Sunday, February 18, 2007

Autism advocates do not take autism seriously

Autism advocates trivialize autism. They do not take autism seriously. For example, compare autism advocacy to advocacy in other disability areas. Here is the Canadian Down Syndrome Society, defining Down syndrome:

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada.

Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention.

Autism, like Down syndrome, is a neurodevelopmental disability. According to autism advocates, the CDSS has fallen to the siren song of DS. The failure of the CDSS to identify DS as a terminal disease and blight on society, and their failure to deny the humanity of DS people, is a destructive and deluded squandering of the lives and futures of DS children.

In the world outside of autism advocacy, CDSS takes DS seriously, and therefore considers that services for DS people should be asked for accurately, ethically, and respectfully.

I did not get involved in autism advocacy issues by choice. Autistics in Canada live daily the consequences of autism advocacy, and those consequences include being put in danger.

Having lived the consequences of autism advocacy, I wondered why autism advocates were unwilling or unable make their demands for services, whatever those services may be, accurately (with respect to the existing science), ethically, and respectfully. I also wondered why autism advocates demanded low or no standards of science and ethics for autistics, as opposed to the high standards that automatically protect and benefit themselves.

A possible, evidence-based answer to these questions is that autism advocates don't take autism seriously. They have not bothered with the hard work of slogging through primary sources, of critical thinking, of the comprehensive and impartial (in every sense) gathering of information that is the necessary foundation for ethical decisions. Autistics are just too appalling and blighted and doomed. We aren't even human. We're not worth the bother--the hassle of seriously applying recognized standards of science and ethics.

Instead, autism advocates equate autism with terminal cancer. They have wished their child had cancer instead of autism (also see this). And they have said that autism is worse than cancer because autism does not kill us. This autism advocacy staple has the purpose of spreading dread and horror of autism, of denying the worth of autistic lives, of informing Canadians that it is better to die painfully of cancer than to be autistic and alive.

Promoting autism as a degenerative disease process is also anti-scientific and unlikely to result in research leading to genuine help for autistic people. Similarly, models of autism premised on autistic brains being damaged versions of non-autistic brains have comprehensively failed (that includes Laurent Mottron's "agnosia" model). No deficit-based account of autism has (after 64 years of research) achieved any kind of consensus in the science, possibly because deficit-based accounts have so far made remarkably poor predictions.

Autism advocates consider peer-reviewed papers reporting autistic abilities (found either intentionally or accidentally) to be romanticized and dangerous nonsense, misleading and uninformative. All findings in autism research should therefore (according to autism advocates) be interpreted as deficits or not interpreted--or reported--at all. Researchers who find and investigate autistic abilities should not be funded and their foolish and dangerous work should not be published or discussed or for that matter, allowed.

For example, if peer-reviewed research shows that young autistic children--those who would popularly be considered "severely autistic", "non-verbal" and "low-functioning"--communicate competently but are persistently ignored by their typical parents (Keen, 2005) and teachers (Keen et al., 2005), then this science has surrendered to the deadly siren song of autism and must be discarded.

This is even though, or rather, especially because it was demonstrated that these very young autistic children detect when their communication has failed, and make multiple efforts to repair this failure, including by using strategies considered too sophisticated for their presumed developmental level. Also (it only gets worse), earlier attempts to communicate by these autistic children were not problematic. It was only their later efforts, after earlier attempts had been ignored and the children were repeatedly forced to effortfully create repair strategies, that the children's attempts to communicate became problematic.

To avoid romanticizing autism and squandering the lives and futures of children, autism advocates have rejected this obviously unacceptable research, and instead have forcefully promoted autistics as being non-communicative and non-responsive. This advocacy has been so successful that autistics are described this way in the House of Commons. The full success of autism advocacy can also be seen when autistics are described in the House of Commons as "violent" and "self-destructive".

Autism advocates are definitely onto something here. It is true that persistently describing and treating autistic children or any other kind of children as non-sentient--as non-communicative and non-responsive--will very likely result in their behaviour becoming problematic. In fact, very few adults deal gracefully with being persistently treated as though non-sentient. So this is an impressive show of the power and influence of autism advocacy, and its consequences. But is this taking autism seriously?

Yes, autism advocacy is impressive in the area of spreading fear, dread, horror, and hatred of autism. Autism advocates have demanded that autism be seen as a horrific disease process or tumour, while simultaneously reducing autistics to collections of inadequate, inappropriate, maladaptive, repugnant, repulsive, etc., behaviours. These efforts have been successful. But promoting autistics as non-responsive and non-communicative is anti-scientific, unethical, and harmful. Associating violence with disability is no more accurate or acceptable than associating violence with race. The autism advocacy wholesale vilification of any science (now characterized as the killer rocky shore that breaks and destroys children) that fails to confirm their absolute certainties about autism is a trivialization of autism. It is the opposite of taking autism seriously.

Autism advocates also trivialize autism by promoting ABA-based autism interventions as "medically necessary" autism treatment. This contradicts basic principles of ABA, the bulk of the behaviour analytic literature in autism, and particularly the work of Ivar Lovaas and colleagues (Lovaas, 1979; Lovaas and Smith, 1988, 1989; Lovaas, 1993; Lovaas, 2002; etc.). Autism advocates also place ABA-based autism interventions high above scrutiny or criticism. If I provide factual and verifiable criticisms of the behaviour analytic literature, then (I'm told), I'm expressing "anti-ABA prejudices".

This is as absurd, as non-serious, as claiming that I have "anti-cogntive-science prejudices" and "anti-cognitive-neuroscience prejudices" because I have harshly criticized science and scientists in these areas of autism research (and continue to do so).

The autism advocacy rejection of criticism and scrutiny as "anti-ABA prejudice" places ABA outside the domain of science, which is dependent on criticism, and into the realm of ideology. Autism advocates demand that all decisions made about autistics conform to their ideology, which cannot be questioned or challenged in any way. They want the scientific and ethical standards that benefit and protect all non-autistics disregarded when it comes to legal and public policy decisions about autistics. This too is the opposite of taking autism seriously.

Autism advocates have further trivialized autism by successfully promoting grossly anti-scientific epidemiology which has the effect of denying the existence of most autistics in Canada, and therefore denying most autistics in Canada even minimal services. This demonstrates how autism advocates write off all autistics who have not undergone unlimited "medically necessary" ABA/IBI starting very early in life. So does the widely disseminated autism advocacy position that autistics who do not receive unlimited "medically necessary" ABA/IBI starting early in life need to be abused (kept in restraints, our teeth pulled) in institutions. Autism advocates have been successful in making Canadian society unsafe for any autistic who is not in an ABA program, but is this taking autism seriously?

Autism advocates have also claimed to know with certainty the adult outcomes of autistics who undergo early ABA/IBI. There is no peer-reviewed science to justify this certainty. When there is no science whatsoever to support their positions, autism advocates respond by pretending that there is. Here again are the standards of science and ethics that autism advocates believe autistics deserve, but is this taking autism seriously?

The autism advocacy campaign to legally mandate ABA/IBI as "medically necessary" treatment for Rett's individuals also exemplifies the standards of science and ethics autism advocates find appropriate for autistics. This demonstrates exactly how seriously they take autism and the well-being of autistic people.

Autism advocates also trivialize autism, and show off the scientific and ethical standards they are sure that autistics deserve, by creating and applying novel, untested diagnostic categories and criteria. They are so creative, they can diagnose adults and children, and describe our lives in detail, without having met us or knowing anything about us. They also claim that there are perfect predictors of outcome in autism. The purpose is to divide autism into the (apparently innate) categories of "real" and presumably "fake" autism. When I have time, I'll blog about the empirical bases and seriousness of this "autism reality".

Autism advocates further trivialize autism by responding to any criticism of their actions and statements with mockery, misrepresentation, and defamation. They consider themselves to be infallible. They are right about everything all the time. Their actions, which have consequences for all autistic Canadians at the level of law and public policy, are sacrosanct--anyone who criticizes them in any way is not only deluded, but reprehensible, pernicious, and dangerous (and in my case, a fraud, imposter, and criminal). This makes a productive, science- and ethics-based, respectful public discourse about autism impossible.

The actions of autism advocates have unsurprisingly resulted in Canada's government and major opposition parties agreeing that autistics shouldn't exist at all. Contrast the non-serious non-response of autism advocates to this political consensus that autistic lives should be prevented, with the careful and very serious actions and statements of the CDSS in response to recommendations re prenatal screening. You can see the CDSS in recent media stories here, here and here.

Autism is a disability. Here is a description of what disability means, from the Supreme Court of Canada decision in the Eldridge case:

It is an unfortunate truth that the history of disabled persons in Canada is largely one of exclusion and marginalization. Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions [...] This historical disadvantage has to a great extent been shaped and perpetuated by the notion that disability is an abnormality or flaw. As a result, disabled persons have not generally been afforded the “equal concern, respect and consideration” that s. 15(1) of the Charter demands. Instead, they have been subjected to paternalistic attitudes of pity and charity, and their entrance into the social mainstream has been conditional upon their emulation of ablebodied
[...] One consequence of these attitudes is the persistent social and economic disadvantage faced by the disabled.
[emphasis in blue is mine]

This powerful and accurate definition of disability shows that autistic people are indeed severely disabled in Canadian society. We are at a tremendous disadavantage. This description of disability was central to my intervention in Auton at the Supreme Court of Canada, where I opposed autism advocates on both the parent side and the government side. In Auton, both sides consisted entirely of autism advocates, just as both sides, parents and governments, in the current supposed conflicts re ABA-based interventions are autism advocates. Neither side was or is now interested in providing autistics with genuine assistance so we can proceed safely and succeed in society; as I've written elsewhere, they agree entirely about what autistics are worth and how we should be treated. They are not interested in taking autism seriously. They are only haggling over whose unwanted burden we are.

The disability of autism is trivialized when it is claimed that when autistics are badly treated, harmed or neglected, the problem that has to be gotten rid of is autism (meaning, the existence of autistic people). This is a hallmark of autism advocacy: to insist that we need to be abused and mutilated (kept in restraints, our teeth pulled) in institutions; to deny that autistics are sentient, existent, human or alive; to call us a blight on society; to deny us even basic standards of science and ethics; then to flourish our resulting suffering and poor outcomes as evidence that autism is appalling and must be eradicated. Is this taking autism seriously?


Keen, D. (2005). The use of non-verbal repair strategies by children with autism. Research in Developmental Disabilities, 26, 243-254.

Keen, D., Sigafoos, J. & Woodyatt, G. (2005). Teacher responses to the communicative attempts of children with autism. Journal of Developmental and Physical Disabilities, 17, 19-33.

Lovaas, O.I. (1979). Contrasting illness and behavioral models for the treatment of autistic children: A historical perspective. Journal of Autism and Developmental Disorders, 9, 315-323.

Lovaas, O.I . (2002) Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.

Lovaas, O.I., & Smith, T. (1988). Intensive behavioral treatment for young autistic children. In B.B. Lahey, and A.E. Kazdin (Eds.), Advances in Clinical Child Psychology, 11. New York: Plenum Press.

Lovaas, O.I., & Smith, T. (1989). A comprehensive behavior theory of autistic children: Paradigm for research and treatment. Journal of Behavior Therapy and Experimental Psychiatry, 20, 17-29.