazis’ racist policies (Czech, 2018), and he knowingly allowed his patients to be subjected to unethical and inhumane experimentation followed by involuntary euthanasia (Baron-Cohen, 2018). Many autistic people questioned the necessity of naming a condition after such a man.
Fourth: The leading therapy for autism, applied behaviour analysis, is ineffective and unethical.
For some children it definitely does not work (Howlin et al., 2009), and there is, in fact, generally no high-quality evidence that it works at all (Matson, 2005; Rao et al., 2007; Reichow et al., 2018).
There are also ethical concerns. ABA includes the use of “aversives” such as electric shocks, slapping and shouting (Løvaas, 1987). This is a carry-over from the practice of involuntary “conversion therapy” of queer and transgender individuals, which is now illegal in a number of developed countries and jurisdictions, including Queensland (Remington, 2020). The creator of ABA was also a co-creator of conversion therapy (Rekers & Løvaas, 1974), which in the case of the study cited led to the death of the subject (Bronstein & Joseph, 2011).
It has been claimed that use of aversives has reduced over time (Spreat, 2012), but as of 2014, experts in ABA were still describing ABA provider training as including the “principles of punishment,” including electric shocks, which were not banned until 2020 (“FDA takes rare step,” 2020). Even without considering aversives, the stated end goal of ABA is to create an autistic child who is “indistinguishable from their peers” (Therapist Neurodiversity Collective, 2019), placing all the onus on the child to become “normal,” when their peers are equally capable of undertaking the arguably far easier task of simply accepting them as they are (DeVita-Raeburn, 2016).
Fifth: Autism Speaks is a hate group.
Autism Speaks is the largest autism advocacy organisation in the United States, known for, e.g., creating the popular blue puzzle piece symbol and the Light It Up Blue Campaign. However, dozens of other disability advocacy organisations have condemned it (Ne’eman, 2009). There are a number of reasons this is the case:
Of the revenue it receives, Autism Speaks spends less on its actual work and more on executive salaries than other comparable organisations (Podkul, 2014).
Autism Speaks is responsible for the creation of the 2006 film Autism Every Day, which portrayed autistic people primarily as tragic burdens on their parents (“An autistic speaks,” 2007), used deceptive and manipulative framing in order to do so (Stanton, 2006), and treated autistic children as responsible for persistent murderous and suicidal urges experienced by their parents; those urges were framed as reasonable, which may have led to the death of at least one child in the week after the film’s release (Perry, 2014).
Autism Speaks has a record of taking legal action to suppress comment by autistic people who disagree with it (Biever, 2008).
Autism Speaks systematically excludes autistic people from its board of directors (Baronets, 2017).
The autistic community in general tends to support other advocacy organisations, the most prominent of which is the Autistic Self-Advocacy Network (ASAN). In addition, the blue puzzle piece of Autism Speaks has acquired a negative connotation; ASAN and most others prefer the “neurodiverse community” rainbow infinity symbol.
Sixth: The “empathy gap” is two-way.
The legend is that autistic people generally don’t understand or care about the feelings of others. However, this isn’t the case; on the contrary, the weight of scientific evidence is that autistic people are *more* empathetic than their allistic counterparts (Smith, 2009). There’s an intuitive way to test this: ask an autistic friend if they enjoy cringe comedy.
Autistic people’s ability to conform is heightened further by the fact that we have to do so in order to survive. This is further substantiated by the fact that autistic people raised as girls, who are subject to gender-specific increased pressure to conform, are much less likely to be diagnosed with autism than their male counterparts precisely because of their ability to perform in accordance with societal expectations (Bazelon, 2007).
In addition, repeated evidence has shown that at least part of the communication problem is that allistic people do not instinctively understand, and aren’t under any pressure to understand, how autistic people think or feel (Sheppard et al., 2015; Heasman & Gillespie, 2017; Milton, 2018).This is further substantiated by studies into ABA, as previously mentioned; by and large, the cases where ABA is reported to “work” are cases in which the parent has also actively undergone training to accept their child’s behaviours and meet them where they’re at, rather than placing the full responsibility on the child to become “normal” (Sofronoff et al., 2004).
To summarise, while there is relatively little scientific evidence that autistic people don’t understand allistic people, there is plenty of evidence for the other way around.
Here are the key takeaways:
- Non-autistic people are “allistic,” not “normal.”
- It’s “autistic people,” not “people with autism.”
- Asperger syndrome is dead and Asperger was a Nazi.
- ABA is conversion therapy and is unethical.
- Autism Speaks doesn’t care about autistic people.
- Autistic people have empathy; allistic people need to, too.
An autistic speaks about Autism Speaks (2007, May 20). Daily Kos. Retrieved 2 April 2021.
Baron-Cohen, S. (2018, May 8). The truth about Hans Asperger’s Nazi collusion. Nature, 557, 305-306. doi:10.1038/d41586-018-05112-1. Retrieved 2 April 2021.
Baronets, A. (2017, August 26). Why I boycott Autism Speaks, and you should too. Medium. Retrieved 2 April 2021.
Bazelon, E. (2007, August 5). What autistic girls are made of. New York Times Magazine. Retrieved 2 April 2021.
Biever, C. (2008, January 30). Voices of autism ‘silenced’ by charity. NewScientist. Retrieved 2 April 2021.
Bronstein, S., & Joseph, J. (2011, June 10). Therapy to change ‘feminine’ boy created a troubled man, family says. CNN. Retrieved 2 April 2021.
Brown, L.X.Z. (2011, August 4). The significance of semantics: Person-first language — why it matters. Autistic Hoya. Retrieved 2 April 2021.
Czech, H. (2018, April 19). Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism, 9, 29. doi:10.1186/s13229-018-0208-6. Retrieved 2 April 2021.
DeVita-Raeburn, E. (2016, August 10). The controversy over autism’s most common therapy. Spectrum News. Retrieved 2 April 2021.
FDA takes rare step to ban electrical stimulation devices for self-injurious or aggressive behaviour (2020, March 4). US Food and Drug Administration. Retrieved 2 April 2021.
Guiding Pathways (2018, January 24). What is Asperger’s syndrome. Retrieved 2 April 2021.
Heasman, B., & Gillespie, A. (2017, July 7). Perspective-taking is two-sided: Misunderstandings between people with Asperger’s syndrome and their family members. Autism, 22(6), 740-750. doi:10.1177/1362361317708287. Retrieved 2 April 2021.
Hippler, K., & Klicpera, C. (2003, February 28). A retrospective analysis of the clinical case records of ‘autistic psychopaths’ diagnosed by Hans Asperger and his team at the University Children’s Hospital, Vienna. Philosophical Transactions of the Royal Society B, 358(1430), 291-301. doi:10.1098/rstb.2002.1197. Retrieved 2 April 2021.
Howlin, P., Magiati, I., Charman, T., & MacLean, W.E. (2009, January 1). Systematic review of early intensive behavioral interventions for children with autism. American Journal of Intellectual and Developmental Disorders, 114(1), 23-41. doi:10.1352/2009.114:23-41. Retrieved 2 April 2021.
Klin, A., & Volkmar, F.R. (2003, January). Asperger syndrome: diagnosis and external validity. Child and Adolescent Psychiatric Clinics of North America, 12(1), 1-13. doi:10.1016/S1056-4993(02)00052-4. Retrieved 2 April 2021.
Løvaas, O.I. (1987, February). Behavioural treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3-9. doi:10.1037//0022-006x.55.1.3. Retrieved 2 April 2021.
Matson, J.L. (2007, March—April). Determining treatment outcome in early intervention programs for autism spectrum disorders: A critical analysis of measurement issues in learning based interventions. Research in Developmental Disabilities, 28(2), 207-218. doi:10.1016/j.ridd.2005.07.006. Retrieved 2 April 2021.
Milton, D. (2018, March 2). The double empathy problem. National Autistic Society. Retrieved 2 April 2021.
Mozes, A. (2018, November 26). Report: Autism rate rises to 1 in 40 children. WebMD. Retrieved 2 April 2021.
Ne’eman, A. (2009, October 7). Disability community condemns Autism Speaks. Autistic Self Advocacy Network. Retrieved 2 April 2021.
Perry, D.M. (2014, November 10). Why London McCabe’s death matters. CNN. Retrieved 2 April 2021.
Podkul, A. (2014, June 17). Understanding the puzzle of Autism Speaks. Philanthropy Daily. Retrieved 2 April 2021.
Rao, P.A., Beidel, D.C., & Murray, M.J. (2007, July 20). Social skills interventions for children with Asperger’s syndrome or high-functioning autism: A review and recommendations. Journal of Autism and Developmental Disorders, 38, 353-361. doi:10.1007/s10803-007-0402-4. Retrieved 2 April 2021.
Reichow, B., Hume, K., Barton, E.E., & Boyd, B.A. (2018, May 9). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews, 5, CD009260. doi:10.1002/14651858.CD009260.pub3. Retrieved 2 April 2021.
Rekers, G.A., & Løvaas, O.I. (1974, Summer). Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 7(2), 173-190. doi:10.1901/jaba.1974.7-173. Retrieved 2 April 2021.
Remington, C. (2020, October 14). Conversion therapy banned in Queensland. HealthLegal. Retrieved 2 April 2021.
Sanders, J.L. (2009, June 23). Qualitative or quantitative differences between Asperger’s disorder and autism? Historical considerations. Journal of Autism and Developmental Disorders, 39, 1560. doi:10.1007/s10803-009-0798-0. Retrieved 2 April 2021.
Sheppard, E., Pillai, D., Wong, G.T.L., Ropar, D., & Mitchell, P. (2015, November 24). How easy is it to read the minds of people with autism spectrum disorder?. Journal of Autism and Developmental Disorders, 46, 1247-1254. doi:10.1007/s10803-015-2662-8. Retrieved 2 April 2021.
Smith, A. (2009, July 9). Emotional empathy in autism spectrum conditions: Weak, intact, or heightened?. Journal of Autism and Developmental Disorders, 39, 1747. doi:10.1007/s10803-009-0799-z. Retrieved 2 April 2021.
Sofronoff, K., Leslie, A., & Brown, W. (2004, September 1). Parent management training and Asperger syndrome: A randomized controlled trial to evaluate a parent based intervention. Autism, 8(3), 301-317. doi:10.1177/1362361304045215. Retrieved 2 April 2021.
Spreat, S. (2012, November). Section 2 — Assessing and treating children with autism spectrum disorders: Chapter 10 — Behavioural treatments for children with ASDs. In M. Reber (Ed.), The autism spectrum: Scientific foundations and treatment. Cambridge University Press. doi:10.1017/CBO9780511978616.011. Retrieved 2 April 2021.
Stanton, M. (2006, August 30). Autism Every Day — a late response. Action For Autism. Retrieved 2 April 2021.
Szatmari, P. (2000, October 1). The classification of autism, Asperger’s syndrome, and pervasive developmental disorder. Canadian Journal of Psychiatry, 45(8), 731-738. doi:10.1177/070674370004500806. Retrieved 2 April 2021.
Therapist Neurodiversity Collective (2019). Applied behavior analysis (ABA). Retrieved 2 April 2021.
One response to “On Autism Acceptance Month”
Reblogged this on Autism Candles.