This is a description of one of Leo Kanner's autistic "patients", from a follow-up study Kanner published in 1956 with his colleague Leon Eisenberg. This paper is reprinted in Kanner's 1973 book.
Jay S., now almost 15 years old, presented in the lower grades considerable difficulties to his teachers, who were exceptionally understanding and accepting. He wandered about the classroom, masturbated openly, and staged temper tantrums. He learned to conform, did phenomenally well in mathematics, was sent to an accelerated school, and is now finishing the eleventh grade with top marks. He is a peculiar child, rather obese, who spends his spare time collecting maps and postage stamps and has little more to do with people than is absolutely necessary for the maintenance of a superficial relationship. He achieved a Binet IQ of not less than 150.
Reference:
Kanner, L. & Eisenberg, L. (1956/1973). Notes on the follow-up studies. In Kanner, L., Childhood Psychosis: Initial Studies and New Insights. Washington D.C.: Winston, pp 77-90.
Saturday, February 24, 2007
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
norms [...] 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?
References:
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.
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
norms [...] 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?
References:
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.
Thursday, February 15, 2007
Autism, a blight on society
In the House of Commons late last year, Liberal MP Blair Wilson made this statement re autistic children and "medically necessary" ABA/IBI:
For the child's humanity, treatment is necessary.
Then he said:
It is time Canada took action against autism, a blight on society. We must support this bill.
To ensure that no one has any cause to wonder if this was really what Mr Wilson meant to say, Mr Wilson highlighted this statement on his website--in large, bold letters:
It is time Canada took action against autism, a blight on society. We must support this bill.
"This bill" is Prince Edward Island Liberal MP Shawn Murphy's private member's bill C-304. This bill's main purpose is to alter the Canada Health Act to single out autism as a disease for which ABA/IBI is prescribed and mandated as "medically necessary" treatment. This bill has the effect of legislating physician-equivalent status for behaviour analysts, of legislating ABA/IBI as "medically necessary" for those diagnosed with Rett's, and of legislating all autistics as not only sick but "suffering". This will be the law. But back to Mr Wilson.
According to Mr Wilson, autistics who have not had "medically necessary" ABA/IBI from very early in life--in order to stop us from blighting society--have no humanity. Most autistics in Canada have not had ABA/IBI from an early age, for many reasons, including that we are too old. We grew up before ABA/IBI was easily or at all available. There are very likely at least 150,000 autistics in Canada who have not had early and unlimited ABA/IBI. That number exceeds the entire population of Prince Edward Island, including Shawn Murphy. Mr Wilson has stated that a group of Canadians more numerous than all Prince Edward Islanders do not have humanity and are therefore not human.
When I spoke with Mr Wilson's office, these statements of Mr Wilson's were vigorously defended. They are true, I was told, because FEAT says so.
FEAT--Families for Early Autism Treatment--recently stated in the Globe and Mail that autistics who do not undergo unlimited "medically necessary" ABA/IBI starting early in life must be institutionalized by the time we reach adolescence. We must live in restraints and have our teeth pulled.
The ethicist Margaret Somerville--who was not aware of FEAT's prominent recommendations--has recently written in the Globe and Mail,
May we redesign disabled people to make them easier to care for? They used to take out all the teeth of mentally ill people so they couldn't bite their caregivers, but we are rightly appalled by that now.
But no one is appalled or even raises an eyebrow when it is recommended that most autistics in Canada (a population larger than that of Prince Edward Island, including Shawn Murphy) be abused this way. Certainly not Mr Wilson, who forcefully supports and promotes FEAT. Mr Wilson has used his full power and influence to inform Canadians that most autistics in Canada are, unlike criminals and terrorists, not even human. We have no humanity. Those who are not human have no human rights. And those who have no human rights can be grossly abused with impunity. This is an experience shared by many of us.
Other Liberal MPs have had additional ideas about how to write off autistic Canadians who they see as blighting the country.
Ruby Dhalla has stated the Liberal Party of Canada position--a position shared by the Conservative government and the NDP--that ideally there would be no autistic people at all in Canada. In order to sensationally raise alarm about a "shocking" autism "epidemic", she has also rejected the broad scientific consensus that there has been a high, stable rate of autism. Instead, she insists that in 1996 and before, there were only 1 in 10,000 autistics. She and her office have repeatedly claimed that this figure, forcefully promoted by FEAT, is true, and further, that it comes from multiple expert researchers. Her "expert" autism epidemiology, a work of pure and absurd anti-scientific fiction, has the effect of eliminating the existence of more than 150,000 autistic Canadians--more than the entire population of Prince Edward Island, including Shawn Murphy. But Ms Dhalla does not care. She is sticking to her guns. She does not want most autistics in Canada to get any services at all, or even to be acknowledged. We don't exist--because she says so.
The supposed "debate" about Shawn Murphy's bill C-304 resumed yesterday. In this "debate", Liberal MP Brian Murphy stated that autism is
no less detrimental than the diagnosis of terminal cancer
and is therefore fatal if not treated. According to Brian Murphy, most autistic people in Canada are dead. We have not had the one "medically necessary" treatment he claims with absolute certainty is the only way to save us from our terminal disease.
The above statements represent the major achievements of autism advocacy in Canada. Autistics have officially been declared diseased, a blight on society, subhuman, actually and ideally non-existent, and dead. The organizations and individuals applauded for representing us demand that we be institutionalized, be kept in restraints, and be permanently mutilated if we don't sufficiently become normal. Not one of our federal parties, not one Canadian MP or Senator, has expressed even a whisper of protest against any of this.
Canada is officially a country which hates autism, and therefore hates the existence of autistic people. No fact will be permitted to get in the way of this hideous and irrational hatred. No genuine debate about autism, no genuine assistance for autistic Canadians, can emerge from this gratuitous, dangerous and unopposed outpouring of denigration and dehumanization.
For the child's humanity, treatment is necessary.
Then he said:
It is time Canada took action against autism, a blight on society. We must support this bill.
To ensure that no one has any cause to wonder if this was really what Mr Wilson meant to say, Mr Wilson highlighted this statement on his website--in large, bold letters:
It is time Canada took action against autism, a blight on society. We must support this bill.
"This bill" is Prince Edward Island Liberal MP Shawn Murphy's private member's bill C-304. This bill's main purpose is to alter the Canada Health Act to single out autism as a disease for which ABA/IBI is prescribed and mandated as "medically necessary" treatment. This bill has the effect of legislating physician-equivalent status for behaviour analysts, of legislating ABA/IBI as "medically necessary" for those diagnosed with Rett's, and of legislating all autistics as not only sick but "suffering". This will be the law. But back to Mr Wilson.
According to Mr Wilson, autistics who have not had "medically necessary" ABA/IBI from very early in life--in order to stop us from blighting society--have no humanity. Most autistics in Canada have not had ABA/IBI from an early age, for many reasons, including that we are too old. We grew up before ABA/IBI was easily or at all available. There are very likely at least 150,000 autistics in Canada who have not had early and unlimited ABA/IBI. That number exceeds the entire population of Prince Edward Island, including Shawn Murphy. Mr Wilson has stated that a group of Canadians more numerous than all Prince Edward Islanders do not have humanity and are therefore not human.
When I spoke with Mr Wilson's office, these statements of Mr Wilson's were vigorously defended. They are true, I was told, because FEAT says so.
FEAT--Families for Early Autism Treatment--recently stated in the Globe and Mail that autistics who do not undergo unlimited "medically necessary" ABA/IBI starting early in life must be institutionalized by the time we reach adolescence. We must live in restraints and have our teeth pulled.
The ethicist Margaret Somerville--who was not aware of FEAT's prominent recommendations--has recently written in the Globe and Mail,
May we redesign disabled people to make them easier to care for? They used to take out all the teeth of mentally ill people so they couldn't bite their caregivers, but we are rightly appalled by that now.
But no one is appalled or even raises an eyebrow when it is recommended that most autistics in Canada (a population larger than that of Prince Edward Island, including Shawn Murphy) be abused this way. Certainly not Mr Wilson, who forcefully supports and promotes FEAT. Mr Wilson has used his full power and influence to inform Canadians that most autistics in Canada are, unlike criminals and terrorists, not even human. We have no humanity. Those who are not human have no human rights. And those who have no human rights can be grossly abused with impunity. This is an experience shared by many of us.
Other Liberal MPs have had additional ideas about how to write off autistic Canadians who they see as blighting the country.
Ruby Dhalla has stated the Liberal Party of Canada position--a position shared by the Conservative government and the NDP--that ideally there would be no autistic people at all in Canada. In order to sensationally raise alarm about a "shocking" autism "epidemic", she has also rejected the broad scientific consensus that there has been a high, stable rate of autism. Instead, she insists that in 1996 and before, there were only 1 in 10,000 autistics. She and her office have repeatedly claimed that this figure, forcefully promoted by FEAT, is true, and further, that it comes from multiple expert researchers. Her "expert" autism epidemiology, a work of pure and absurd anti-scientific fiction, has the effect of eliminating the existence of more than 150,000 autistic Canadians--more than the entire population of Prince Edward Island, including Shawn Murphy. But Ms Dhalla does not care. She is sticking to her guns. She does not want most autistics in Canada to get any services at all, or even to be acknowledged. We don't exist--because she says so.
The supposed "debate" about Shawn Murphy's bill C-304 resumed yesterday. In this "debate", Liberal MP Brian Murphy stated that autism is
no less detrimental than the diagnosis of terminal cancer
and is therefore fatal if not treated. According to Brian Murphy, most autistic people in Canada are dead. We have not had the one "medically necessary" treatment he claims with absolute certainty is the only way to save us from our terminal disease.
The above statements represent the major achievements of autism advocacy in Canada. Autistics have officially been declared diseased, a blight on society, subhuman, actually and ideally non-existent, and dead. The organizations and individuals applauded for representing us demand that we be institutionalized, be kept in restraints, and be permanently mutilated if we don't sufficiently become normal. Not one of our federal parties, not one Canadian MP or Senator, has expressed even a whisper of protest against any of this.
Canada is officially a country which hates autism, and therefore hates the existence of autistic people. No fact will be permitted to get in the way of this hideous and irrational hatred. No genuine debate about autism, no genuine assistance for autistic Canadians, can emerge from this gratuitous, dangerous and unopposed outpouring of denigration and dehumanization.
Saturday, February 03, 2007
Entirely different due to ABA
While it's going to look like I'm singling out two specific parents, that isn't the purpose. They are just two of the many available examples of what I want to illustrate. There are many more similar examples--not only reported in the media, but also in the science, where the observers are not parents but behaviour analysts and cognitive scientists.
The first parent is the Conservative MP Mike Lake, who has talked about his brilliant autistic son in the media and in the House of Commons. The first I read about Mr Lake's son Jaden (who, at age 11, communicates via keyboard) was in a National Post story. Here is Mr Lake describing Jaden at about age 2yrs:
We could tell he was a smart kid, in terms of numbers and the way he played with letter toys. But he would sit in a corner and play and you could not get his attention at all. We wondered if he was deaf, but if you went into a different room and put Winnie the Pooh on television, he'd hear it.
It looks like Jaden has taught himself both some degree of numeracy and some degree of literacy--all by age 2. As is characteristic of autistics, he does not orient to stimuli in typical ways, and is attracted to the kinds of information from which he learns well.
In the House of Commons, Mr Lake elaborates on Jaden's extraordinary abilities, evident from a very early age:
Between 18 months and 2 years old Jaden started doing some pretty amazing things. Like just about every kid his age, he had one of those foam alphabets that fit inside a foam frame. One day on a whim Debi took the frame away and left him with just a jumbled pile of letters. Jaden proceeded to put the letters in order just as fast as we would do it the very first time.
Then to our amazement, a friend of ours mixed up the letters in a pile and put out the letter Z. Jaden, without missing a beat, put the letters in reverse order Z, Y, X, W, V and so on just as fast as he had done forward.
This shows that Jaden has learned a great deal from his environment, that he is responsive to this environment, and that he responds to the actions of others (his way of communicating and playing). But Mr Lake again sees problems:
As amazing as things like this were, during his second year we started to notice some other things that caused us some concern regarding Jaden's development. He was extremely content playing on his own with little or no interest in playing with other kids or interacting with adults. His speech was not really developing beyond the first initial few sounds and he was very focused on patterns, often spending an inordinate amount of time lining up his videos or stacking cups in perfect order. He paid little attention when we tried to talk to him or play with him. We would have thought he had a hearing impairment except for the fact that if he heard a video he liked start up in another room at very low volume, he would instantly stop what he was doing and go to watch it.
So what is the solution? This is Mr Lake describing Jaden's ABA program in the National Post:
The first thing they did was sit Jaden at a table and put a spoon in front of him and ask him to hand them the spoon. They would do that six hours a day, for days and weeks. The next stage, they would put a spoon and a fork down and go through the whole process again. It is very tedious and intensive. But his pediatrician said that he is entirely different due to ABA. He's now one of the most amazing kids -- he will look you in the eye and he will understand you when you ask him to do something.
The second example, where ABA is also said to have changed everything, is from Autism Vox. Here is the first part of the first comment on a post about ABA and recovery:
My daughter has made great strides with ABA therapy as well. I mean I don’t think there’s any question of the effectiveness of it for enabling autistic children to learn. Every single thing she knows, she learned from ABA. This is fact. Except for the things that seem to be her gifts. She spelled words with refrigerator magnets long before ABA therapy. She plays the piano almost in spite of ABA therapy. She taught herself to read without the use of ABA therapy. Adding and subtracting. She was obsessed with numbers and sequences of numbers before ABA.
Having said that, she had no language before ABA, no eye contact, no social skills, absolutely ignored everyone and everything. This is really amazing though. My mother has a small dog. She babysat for Jodi for the first two years of her life. She started a not so good ABA home program in my mother’s house where she spent the day. This dog never meant a thing to her. After ABA therapy, when we go to my mother’s house she’s afraid of the dog. It’s weird. It’s almost like before ABA that dog didn’t even exist. I know this is subjective, but prior to ABA she seemed much less engaged in the world. Much less is an understatement. She seemed like she wasn’t even there and when something was thrust upon her like someone saying hello up close that she couldn’t avoid, she’d cover her ears.
ABA changed all those things in 1 year.
This is how I responded on Autism Vox:
An autistic who teaches herself (it looks like, very early) to read and spell–has “no language” and totally ignores everything?
And she doesn’t just teach herself to read and spell, but plays the piano (in spite of ABA–because ABA won’t allow her to learn how she learns well), teaches herself to add and subtract, etc?
And this girl is oblivious? And since when does written language mean “no language”? And how does a girl who is totally oblivious (according to the above, “She seemed like she wasn’t even there”–the usual description of us as not really existing because we orient atypically to stimuli) teach herself how to read and spell, etc.?
Even when autistics demonstrate clearly that there are ways in which we learn extraordinarily well (including learning language), because the way we learn is atypical, this is written off as “she wasn’t even there” and “she had no language before ABA”. Therefore, she has to be completely altered by ABA programs, in order to persuade her entourage that she is “there” and that she can learn.
My view is that ABA “works” when autistic children are totally written off (“not there”, oblivious, “no language”, etc). In this case, at least ABA will demonstrate to parents that their child exists and can learn–by giving the child “right” non-autistic behaviours, and eliminating “wrong” autistic behaviours. This is even though the “wrong” autistic behaviours previously resulted in extraordinarly learning by this child. This is even though the child learns with much greater difficulty in ABA, and in a much more limited way, than she would if provided with the materials and opportunities to learn how she has amply demonstrated she learns best. But even though this use of ABA “works” (see above–after ABA, the parents notice that the child is present and sentient, and then they credit all progress to ABA), this is fundamentally unethical. A child should not be put in a program to compromise her learning (how she learned to read, spell, do arithmetic, play the piano, etc.) in order to deal with parents who, against all evidence, decide she is oblivious because she is not like them.
It is some kind of tribute to autism advocacy (Mr Lake read "Let Me Hear Your Voice"--a book which describes autistics as being non-sentient, inhuman, and dead--just before Jaden was officially diagnosed) that so many parents view their autistic children the way the parents above did.
I was asked once if there were circumstances in which I might consider that ABA programs really should be used with autistic kids. I gave examples where autistic children are described as, and assumed to be, non-sentient. When autistics are described and treated as non-sentient, this is now routinely praised by autism advocates as "autism reality", as being a true representation of how devastating it is to have an autistic child.
Being considered non-sentient can be dangerous for any child. Autistic adults also routinely get described and treated as non-sentient (this has happened to me), and this is definitely dangerous for us.
If ABA programs result in parents altering their views to see their child as sentient, aware and able to learn, then the child's situation may not be as bad as it had been. But as I wrote above, this is not an ethically acceptable solution. The ethical course of action is to train parents to recognize that their child is sentient, responsive (to the environment, to other people), capable of learning (though not necessarily in typical ways), and communicative (ditto). Parents can then be trained to respond to their child's communication and learning. Interventions which train parents to be responsive (rather than "directive" and "intrusive") to their autistic children have demonstrated their success in several published peer-reviewed papers, including a randomized controlled trial (Aldred et al., 2004).
But we live in a world where autism advocates deny that this kind of science even exists. Also, we live in a world where autism advocates use their power and influence to disseminate the "facts" that autistics can't communicate, learn or even be sentient outside of ABA programs. So is it better for an autistic child to be in an ABA program than to be treated as though non-sentient (unaware, unresponsive, incapable of learning, unable to communicate, etc.)? Why should this "choice" be imposed on anyone?
(Edit: And some parents whose autistic children receive optimal ABA services still continue to view these children as non-sentient and doomed, and are applauded by autism advocates for expressing these "autism reality" views in the mass media.)
Reference:
Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420-1430.
The first parent is the Conservative MP Mike Lake, who has talked about his brilliant autistic son in the media and in the House of Commons. The first I read about Mr Lake's son Jaden (who, at age 11, communicates via keyboard) was in a National Post story. Here is Mr Lake describing Jaden at about age 2yrs:
We could tell he was a smart kid, in terms of numbers and the way he played with letter toys. But he would sit in a corner and play and you could not get his attention at all. We wondered if he was deaf, but if you went into a different room and put Winnie the Pooh on television, he'd hear it.
It looks like Jaden has taught himself both some degree of numeracy and some degree of literacy--all by age 2. As is characteristic of autistics, he does not orient to stimuli in typical ways, and is attracted to the kinds of information from which he learns well.
In the House of Commons, Mr Lake elaborates on Jaden's extraordinary abilities, evident from a very early age:
Between 18 months and 2 years old Jaden started doing some pretty amazing things. Like just about every kid his age, he had one of those foam alphabets that fit inside a foam frame. One day on a whim Debi took the frame away and left him with just a jumbled pile of letters. Jaden proceeded to put the letters in order just as fast as we would do it the very first time.
Then to our amazement, a friend of ours mixed up the letters in a pile and put out the letter Z. Jaden, without missing a beat, put the letters in reverse order Z, Y, X, W, V and so on just as fast as he had done forward.
This shows that Jaden has learned a great deal from his environment, that he is responsive to this environment, and that he responds to the actions of others (his way of communicating and playing). But Mr Lake again sees problems:
As amazing as things like this were, during his second year we started to notice some other things that caused us some concern regarding Jaden's development. He was extremely content playing on his own with little or no interest in playing with other kids or interacting with adults. His speech was not really developing beyond the first initial few sounds and he was very focused on patterns, often spending an inordinate amount of time lining up his videos or stacking cups in perfect order. He paid little attention when we tried to talk to him or play with him. We would have thought he had a hearing impairment except for the fact that if he heard a video he liked start up in another room at very low volume, he would instantly stop what he was doing and go to watch it.
So what is the solution? This is Mr Lake describing Jaden's ABA program in the National Post:
The first thing they did was sit Jaden at a table and put a spoon in front of him and ask him to hand them the spoon. They would do that six hours a day, for days and weeks. The next stage, they would put a spoon and a fork down and go through the whole process again. It is very tedious and intensive. But his pediatrician said that he is entirely different due to ABA. He's now one of the most amazing kids -- he will look you in the eye and he will understand you when you ask him to do something.
The second example, where ABA is also said to have changed everything, is from Autism Vox. Here is the first part of the first comment on a post about ABA and recovery:
My daughter has made great strides with ABA therapy as well. I mean I don’t think there’s any question of the effectiveness of it for enabling autistic children to learn. Every single thing she knows, she learned from ABA. This is fact. Except for the things that seem to be her gifts. She spelled words with refrigerator magnets long before ABA therapy. She plays the piano almost in spite of ABA therapy. She taught herself to read without the use of ABA therapy. Adding and subtracting. She was obsessed with numbers and sequences of numbers before ABA.
Having said that, she had no language before ABA, no eye contact, no social skills, absolutely ignored everyone and everything. This is really amazing though. My mother has a small dog. She babysat for Jodi for the first two years of her life. She started a not so good ABA home program in my mother’s house where she spent the day. This dog never meant a thing to her. After ABA therapy, when we go to my mother’s house she’s afraid of the dog. It’s weird. It’s almost like before ABA that dog didn’t even exist. I know this is subjective, but prior to ABA she seemed much less engaged in the world. Much less is an understatement. She seemed like she wasn’t even there and when something was thrust upon her like someone saying hello up close that she couldn’t avoid, she’d cover her ears.
ABA changed all those things in 1 year.
This is how I responded on Autism Vox:
An autistic who teaches herself (it looks like, very early) to read and spell–has “no language” and totally ignores everything?
And she doesn’t just teach herself to read and spell, but plays the piano (in spite of ABA–because ABA won’t allow her to learn how she learns well), teaches herself to add and subtract, etc?
And this girl is oblivious? And since when does written language mean “no language”? And how does a girl who is totally oblivious (according to the above, “She seemed like she wasn’t even there”–the usual description of us as not really existing because we orient atypically to stimuli) teach herself how to read and spell, etc.?
Even when autistics demonstrate clearly that there are ways in which we learn extraordinarily well (including learning language), because the way we learn is atypical, this is written off as “she wasn’t even there” and “she had no language before ABA”. Therefore, she has to be completely altered by ABA programs, in order to persuade her entourage that she is “there” and that she can learn.
My view is that ABA “works” when autistic children are totally written off (“not there”, oblivious, “no language”, etc). In this case, at least ABA will demonstrate to parents that their child exists and can learn–by giving the child “right” non-autistic behaviours, and eliminating “wrong” autistic behaviours. This is even though the “wrong” autistic behaviours previously resulted in extraordinarly learning by this child. This is even though the child learns with much greater difficulty in ABA, and in a much more limited way, than she would if provided with the materials and opportunities to learn how she has amply demonstrated she learns best. But even though this use of ABA “works” (see above–after ABA, the parents notice that the child is present and sentient, and then they credit all progress to ABA), this is fundamentally unethical. A child should not be put in a program to compromise her learning (how she learned to read, spell, do arithmetic, play the piano, etc.) in order to deal with parents who, against all evidence, decide she is oblivious because she is not like them.
It is some kind of tribute to autism advocacy (Mr Lake read "Let Me Hear Your Voice"--a book which describes autistics as being non-sentient, inhuman, and dead--just before Jaden was officially diagnosed) that so many parents view their autistic children the way the parents above did.
I was asked once if there were circumstances in which I might consider that ABA programs really should be used with autistic kids. I gave examples where autistic children are described as, and assumed to be, non-sentient. When autistics are described and treated as non-sentient, this is now routinely praised by autism advocates as "autism reality", as being a true representation of how devastating it is to have an autistic child.
Being considered non-sentient can be dangerous for any child. Autistic adults also routinely get described and treated as non-sentient (this has happened to me), and this is definitely dangerous for us.
If ABA programs result in parents altering their views to see their child as sentient, aware and able to learn, then the child's situation may not be as bad as it had been. But as I wrote above, this is not an ethically acceptable solution. The ethical course of action is to train parents to recognize that their child is sentient, responsive (to the environment, to other people), capable of learning (though not necessarily in typical ways), and communicative (ditto). Parents can then be trained to respond to their child's communication and learning. Interventions which train parents to be responsive (rather than "directive" and "intrusive") to their autistic children have demonstrated their success in several published peer-reviewed papers, including a randomized controlled trial (Aldred et al., 2004).
But we live in a world where autism advocates deny that this kind of science even exists. Also, we live in a world where autism advocates use their power and influence to disseminate the "facts" that autistics can't communicate, learn or even be sentient outside of ABA programs. So is it better for an autistic child to be in an ABA program than to be treated as though non-sentient (unaware, unresponsive, incapable of learning, unable to communicate, etc.)? Why should this "choice" be imposed on anyone?
(Edit: And some parents whose autistic children receive optimal ABA services still continue to view these children as non-sentient and doomed, and are applauded by autism advocates for expressing these "autism reality" views in the mass media.)
Reference:
Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420-1430.
Thursday, February 01, 2007
Not even human
Autism again figures prominently in this month's APS Presidential Column by Morton Ann Gernsbacher, "On Not Being Human" (which I strongly recommend be read in its entirety). She asks,
Do we all agree that all humans are indeed, human?
And points out historical examples where the humanity of humans has been denied, including:
The anonymous tract, Disputatio Nova Contra Mulieres, Qua Probatur Eas Homines Non Esse (A New Argument Against Women, in Which it Is Demonstrated That They Are not Human Beings), first published in 1595, was reprinted prolifically during the 17th and 18th centuries.
And:
In the 1860s, British anthropologists espoused that Blacks were an inferior species, more comparable to apes than to Caucasians, and therefore well suited for slavery.
And:
At the Nuremberg Trial, one SS general explained his allegiance to genocide by the simple contention that “Jews are not even human.”
Dr Gernsbacher then shows that assertions that some humans aren't human are not confined to the past. She supplies an example of a statement made by a language researcher at a conference not so many years ago:
“Oh, I’ve seen children with Williams syndrome. They don’t count. They’re not even human. They must belong to some other species entirely.”
As Dr Gernsbacher points out, these spoken words did not make it into print. This contrasts with the situation in autism. Autistics have been prominently denied human status in accolade-laden books and in prominent peer-reviewed papers:
For example, in a recent New York Times “notable book of the year,” an internationally acclaimed psychological scientist segregated autistic people from other humans and placed them “together with robots and chimpanzees.”
Dr Gernsbacher has not named this acclaimed cognitive scientist, but he is instantly recognizable as Steven Pinker. She also provides this quote:
“it’s as if they [autistic people] do not understand or are missing a core aspect of what it is to be human”
Without peeking at the references, I have no trouble instantly attributing this one to Bryna Siegel, who has been an expert witness for the government side in more than one Canadian ABA legal battle (e.g., Wynberg and Hewko).
Dr Gernsbacher goes on to explore of the work of Micheal Tomasello (again, not named, but unmistakable), who published two major target articles in the journal Behavioral and Brain Sciences, in 1993 then in 2005. Dr Tomasello has authored many other articles as well as a highly praised and influential book, which have in common his contention that autistics, like apes, lack the essential features defining humans as human. Here is how Dr Gernsbacher describes the 2005 BBS article:
In a more recent scholarly article, also written with the aim of delineating “the crucial difference between human cognition and that of other species,” autistic people were again segregated from other humans and placed with great apes. After acknowledging that the empirical literature demonstrates that “great apes and children with autism are clearly not blind to all aspects of intentional action,” the authors raised the bar (“understanding the intentional actions and perceptions of others is not by itself sufficient to produce humanlike social and cultural activities”), and continued to pound home their belief that autistic children do not “engage socially and culturally with others in the ways that human children do”; they do not “interact with other persons in the species-typical manner.” Their social behavior is just not human.
What Dr Gernsbacher does not point out is that the examples she provides are not exceptional. There is a list of famous scientists, currently prominent in various disciplines, who have in various ways denied that autistics are human (or even alive). In addition to Steven Pinker, Michael Tomasello, and Bryna Siegel, this list would include Peter Hobson, Fred Volkmar, Thomas Insel, V.S. Ramachandran, Ivar Lovaas, and Paul Bloom.
Dr Gernsbacher concludes:
Why are humans dehumanized? According to Morton Deutsch, this year’s APS James McKeen Cattell award recipient, humans are dehumanized when they are perceived as a threat. What threat do humans with Williams syndrome and autistic humans pose to psychological scientists? A threat to the universality of the scientists’ theories, a threat to the scientists’ ability to accept human diversity?
Last fall, a Duquesne University sophomore violated his Catholic university’s code of conduct by posting on Facebook his opinion that homosexual behavior was “subhuman.” Shouldn’t psychological scientists be held to an equally high code of conduct? In addition to being required to remove his offensive comment from the Web, the Duquesne sophomore had to write a 10-page essay on respect for human dignity. I wish some psychological scientists would at least read, if not write, a similar essay.
Do we all agree that all humans are indeed, human?
And points out historical examples where the humanity of humans has been denied, including:
The anonymous tract, Disputatio Nova Contra Mulieres, Qua Probatur Eas Homines Non Esse (A New Argument Against Women, in Which it Is Demonstrated That They Are not Human Beings), first published in 1595, was reprinted prolifically during the 17th and 18th centuries.
And:
In the 1860s, British anthropologists espoused that Blacks were an inferior species, more comparable to apes than to Caucasians, and therefore well suited for slavery.
And:
At the Nuremberg Trial, one SS general explained his allegiance to genocide by the simple contention that “Jews are not even human.”
Dr Gernsbacher then shows that assertions that some humans aren't human are not confined to the past. She supplies an example of a statement made by a language researcher at a conference not so many years ago:
“Oh, I’ve seen children with Williams syndrome. They don’t count. They’re not even human. They must belong to some other species entirely.”
As Dr Gernsbacher points out, these spoken words did not make it into print. This contrasts with the situation in autism. Autistics have been prominently denied human status in accolade-laden books and in prominent peer-reviewed papers:
For example, in a recent New York Times “notable book of the year,” an internationally acclaimed psychological scientist segregated autistic people from other humans and placed them “together with robots and chimpanzees.”
Dr Gernsbacher has not named this acclaimed cognitive scientist, but he is instantly recognizable as Steven Pinker. She also provides this quote:
“it’s as if they [autistic people] do not understand or are missing a core aspect of what it is to be human”
Without peeking at the references, I have no trouble instantly attributing this one to Bryna Siegel, who has been an expert witness for the government side in more than one Canadian ABA legal battle (e.g., Wynberg and Hewko).
Dr Gernsbacher goes on to explore of the work of Micheal Tomasello (again, not named, but unmistakable), who published two major target articles in the journal Behavioral and Brain Sciences, in 1993 then in 2005. Dr Tomasello has authored many other articles as well as a highly praised and influential book, which have in common his contention that autistics, like apes, lack the essential features defining humans as human. Here is how Dr Gernsbacher describes the 2005 BBS article:
In a more recent scholarly article, also written with the aim of delineating “the crucial difference between human cognition and that of other species,” autistic people were again segregated from other humans and placed with great apes. After acknowledging that the empirical literature demonstrates that “great apes and children with autism are clearly not blind to all aspects of intentional action,” the authors raised the bar (“understanding the intentional actions and perceptions of others is not by itself sufficient to produce humanlike social and cultural activities”), and continued to pound home their belief that autistic children do not “engage socially and culturally with others in the ways that human children do”; they do not “interact with other persons in the species-typical manner.” Their social behavior is just not human.
What Dr Gernsbacher does not point out is that the examples she provides are not exceptional. There is a list of famous scientists, currently prominent in various disciplines, who have in various ways denied that autistics are human (or even alive). In addition to Steven Pinker, Michael Tomasello, and Bryna Siegel, this list would include Peter Hobson, Fred Volkmar, Thomas Insel, V.S. Ramachandran, Ivar Lovaas, and Paul Bloom.
Dr Gernsbacher concludes:
Why are humans dehumanized? According to Morton Deutsch, this year’s APS James McKeen Cattell award recipient, humans are dehumanized when they are perceived as a threat. What threat do humans with Williams syndrome and autistic humans pose to psychological scientists? A threat to the universality of the scientists’ theories, a threat to the scientists’ ability to accept human diversity?
Last fall, a Duquesne University sophomore violated his Catholic university’s code of conduct by posting on Facebook his opinion that homosexual behavior was “subhuman.” Shouldn’t psychological scientists be held to an equally high code of conduct? In addition to being required to remove his offensive comment from the Web, the Duquesne sophomore had to write a 10-page essay on respect for human dignity. I wish some psychological scientists would at least read, if not write, a similar essay.
Sunday, January 21, 2007
Autism Every Day's harsh realities
Here are some statements by the leading lights of autism advocacy in Canada. All these people are also prominent leaders of FEAT.
Jean Lewis (responding to the Auton Supreme Court of Canada decision):
I've had parents call me about the possibility of refugee status to the United States. Can you believe it? Canadian refugees to the United States where they don't discriminate against disabled children
Norrah Whitney (testifying in the Senate):
Federal laws such as these are what make the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs and housing for people with autism and other disabilities is not optional. It is the law.
Andrew Kavchak:
What is urgently needed now are three pieces of federal legislation – a Canadians with Disabilities Act, a Mental Health Parity Act and a Federal Individuals with Disability Education Act (IDEA). All these federal laws are what makes the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs, housing, et cetera, for persons with autism and other disabilities is not optional -- it's the law.
Sabrina Freeman, from an interview after the Auton SCC decision:
There are no legal avenues left, she said, adding that parents have three choices: move to the United States, put children in the care of the government, or try to keep paying for the treatment on their own while trying to get federal legislation that is similar to that in the U.S.
The United States, said Freeman, has two "extremely" strong laws - the American Disabilities Act and the Individual Disability Education Act - to protect people with disabilities, she said.
"We have nothing in Canada except for the Charter [of Rights and Freedoms]. We should be proud of our Charter, our Charter is fantastic," she said, "but you know what? It's not worth the paper its written on."
Indeed, these are only a handful of the possible statements from Canada's elite autism advocates, all praising the US as a place where services, particularly ABA/IBI, are provided to autistics as a matter of course. Ms Lewis' "refugee" story appeared in the media around the world, informing everyone that the US is the place to be if you have an autistic child. And who would dare, who would have the temerity to disagree with these autism advocacy heavyweights?
Now it is again these and other pre-eminent Canadian autism advocates who have uncritically embraced then forcefully promoted the Autism Speaks video, Autism Every Day.
The purpose of this video is to show the harsh realities of living with autism, and I think this hard-hitting video accomplishes this extremely well. I'll get back to this point a bit later.
What is striking about this video is that all the autistic children are doing extremely badly, and all their parents are miserable and have appalling lives. This is according to the parents themselves. Their lives are hell. Their children are doomed.
They must live in Canada, where according to our autism advocates, the services for autistic children are so grossly inadequate that Canadian parents are considering becoming refugees to the US, where the ABA/IBI services they demand are there for the taking. And as you can see, Canadian autism advocates are demanding sweeping changes to laws in Canada so that autism services are provided exactly like they are in the US.
But back to Autism Every Day. It's Canadian, right? It must be, because our famous autism advocates support it to the hilt.
But in reality, or in "autism reality", Autism Every Day is 100% American. Those doomed children and their suffering parents are all Americans. They live exactly where Canada's autism advocates want to live, so they can--they say--freely and easily get all the ABA/IBI services they want.
Because disagreeing with autism advocates is perilous (see Canada's notorious autism advocacy flagship website, commonly known as the "hate site"), we are required to assume that the American parents in Autism Every Day had free access to the services that autism advocates in Canada are demanding--that is, unlimited ABA/IBI.
Another glossy, hard-hitting Autism Speaks effort, an article in the magazine Town and Country, helpfully shows that American children are getting ABA/IBI, sometimes in impressive amounts (e.g., 50hrs/wk), and of course this would be state-of-the-art ABA/IBI.
As a result, after 3 years of very intensive ABA, one autistic boy still cannot dress himself independently and is projected to require three more years of his 50hrs/wk ABA program to be able to signal "bathroom". His parents are miserable and devastated, and express their wish that their son would drown. Why? Because it would end his suffering, even though ABA/IBI is promoted as "fun" (strangely, in this Autism Speaks article, it's called "grueling"), and this boy is in ABA/IBI most of his waking hours. These parents, who profit from an optimal level of services, also claim that many other parents of autistic children feel just the same as they do, about wishing their child dead.
So Autism Every Day, and Autism Speaks in general (keeping in mind that they have now absorbed Cure Autism Now, as well as NAAR), is a testament to the failure of the services demanded by Canada's autism advocates.
And if Autism Every Day represents the true reality, the "autism reality", of living with autism, as our powerful and influential autism advocates forcefully claim, then it is all the more a monument to the conspicuous failure and remarkable ineffectiveness of the services that these autism advocates are demanding.
Autism advocates in Canada have insisted very forcefully that ABA/IBI is an effective treatment for all autistics. Yet they promote Autism Every Day, in which the 100% failure of the easy availability of ABA/IBI to help either suffering autistic children or their miserable, suffering parents is dramatized to great effect.
Autism Every Day is an excellent record of the harsh realities of autism, if you see it from the children's point of view.
This is the very harsh reality of being an autistic child in a world where autism advocacy is not only prominent and predominant, but ubiquitous and the law.
This is the harsh reality of being written off as a very young child, of having your parents describe you as an appalling burden, of knowing that your parents are ashamed of you, of knowing that your mother wanted to kill you and refrained only because you have a non-autistic sister, of knowing that your parents want to make sure that children like you no longer exist, of being shunted and talked around as if you are non-sentient props, and then being called unresponsive.
When I watched Autism Every Day, my first thought was, what wonderful children. What great, totally cool, wonderful children. I watched it with the sound off. Those kids are marvellous. They can do so many things. They have courage out to there. They have lived through stuff that no child should have to live through, and they are still trying as hard as they can to communicate--to communicate with those who are widely disseminating the anti-scientific information that they can't learn or communicate at all.
Those kids are amazing. They are my heroes. They make sure I (and the people I work with) don't give up, working to find the many things these kids are capable of doing, and finding science- and ethics-based ways to help them succeed as autistic people, and opposing all those who want them in institutions, and working to provide them with a world in which they are welcome, cherished, accommodated, celebrated, assisted, and understood.
Jean Lewis (responding to the Auton Supreme Court of Canada decision):
I've had parents call me about the possibility of refugee status to the United States. Can you believe it? Canadian refugees to the United States where they don't discriminate against disabled children
Norrah Whitney (testifying in the Senate):
Federal laws such as these are what make the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs and housing for people with autism and other disabilities is not optional. It is the law.
Andrew Kavchak:
What is urgently needed now are three pieces of federal legislation – a Canadians with Disabilities Act, a Mental Health Parity Act and a Federal Individuals with Disability Education Act (IDEA). All these federal laws are what makes the United States a remarkably better place for people with disabilities to live than Canada. In the U.S., equality in services, jobs, housing, et cetera, for persons with autism and other disabilities is not optional -- it's the law.
Sabrina Freeman, from an interview after the Auton SCC decision:
There are no legal avenues left, she said, adding that parents have three choices: move to the United States, put children in the care of the government, or try to keep paying for the treatment on their own while trying to get federal legislation that is similar to that in the U.S.
The United States, said Freeman, has two "extremely" strong laws - the American Disabilities Act and the Individual Disability Education Act - to protect people with disabilities, she said.
"We have nothing in Canada except for the Charter [of Rights and Freedoms]. We should be proud of our Charter, our Charter is fantastic," she said, "but you know what? It's not worth the paper its written on."
Indeed, these are only a handful of the possible statements from Canada's elite autism advocates, all praising the US as a place where services, particularly ABA/IBI, are provided to autistics as a matter of course. Ms Lewis' "refugee" story appeared in the media around the world, informing everyone that the US is the place to be if you have an autistic child. And who would dare, who would have the temerity to disagree with these autism advocacy heavyweights?
Now it is again these and other pre-eminent Canadian autism advocates who have uncritically embraced then forcefully promoted the Autism Speaks video, Autism Every Day.
The purpose of this video is to show the harsh realities of living with autism, and I think this hard-hitting video accomplishes this extremely well. I'll get back to this point a bit later.
What is striking about this video is that all the autistic children are doing extremely badly, and all their parents are miserable and have appalling lives. This is according to the parents themselves. Their lives are hell. Their children are doomed.
They must live in Canada, where according to our autism advocates, the services for autistic children are so grossly inadequate that Canadian parents are considering becoming refugees to the US, where the ABA/IBI services they demand are there for the taking. And as you can see, Canadian autism advocates are demanding sweeping changes to laws in Canada so that autism services are provided exactly like they are in the US.
But back to Autism Every Day. It's Canadian, right? It must be, because our famous autism advocates support it to the hilt.
But in reality, or in "autism reality", Autism Every Day is 100% American. Those doomed children and their suffering parents are all Americans. They live exactly where Canada's autism advocates want to live, so they can--they say--freely and easily get all the ABA/IBI services they want.
Because disagreeing with autism advocates is perilous (see Canada's notorious autism advocacy flagship website, commonly known as the "hate site"), we are required to assume that the American parents in Autism Every Day had free access to the services that autism advocates in Canada are demanding--that is, unlimited ABA/IBI.
Another glossy, hard-hitting Autism Speaks effort, an article in the magazine Town and Country, helpfully shows that American children are getting ABA/IBI, sometimes in impressive amounts (e.g., 50hrs/wk), and of course this would be state-of-the-art ABA/IBI.
As a result, after 3 years of very intensive ABA, one autistic boy still cannot dress himself independently and is projected to require three more years of his 50hrs/wk ABA program to be able to signal "bathroom". His parents are miserable and devastated, and express their wish that their son would drown. Why? Because it would end his suffering, even though ABA/IBI is promoted as "fun" (strangely, in this Autism Speaks article, it's called "grueling"), and this boy is in ABA/IBI most of his waking hours. These parents, who profit from an optimal level of services, also claim that many other parents of autistic children feel just the same as they do, about wishing their child dead.
So Autism Every Day, and Autism Speaks in general (keeping in mind that they have now absorbed Cure Autism Now, as well as NAAR), is a testament to the failure of the services demanded by Canada's autism advocates.
And if Autism Every Day represents the true reality, the "autism reality", of living with autism, as our powerful and influential autism advocates forcefully claim, then it is all the more a monument to the conspicuous failure and remarkable ineffectiveness of the services that these autism advocates are demanding.
Autism advocates in Canada have insisted very forcefully that ABA/IBI is an effective treatment for all autistics. Yet they promote Autism Every Day, in which the 100% failure of the easy availability of ABA/IBI to help either suffering autistic children or their miserable, suffering parents is dramatized to great effect.
Autism Every Day is an excellent record of the harsh realities of autism, if you see it from the children's point of view.
This is the very harsh reality of being an autistic child in a world where autism advocacy is not only prominent and predominant, but ubiquitous and the law.
This is the harsh reality of being written off as a very young child, of having your parents describe you as an appalling burden, of knowing that your parents are ashamed of you, of knowing that your mother wanted to kill you and refrained only because you have a non-autistic sister, of knowing that your parents want to make sure that children like you no longer exist, of being shunted and talked around as if you are non-sentient props, and then being called unresponsive.
When I watched Autism Every Day, my first thought was, what wonderful children. What great, totally cool, wonderful children. I watched it with the sound off. Those kids are marvellous. They can do so many things. They have courage out to there. They have lived through stuff that no child should have to live through, and they are still trying as hard as they can to communicate--to communicate with those who are widely disseminating the anti-scientific information that they can't learn or communicate at all.
Those kids are amazing. They are my heroes. They make sure I (and the people I work with) don't give up, working to find the many things these kids are capable of doing, and finding science- and ethics-based ways to help them succeed as autistic people, and opposing all those who want them in institutions, and working to provide them with a world in which they are welcome, cherished, accommodated, celebrated, assisted, and understood.
Friday, January 19, 2007
Autistic intelligence
Dawson, M., Soulières, I., Gernsbacher, M.A., & Mottron, L. (in press). The level and nature of autistic intelligence. Psychological Science.
This paper was accepted today. I'm pretty happy about that. These are the Raven's Progressive Matrices data, some of which we presented in preliminary form at IMFAR 2005 and at the 2006 AAAS conference. They draw attention to the fact that there should be a lot more caution than is currently the case, when making assumptions about what autistics can or can't do. Some serious rethinking is necessary, about intelligence in autism and possibly intelligence in general. Our data demonstrate that areas that have been presumed to be dysfunctional in autism (e.g., fluid intelligence, high-level abstract reasoning) are instead strengths. We have called into question the basis for dividing autism into presumed "high" and "low" functioning.
This paper will probably be published in late 2007. It's my first paper as first author, and what a privilege it is to work with such wonderful colleagues and participants.
This paper was accepted today. I'm pretty happy about that. These are the Raven's Progressive Matrices data, some of which we presented in preliminary form at IMFAR 2005 and at the 2006 AAAS conference. They draw attention to the fact that there should be a lot more caution than is currently the case, when making assumptions about what autistics can or can't do. Some serious rethinking is necessary, about intelligence in autism and possibly intelligence in general. Our data demonstrate that areas that have been presumed to be dysfunctional in autism (e.g., fluid intelligence, high-level abstract reasoning) are instead strengths. We have called into question the basis for dividing autism into presumed "high" and "low" functioning.
This paper will probably be published in late 2007. It's my first paper as first author, and what a privilege it is to work with such wonderful colleagues and participants.
Sunday, January 14, 2007
Verbatim: The UCLA pilot study
I previously wrote about this UCLA pilot study here. What follows is the description of this experiment from Ivar Lovaas' recent book (Lovaas, 2002):
A pilot study done at the UCLA (University of California, Los Angeles) Autism Clinic provides a particularly vivid example of apparent sensory deficits in children with autism. In an attempt to ascertain where a nervous system sensory "block" may be located, the chilren's heart rates, galvanic skin response, pupillary dilations and constrictions, and orientation to stimuli were recorded. Clapping one's hands directly behind a child's back and observing a failure to startle is often used as a diagnostic indicator of autism. We failed to observe a response to hand clapping even though the clapping was loud. Subsequently, and without prior warning, we increased the loudness and fired a very loud noise (from a starting pistol) 2 feet behind each child's back. This sound was of sufficient strength to elicit a major startle in attending adults. In contrast, little or no change was detected in any of the children's behaviors, despite the sensitivity of the measurement instruments employed. However, there were major alterations in all recordings when, instead of firing the loud starting pistol, the children heard the slight sound of a candy bar being unwrapped out of sight. It seemed as if the children would attend to their environment if there was a payoff for doing so. In evaluating the outcome of this experiment, it is important to be reminded of the large differences among persons with autism. In regard to the experiment with the starting pistol, a child with a fear of unusual sounds, such as those from vacuum cleaners or ambulance sirens, may well have reacted differently from those children we observed in the study.
Reference:
Lovaas, O.I . (2002). Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.
A pilot study done at the UCLA (University of California, Los Angeles) Autism Clinic provides a particularly vivid example of apparent sensory deficits in children with autism. In an attempt to ascertain where a nervous system sensory "block" may be located, the chilren's heart rates, galvanic skin response, pupillary dilations and constrictions, and orientation to stimuli were recorded. Clapping one's hands directly behind a child's back and observing a failure to startle is often used as a diagnostic indicator of autism. We failed to observe a response to hand clapping even though the clapping was loud. Subsequently, and without prior warning, we increased the loudness and fired a very loud noise (from a starting pistol) 2 feet behind each child's back. This sound was of sufficient strength to elicit a major startle in attending adults. In contrast, little or no change was detected in any of the children's behaviors, despite the sensitivity of the measurement instruments employed. However, there were major alterations in all recordings when, instead of firing the loud starting pistol, the children heard the slight sound of a candy bar being unwrapped out of sight. It seemed as if the children would attend to their environment if there was a payoff for doing so. In evaluating the outcome of this experiment, it is important to be reminded of the large differences among persons with autism. In regard to the experiment with the starting pistol, a child with a fear of unusual sounds, such as those from vacuum cleaners or ambulance sirens, may well have reacted differently from those children we observed in the study.
Reference:
Lovaas, O.I . (2002). Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.
Wednesday, January 10, 2007
How thick is your cortex?
Morton Ann Gernsbacher is President of the Association for Psychological Science this year, and she's been giving autism a high profile in many of her monthly columns in the APS Observer. You can find two previous examples here and here.
Her latest illuminates a series of results in a trendy area of science, particularly in autism research. That's the measurement of cortical thickness. There have been several published papers, and surely more will come, asserting that autistics' cortices aren't the right thickness at all.
Dr Gernsbacher has put together a big heap of findings about thick and thin cortices, complete with how they've been interpreted. She seems to have done some work on effect sizes too. Now whose cortex is too thick, too thin, or just right?
Excerpting Dr Gernsbacher's latest column isn't fair to it. It's a classic. You have to go here and read the whole thing.
Her latest illuminates a series of results in a trendy area of science, particularly in autism research. That's the measurement of cortical thickness. There have been several published papers, and surely more will come, asserting that autistics' cortices aren't the right thickness at all.
Dr Gernsbacher has put together a big heap of findings about thick and thin cortices, complete with how they've been interpreted. She seems to have done some work on effect sizes too. Now whose cortex is too thick, too thin, or just right?
Excerpting Dr Gernsbacher's latest column isn't fair to it. It's a classic. You have to go here and read the whole thing.
Sunday, January 07, 2007
Mr Doherty's science
According to Canada's eminent autism advocates, anyone who criticizes ABA-based autism interventions is, to put it more politely than they do, ignorant, misguided and reprehensible (you can see this on their flagship website, which I respond to here; see also here). It looks like I'm going to overlook this forcefully-promoted pillar of autism advocacy--that ABA is above science, ethics, and scrutiny--again.
Harold Doherty, an influential and powerful Canadian autism advocate, has helpfully supplied what he sees as definitive evidence that ABA-based interventions are "Most Effective In Educating Autistic Children". This is interesting, because Mr Doherty also supports the view that ABA-based autism interventions are not education at all, but are "medically necessary" treatment.
In fact, right now, we have one set of autism advocates heavily lobbying Parliamentarians (Senators and MPs) to alter the law and mandate ABA-based autism interventions as "medically necessary" for all autistics in Canada. And we have another set of autism advocates going to the Supreme Court of Canada, just down the street, to deny that ABA-based autism interventions are medical treatment or "medically necessary" treatment or medical in any way at all. Those are the autism advocates who support the Wynberg trial decision.
But back to Mr Doherty's science.
Mr Doherty supplies three sources to support the effectiveness of ABA as education for autistic children. One is the MADSEC report. One is a list of papers or reports, and short descriptions of same, provided on Dr Lovaas' website (the Lovaas Institute, you can see this page here; Mr Doherty has copied parts of this into his post). The last is the Auton trial decision.
The MADSEC report bases its conclusions on a total of three ABA controlled trials, Lovaas (1987; and follow-up, McEachin et al., 1993), Birnbrauer and Leach (1993), and Sheinkopf and Siegel (1998). The first two are prospective, while the last is retrospective. Lovaas (1987) and follow-up are dependent on the use of aversives, and therefore represent a treatment which is no longer acceptable. Birnbrauer and Leach have presented a 10-year follow-up, showing that the few children who did well in their study (four of them, none of whom achieved "normal functioning") did not maintain these gains on follow-up (Birnbrauer and Leach, 2006). Sheinkopf and Siegel (1998), the retrospective study, features no autistics who achieved "normal functioning", and also shows no correlation between intensity of treatment and outcome measures. Lovaas (2002) forcefully criticizes this study, and does not accept its validity.
Then there is the list from Dr Lovaas' website, or the parts of it reproduced by Mr Doherty on his blog.
First there is this claim,
Between 1985 and 2005, there were over 500 articles published concerning Applied Behavior Analysis and autism.
I don't dispute this at all. I've read quite a few of these articles. Dr Lovaas does not make any claims as to what these articles have found or their quality. Arguing that quantity of articles is evidence of treatment effectiveness is akin to arguing that the ToM, EF, and/or WCC accounts of autism must be correct because there are hundreds of articles about these theories, or that social skills training must be effective because there is an impressive number of articles about this kind of intervention.
Here's the rest of the list Mr Doherty provides from Dr Lovaas' website:
Lovaas (1987): In multiple post-1987 papers (e.g., Smith & Lovaas, 1998), and in the book Dr Lovaas recommends (Lovaas, 2002), Lovaas and colleagues have underlined the problem of the 10 non-normal-functioning children profiting little from ABA. E.g., their IQs did not increase at all, even though some stayed in their ABA programs for 10 years. Lovaas (2002) has stated that these children must stay in ABA programs for life. There is also the essential role of physical punishment (contingent aversives) in this study, which you can read about here, complete with quotes from Lovaas (1987). A Rett's girl was in Control Group 1, which was not reported until Boyd (1998). The savant abilities of at least one of the experimental group children were extinguished (Epstein et al., 1985; I wrote about this here). Also of interest to Mr Doherty (who has weighed in about high and low functioning in autism, as well as about savant syndrome), five of the autistic children in Control Group 1 (a group which had poor outcomes) were high-functioning. Mr Doherty is a leading autism advocate, so I will assume he knows where that fact is reported.
McEachin, Smith & Lovaas (1993): the follow-up into school ages of Lovaas (1987): See above. One of the "normal functioning" children loses this status.
Jacobson et al. (1998): This paper lacks a factual foundation, because in 46 years of behaviour analytic research in autism, there is no peer-reviewed paper which reports data about the adult outcomes of children who received 3 years of ABA-based intervention between the ages of 2-6. There is no controlled trial of a non-aversive early ABA/IBI that has a published follow-up into school ages (the one presented follow-up presented a failure; Birnbrauer & Leach, 2006). Also, Canada's autism advocates have rejected this level of service (3 years of ABA) as unacceptable, and Dr Lovaas claims that children who do not achieve "normal functioning" by age 7 must stay in ABA programs for their entire lives (Lovaas, 2002).
The NYSDOH report: This report found only four studies (of the 232 looked at) of ABA-based early intensive interventions that met their standards: Lovaas (1987) together with McEachin et al. (1993); Birnbrauer and Leach (1993); Smith et al. (1997); and Sheinkopf and Siegel (1998). All these papers have been described above except Smith et al. (1997), a retrospective study (not a true experimental design) showing very limited results (increase in IQ of 8 points, almost half of which is accounted for by one participant; no "normal functioning").
The Surgeon General's report: The only ABA-based study cited is Lovaas (1987) together with McEachin et al. (1993).
Eikeseth et al. (2002): A ME-Book (Lovaas, 1981) based ABA program is compared to a an unknown intensity of ABA plus a lot of contradictory approaches (this is called "eclectic" treatment). The groups are unmatched, and finish with no significant differences, even though the experimental group had greater gains. The study is for one year only. None of the children achieve "normal functioning".
Howard et al. (2005): This is also a one-year study that compares an ABA-based intensive intervention (for which there is no manual), to "eclectic" treatment (ABA of unknown quantity or quality, plus contradictory approaches), as well as to generic segregated special education. The groups aren't matched. None of the children achieve "normal functioning". The reported "effectiveness" of the ABA-based treatment does not take into account the total failure of two children, who could not continue in ABA, and whose data were discarded.
Sallows & Graupner (2005): The 48% rate of "rapid learners" can only be achieved by combining the control group with the experimental group, producing an uncontrolled trial. The control group performed better than the experimental group. This was not a feature of Lovaas (1987). This paper shows that neither intensity nor quality of ABA-based interventions is relevant to outcomes. Cohen et al. (2006, see below) point out that this study does not have a comparison group. Also, Sallows & Graupner (2005) report using a wide variety of approaches apart from Lovaas ABA, including non-behaviour analytic approaches.
And finally,
Cohen et al. (2006): The limited number of significant differences between outcome measures in the unmatched groups vanishes when non-matched variables are accounted for, with the one exception of classroom placement. Kasari (2006) has pointed out that classroom placement is a measure of parent pressure, rather than of child achievement. The control condition is segregated special education, of less intensity (less hrs/wk) than the ABA treatment.
Mr Doherty's last source is the Auton trial judge, and the Auton trial decision. This is his evidence that randomized assignment, a standard used to protect and benefit all non-autistics, should not apply to autistics. Mr Doherty further adds that there are ethical implications to randomized assignment. This is on the assumption that Lovaas-type ABA is known to be effective and therefore, you cannot deprive any autistics of this treatment.
So let's sum up Mr Doherty's science.
The evidence from the MADSEC report (which did not have to pass peer review) amounts to very little in the absence of an aversive-based study. Only Sheinkopf & Siegel (1998) is left, a retrospective study that Lovaas (2002) strongly objects to. Mr Doherty may be arguing that autistics don't need controlled trials either.
The list of studies and reports from Dr Lovaas' site is selective, and the selected studies are selectively reported. Dr Lovaas does not include all the ABA controlled trials, and he includes only one uncontrolled trial. Sheer number of studies (without reference to their quality, content, relevance, etc.) is not evidence of effectiveness. Using the website of an organization which provides a particular treatment as evidence for the effectiveness of that treatment represents the kind of low standards that autism advocates demand for autistics.
Finally, Mr Doherty uses the Auton trial decision to deny the importance of randomization. This assumes that this decision is scientifically accurate, and is based on peer-reviewed science. That is demonstrably not the case (e.g., see the description of the 1 in 64 study, which was not even in evidence). However, let's accept this for now and look at the evidence in Auton. There were only two controlled trials of ABA-based interventions in the evidence in Auton (in fact, these were the only primary sources reporting data about ABA-based interventions). These would necessarily be the studies being referred to by the trial judge re the importance of randomized assignment. One of them (Lovaas, 1987, and follow-up) is dependent on aversives, and represents a treatment that is currently unacceptable. The other (Smith et al., 1997) is not a true experimental design. It is retrospective, and, as reported above, has weak results which did not support the claims made by the Auton parents. These two studies are insufficient to argue that failing to enroll all autistics in non-aversive ABA programs (on the grounds that their effectiveness has been proven) is unethical.
ABA/IBI does have one existing randomized controlled trial (Smith, Groen & Wynn, 2000, 2001). This is left off Dr Lovaas' page, even though it was conducted at UCLA by behaviour analysts he trained and oversaw, and is of greater importance than Lovaas (1987). Smith, Groen & Wynn (2000, 2001) represents both the scientifc standards that would apply to Mr Doherty and all non-autistics (a randomized controlled trial), and the outcome of a treatment that is not, unlike the treatment reported in Lovaas (1987), dependent on contingent aversives.
A description and criticism of Smith, Groen & Wynn (also, accurate information about the NYSDOH report, and about the importance of randomized assignment) can be found here. I'll add that the reported increase in IQ is confined to the PDD-NOS group. Also, there is a second erratum (Dr Gernsbacher describes one of the published errata, which eliminates the reported result in language) published by the authors to correct another important error in the text (re educational placement).
There is also the Canadian study, Eaves and Ho (2004), which shows no effect of kind or amount of any currently marketed autism treatment in the "critical" 2-5 yr range. About half the children in this study were in ABA programs, and their outcomes did not differ from the children who were not in ABA programs.
I can also suggest comparing the standards, quality, etc., of the reports and sources favoured by Mr Doherty (MADSEC report, Dr Lovaas' website, the Auton trial decision) with the sources which have concluded that when it comes to autism interventions, we do not have sufficient information to decide what is effective for all autistic individuals (e.g., NRC, 2001; Volkmar et al., 2004). The NRC also alluded to the absence of basic ethical considerations in the entire body of autism intervention research.
I agree with Mr Doherty that there has been and no doubt will continue to be a lot of incompetent, non-valid and self-interested criticism of ABA-based interventions, including from behaviour analysts. Indeed, this poverty of criticism is why I wrote The Misbehaviour of Behaviourists, almost three years ago, and also in part why I wrote a series here about aversives. Putting sourced and referenced accurate information on the record is important, so that sweeping statements (e.g., about criticisms of ABA) by influential and powerful leaders like Mr Doherty can be verified against the public record. The record shows that I've been as harsh a critic of incompetent criticisms of ABA-based interventions as any behaviour analyst. This does not mean that accurate criticism of these interventions is non-existent, unnecessary, reprehensible, or impossible.
There is also the problem of ethics, a more important issue than the "effectiveness" issue, which is written about above. It is more important because an apparently effective treatment may be unethical. This has been shown in the area of ABA-based interventions, by the strong and decisive ethical objections, including from behaviour analysts, to Dr Lovaas' other NIH-funded early ABA/IBI--which was also demanded by parents and said to be the only effective treatment for the targeted pathology. My attempt to "point out that ethical standards which have improved the circumstances of all other persons would equally benefit autistics, and would also improve the state of the science", has been met with extreme opposition (including defamation) by autism advocates.
The above does not represent anything more than a brief response to some aspects of Mr Doherty's post. I haven't touched on major issues in the behaviour analytic literature, like diagnostic standards, accounting (or not) for medication, etc. I've only provided tiny, superficial descriptions of studies and reports, though what I wrote can be verified, and they're all studies and reports that I know well (I don't know exactly which 500 studies Dr Lovaas is referring to, but I've probably read a lot of them). I haven't gone into the existence of a successful controlled trial of a non-ABA-based intervention, reported in a peer-reviewed journal. Etc. And I've barely mentioned ethical consideration, which is paramount. I've failed to suggest that Mr Doherty provide sources for the kinds of criticism he considers should not be made. I've forgotten to point out the dramatic contrast between the huge amount of existing autism research and the concurrent poverty of knowledge about autism and about how to help autistic people--a contrast which might have something to do with the effectiveness of autism advocacy. And later, I'll try to post an outline of some of the major bases on which ABA-based interventions can and should be criticized.
The onus is on autism advocates like Mr Doherty to show how discarding basic scientific and ethical standards, the standards which protect and benefit themselves, helps autistics. My own suggestion is that lousy scientific and ethical standards are bad for everyone, including those who, like autism advocates, demand that they be imposed on autistics.
(If this post looks like it was written in pieces by a person busy doing other things, that's because it was; some of the information above has already been provided on this blog, see e.g., here and here , as well as on my website, but autism advocacy involves repeating the same things over and over, which means responding can be tedious).
References:
Birnbrauer J.S., & Leach, D.J. (1993). The Murdoch Early Intervention Program after two years. Behaviour Change, 10, 63-74
Birnbrauer J.S., & Leach, D.J. (2006, June). The Murdoch Early Intervention Program at 10 years. Association for Behavior Analysis Annual Conference abstract. Atlanta, GA.
Boyd, R.D. (1998). Sex as a possible source of group inequivalence in Lovaas (1987). Journal of Autism and Developmental Disorders, 28, 211-214.
Cohen, H., Amerine-Dickins, M., Smith, T. (2006). Early intensive behavioral treatment: Replication of the UCLA model in a community setting. Journal of Developmental and Behavioral Pediatrics, 27, S145-S155.
Eaves, L.C., Ho, H.H. (2004). The very early identification of autism: Outcome to age 4 1/2-5. Journal of Autism and Developmental Disorders, 34, 367-378.
Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2002). Intensive behavioral treatment at school for 4- to 7-year old children with autism: A one-year comparison controlled study. Behavior Modification, 26, 49–68.
Epstein, L.J., Taubman, M.T., & Lovaas, O.I. (1985). Changes in self-stimulatory behaviors with treatment. Journal of Abnormal Child Psychology, 13, 281-294.
Howard, J.S., Sparkman, C.R., Cohen, H.G., Green, G., & Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26, 359–383.
Jacobson, J.W., Mulick, J.A., and Green, G. (1998). Cost-benefit estimates for early intensive behavioral intervention for young children with autism--general model and single state case. Behavioral Interventions, 13, 201-226.
Kasari, C. (2006, June). What are the active ingredients of interventions? International Meeting for Autism Research. Montreal, Canada.
Lovaas, O.I. (1981). Teaching Developmentally Disabled Children: The Me Book. Austin, TX: Pro-Ed.
Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
Lovaas, O.I. (2002). Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.
McEachin, J.J., Smith, T., and Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97, 359-72.
National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. Division of Behavioral and Social Sciences and Education. National Academy Press, Washington, DC.
Sallows, G.O., & Graupner, T.D. (2005). Intensive behavioral treatment for children with autism: Four year outcome and predictors. American Journal on Mental Retardation, 110, 417-438.
Sheinkopf, S.J., & Siegel, B. (1998). Home-based behavioral treatment of young children with autism. Journal of Autism and Developmental Disorders, 28, 15–23.
Smith, T., Eikeseth, S., Klevstrand, M., & Lovaas, O.I. (1997). Intensive behavioral treatment for preschoolers with severe mental retardation and pervasive developmental disorder. American Journal on Mental Retardation 103, 238-249.
Smith, T., Groen, A.D., and Wynn, J.W. (2000, 2001). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 105, 269-85. Erratum in American Journal on Mental Retardation, 105, 508. Erratum in American Journal on Mental Retardation, 106, 208.
Smith, T., Lovaas, O.I. (1998). Intensive and early behavioral intervention in autism: The UCLA young autism project. Infants and Young Children, 10, 67-78.
Volkmar, F.R., Lord, C., Bailey, A., Schultz, R.T., & Klin, A. (2004). Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135-170.
Harold Doherty, an influential and powerful Canadian autism advocate, has helpfully supplied what he sees as definitive evidence that ABA-based interventions are "Most Effective In Educating Autistic Children". This is interesting, because Mr Doherty also supports the view that ABA-based autism interventions are not education at all, but are "medically necessary" treatment.
In fact, right now, we have one set of autism advocates heavily lobbying Parliamentarians (Senators and MPs) to alter the law and mandate ABA-based autism interventions as "medically necessary" for all autistics in Canada. And we have another set of autism advocates going to the Supreme Court of Canada, just down the street, to deny that ABA-based autism interventions are medical treatment or "medically necessary" treatment or medical in any way at all. Those are the autism advocates who support the Wynberg trial decision.
But back to Mr Doherty's science.
Mr Doherty supplies three sources to support the effectiveness of ABA as education for autistic children. One is the MADSEC report. One is a list of papers or reports, and short descriptions of same, provided on Dr Lovaas' website (the Lovaas Institute, you can see this page here; Mr Doherty has copied parts of this into his post). The last is the Auton trial decision.
The MADSEC report bases its conclusions on a total of three ABA controlled trials, Lovaas (1987; and follow-up, McEachin et al., 1993), Birnbrauer and Leach (1993), and Sheinkopf and Siegel (1998). The first two are prospective, while the last is retrospective. Lovaas (1987) and follow-up are dependent on the use of aversives, and therefore represent a treatment which is no longer acceptable. Birnbrauer and Leach have presented a 10-year follow-up, showing that the few children who did well in their study (four of them, none of whom achieved "normal functioning") did not maintain these gains on follow-up (Birnbrauer and Leach, 2006). Sheinkopf and Siegel (1998), the retrospective study, features no autistics who achieved "normal functioning", and also shows no correlation between intensity of treatment and outcome measures. Lovaas (2002) forcefully criticizes this study, and does not accept its validity.
Then there is the list from Dr Lovaas' website, or the parts of it reproduced by Mr Doherty on his blog.
First there is this claim,
Between 1985 and 2005, there were over 500 articles published concerning Applied Behavior Analysis and autism.
I don't dispute this at all. I've read quite a few of these articles. Dr Lovaas does not make any claims as to what these articles have found or their quality. Arguing that quantity of articles is evidence of treatment effectiveness is akin to arguing that the ToM, EF, and/or WCC accounts of autism must be correct because there are hundreds of articles about these theories, or that social skills training must be effective because there is an impressive number of articles about this kind of intervention.
Here's the rest of the list Mr Doherty provides from Dr Lovaas' website:
Lovaas (1987): In multiple post-1987 papers (e.g., Smith & Lovaas, 1998), and in the book Dr Lovaas recommends (Lovaas, 2002), Lovaas and colleagues have underlined the problem of the 10 non-normal-functioning children profiting little from ABA. E.g., their IQs did not increase at all, even though some stayed in their ABA programs for 10 years. Lovaas (2002) has stated that these children must stay in ABA programs for life. There is also the essential role of physical punishment (contingent aversives) in this study, which you can read about here, complete with quotes from Lovaas (1987). A Rett's girl was in Control Group 1, which was not reported until Boyd (1998). The savant abilities of at least one of the experimental group children were extinguished (Epstein et al., 1985; I wrote about this here). Also of interest to Mr Doherty (who has weighed in about high and low functioning in autism, as well as about savant syndrome), five of the autistic children in Control Group 1 (a group which had poor outcomes) were high-functioning. Mr Doherty is a leading autism advocate, so I will assume he knows where that fact is reported.
McEachin, Smith & Lovaas (1993): the follow-up into school ages of Lovaas (1987): See above. One of the "normal functioning" children loses this status.
Jacobson et al. (1998): This paper lacks a factual foundation, because in 46 years of behaviour analytic research in autism, there is no peer-reviewed paper which reports data about the adult outcomes of children who received 3 years of ABA-based intervention between the ages of 2-6. There is no controlled trial of a non-aversive early ABA/IBI that has a published follow-up into school ages (the one presented follow-up presented a failure; Birnbrauer & Leach, 2006). Also, Canada's autism advocates have rejected this level of service (3 years of ABA) as unacceptable, and Dr Lovaas claims that children who do not achieve "normal functioning" by age 7 must stay in ABA programs for their entire lives (Lovaas, 2002).
The NYSDOH report: This report found only four studies (of the 232 looked at) of ABA-based early intensive interventions that met their standards: Lovaas (1987) together with McEachin et al. (1993); Birnbrauer and Leach (1993); Smith et al. (1997); and Sheinkopf and Siegel (1998). All these papers have been described above except Smith et al. (1997), a retrospective study (not a true experimental design) showing very limited results (increase in IQ of 8 points, almost half of which is accounted for by one participant; no "normal functioning").
The Surgeon General's report: The only ABA-based study cited is Lovaas (1987) together with McEachin et al. (1993).
Eikeseth et al. (2002): A ME-Book (Lovaas, 1981) based ABA program is compared to a an unknown intensity of ABA plus a lot of contradictory approaches (this is called "eclectic" treatment). The groups are unmatched, and finish with no significant differences, even though the experimental group had greater gains. The study is for one year only. None of the children achieve "normal functioning".
Howard et al. (2005): This is also a one-year study that compares an ABA-based intensive intervention (for which there is no manual), to "eclectic" treatment (ABA of unknown quantity or quality, plus contradictory approaches), as well as to generic segregated special education. The groups aren't matched. None of the children achieve "normal functioning". The reported "effectiveness" of the ABA-based treatment does not take into account the total failure of two children, who could not continue in ABA, and whose data were discarded.
Sallows & Graupner (2005): The 48% rate of "rapid learners" can only be achieved by combining the control group with the experimental group, producing an uncontrolled trial. The control group performed better than the experimental group. This was not a feature of Lovaas (1987). This paper shows that neither intensity nor quality of ABA-based interventions is relevant to outcomes. Cohen et al. (2006, see below) point out that this study does not have a comparison group. Also, Sallows & Graupner (2005) report using a wide variety of approaches apart from Lovaas ABA, including non-behaviour analytic approaches.
And finally,
Cohen et al. (2006): The limited number of significant differences between outcome measures in the unmatched groups vanishes when non-matched variables are accounted for, with the one exception of classroom placement. Kasari (2006) has pointed out that classroom placement is a measure of parent pressure, rather than of child achievement. The control condition is segregated special education, of less intensity (less hrs/wk) than the ABA treatment.
Mr Doherty's last source is the Auton trial judge, and the Auton trial decision. This is his evidence that randomized assignment, a standard used to protect and benefit all non-autistics, should not apply to autistics. Mr Doherty further adds that there are ethical implications to randomized assignment. This is on the assumption that Lovaas-type ABA is known to be effective and therefore, you cannot deprive any autistics of this treatment.
So let's sum up Mr Doherty's science.
The evidence from the MADSEC report (which did not have to pass peer review) amounts to very little in the absence of an aversive-based study. Only Sheinkopf & Siegel (1998) is left, a retrospective study that Lovaas (2002) strongly objects to. Mr Doherty may be arguing that autistics don't need controlled trials either.
The list of studies and reports from Dr Lovaas' site is selective, and the selected studies are selectively reported. Dr Lovaas does not include all the ABA controlled trials, and he includes only one uncontrolled trial. Sheer number of studies (without reference to their quality, content, relevance, etc.) is not evidence of effectiveness. Using the website of an organization which provides a particular treatment as evidence for the effectiveness of that treatment represents the kind of low standards that autism advocates demand for autistics.
Finally, Mr Doherty uses the Auton trial decision to deny the importance of randomization. This assumes that this decision is scientifically accurate, and is based on peer-reviewed science. That is demonstrably not the case (e.g., see the description of the 1 in 64 study, which was not even in evidence). However, let's accept this for now and look at the evidence in Auton. There were only two controlled trials of ABA-based interventions in the evidence in Auton (in fact, these were the only primary sources reporting data about ABA-based interventions). These would necessarily be the studies being referred to by the trial judge re the importance of randomized assignment. One of them (Lovaas, 1987, and follow-up) is dependent on aversives, and represents a treatment that is currently unacceptable. The other (Smith et al., 1997) is not a true experimental design. It is retrospective, and, as reported above, has weak results which did not support the claims made by the Auton parents. These two studies are insufficient to argue that failing to enroll all autistics in non-aversive ABA programs (on the grounds that their effectiveness has been proven) is unethical.
ABA/IBI does have one existing randomized controlled trial (Smith, Groen & Wynn, 2000, 2001). This is left off Dr Lovaas' page, even though it was conducted at UCLA by behaviour analysts he trained and oversaw, and is of greater importance than Lovaas (1987). Smith, Groen & Wynn (2000, 2001) represents both the scientifc standards that would apply to Mr Doherty and all non-autistics (a randomized controlled trial), and the outcome of a treatment that is not, unlike the treatment reported in Lovaas (1987), dependent on contingent aversives.
A description and criticism of Smith, Groen & Wynn (also, accurate information about the NYSDOH report, and about the importance of randomized assignment) can be found here. I'll add that the reported increase in IQ is confined to the PDD-NOS group. Also, there is a second erratum (Dr Gernsbacher describes one of the published errata, which eliminates the reported result in language) published by the authors to correct another important error in the text (re educational placement).
There is also the Canadian study, Eaves and Ho (2004), which shows no effect of kind or amount of any currently marketed autism treatment in the "critical" 2-5 yr range. About half the children in this study were in ABA programs, and their outcomes did not differ from the children who were not in ABA programs.
I can also suggest comparing the standards, quality, etc., of the reports and sources favoured by Mr Doherty (MADSEC report, Dr Lovaas' website, the Auton trial decision) with the sources which have concluded that when it comes to autism interventions, we do not have sufficient information to decide what is effective for all autistic individuals (e.g., NRC, 2001; Volkmar et al., 2004). The NRC also alluded to the absence of basic ethical considerations in the entire body of autism intervention research.
I agree with Mr Doherty that there has been and no doubt will continue to be a lot of incompetent, non-valid and self-interested criticism of ABA-based interventions, including from behaviour analysts. Indeed, this poverty of criticism is why I wrote The Misbehaviour of Behaviourists, almost three years ago, and also in part why I wrote a series here about aversives. Putting sourced and referenced accurate information on the record is important, so that sweeping statements (e.g., about criticisms of ABA) by influential and powerful leaders like Mr Doherty can be verified against the public record. The record shows that I've been as harsh a critic of incompetent criticisms of ABA-based interventions as any behaviour analyst. This does not mean that accurate criticism of these interventions is non-existent, unnecessary, reprehensible, or impossible.
There is also the problem of ethics, a more important issue than the "effectiveness" issue, which is written about above. It is more important because an apparently effective treatment may be unethical. This has been shown in the area of ABA-based interventions, by the strong and decisive ethical objections, including from behaviour analysts, to Dr Lovaas' other NIH-funded early ABA/IBI--which was also demanded by parents and said to be the only effective treatment for the targeted pathology. My attempt to "point out that ethical standards which have improved the circumstances of all other persons would equally benefit autistics, and would also improve the state of the science", has been met with extreme opposition (including defamation) by autism advocates.
The above does not represent anything more than a brief response to some aspects of Mr Doherty's post. I haven't touched on major issues in the behaviour analytic literature, like diagnostic standards, accounting (or not) for medication, etc. I've only provided tiny, superficial descriptions of studies and reports, though what I wrote can be verified, and they're all studies and reports that I know well (I don't know exactly which 500 studies Dr Lovaas is referring to, but I've probably read a lot of them). I haven't gone into the existence of a successful controlled trial of a non-ABA-based intervention, reported in a peer-reviewed journal. Etc. And I've barely mentioned ethical consideration, which is paramount. I've failed to suggest that Mr Doherty provide sources for the kinds of criticism he considers should not be made. I've forgotten to point out the dramatic contrast between the huge amount of existing autism research and the concurrent poverty of knowledge about autism and about how to help autistic people--a contrast which might have something to do with the effectiveness of autism advocacy. And later, I'll try to post an outline of some of the major bases on which ABA-based interventions can and should be criticized.
The onus is on autism advocates like Mr Doherty to show how discarding basic scientific and ethical standards, the standards which protect and benefit themselves, helps autistics. My own suggestion is that lousy scientific and ethical standards are bad for everyone, including those who, like autism advocates, demand that they be imposed on autistics.
(If this post looks like it was written in pieces by a person busy doing other things, that's because it was; some of the information above has already been provided on this blog, see e.g., here and here , as well as on my website, but autism advocacy involves repeating the same things over and over, which means responding can be tedious).
References:
Birnbrauer J.S., & Leach, D.J. (1993). The Murdoch Early Intervention Program after two years. Behaviour Change, 10, 63-74
Birnbrauer J.S., & Leach, D.J. (2006, June). The Murdoch Early Intervention Program at 10 years. Association for Behavior Analysis Annual Conference abstract. Atlanta, GA.
Boyd, R.D. (1998). Sex as a possible source of group inequivalence in Lovaas (1987). Journal of Autism and Developmental Disorders, 28, 211-214.
Cohen, H., Amerine-Dickins, M., Smith, T. (2006). Early intensive behavioral treatment: Replication of the UCLA model in a community setting. Journal of Developmental and Behavioral Pediatrics, 27, S145-S155.
Eaves, L.C., Ho, H.H. (2004). The very early identification of autism: Outcome to age 4 1/2-5. Journal of Autism and Developmental Disorders, 34, 367-378.
Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2002). Intensive behavioral treatment at school for 4- to 7-year old children with autism: A one-year comparison controlled study. Behavior Modification, 26, 49–68.
Epstein, L.J., Taubman, M.T., & Lovaas, O.I. (1985). Changes in self-stimulatory behaviors with treatment. Journal of Abnormal Child Psychology, 13, 281-294.
Howard, J.S., Sparkman, C.R., Cohen, H.G., Green, G., & Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26, 359–383.
Jacobson, J.W., Mulick, J.A., and Green, G. (1998). Cost-benefit estimates for early intensive behavioral intervention for young children with autism--general model and single state case. Behavioral Interventions, 13, 201-226.
Kasari, C. (2006, June). What are the active ingredients of interventions? International Meeting for Autism Research. Montreal, Canada.
Lovaas, O.I. (1981). Teaching Developmentally Disabled Children: The Me Book. Austin, TX: Pro-Ed.
Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
Lovaas, O.I. (2002). Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed.
McEachin, J.J., Smith, T., and Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97, 359-72.
National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. Division of Behavioral and Social Sciences and Education. National Academy Press, Washington, DC.
Sallows, G.O., & Graupner, T.D. (2005). Intensive behavioral treatment for children with autism: Four year outcome and predictors. American Journal on Mental Retardation, 110, 417-438.
Sheinkopf, S.J., & Siegel, B. (1998). Home-based behavioral treatment of young children with autism. Journal of Autism and Developmental Disorders, 28, 15–23.
Smith, T., Eikeseth, S., Klevstrand, M., & Lovaas, O.I. (1997). Intensive behavioral treatment for preschoolers with severe mental retardation and pervasive developmental disorder. American Journal on Mental Retardation 103, 238-249.
Smith, T., Groen, A.D., and Wynn, J.W. (2000, 2001). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 105, 269-85. Erratum in American Journal on Mental Retardation, 105, 508. Erratum in American Journal on Mental Retardation, 106, 208.
Smith, T., Lovaas, O.I. (1998). Intensive and early behavioral intervention in autism: The UCLA young autism project. Infants and Young Children, 10, 67-78.
Volkmar, F.R., Lord, C., Bailey, A., Schultz, R.T., & Klin, A. (2004). Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135-170.
Tuesday, January 02, 2007
How human rights disappear
Last November, New Scientist published a short article called Ear implant success sparks culture war. This is from the opening paragraph:
A spate of new studies has shown that profoundly deaf babies who receive cochlear implants in their first year of life develop language and speech skills remarkably close to those of hearing children. Many of the children even learn to sing passably well and function almost flawlessly in the hearing world.
This is regardless that, as the New Scientist points out eventually,
Even the most technically advanced implant provides the brain with only an extremely coarse approximation of the signal provided by a healthy ear.
These findings are important, because surgical implantation in the second or third years of life, as was more usually done, has not been so successful:
Until recently there was no good evidence that implants routinely improved children's chances of developing normal speech and language, raising fears that those fitted with implants would be stuck in a no-man's land - part of neither the hearing world nor the deaf one.
Earlier this year, through a landmark legal decision, sign language became a de facto official language in Canada. But in the New Scientist article, "normal" language is defined as excluding sign language, which is like excluding any other language (e.g., French, Cree) from being "normal" language. The article goes on to say:
That concern may be put to rest by the new studies. In one, presented last week at the Bionic Ear Institute in Melbourne, Australia, a team led by Richard Dowell at the University of Melbourne showed that 11 profoundly deaf children who received cochlear implants before the age of 1 had entirely normal language development at least up to age 4 to 5. Language skills were assessed using a battery of tests, including routine tests of comprehension and expression and observing at what age they started different types of babbling and using key words.
Their language development was also superior to a further 36 children who had been implanted at age 1 or 2, suggesting that the earlier the implant is fitted the better. "The kids still don't have normal hearing, but they have normal language. They can have a conversation, make a joke, lie, tease - all those normal things that 4 or 5-year-olds do," says team member Shani Dettman.
Again, "normal" language is defined as excluding sign language. Then there is the implication that native signing deaf children can't have conversations, make jokes, etc. Only children who have "normal" language (meaning, not sign language) can do these things. The New Scientist goes on to quote a researcher, Ann Geers, who was involved in another study reporting the effectiveness of very early implantation:
Geers agrees deaf culture may be under threat, but says "there is no hostility here. People are doing this so that deaf people can live in the hearing world, marry who they like, and work where they like, and so that hearing parents can have their children as part of their culture. But it must seem like genocide to the deaf."
Now deaf people who remain deaf are not only considered to lack "normal" language, their basic human rights have vanished. They can no longer marry who they like or work where they like. That is, they lack some of the very basic human rights that benefit and protect non-deaf people and which non-deaf people can take for granted. "Hostility" is beside the point.
Setting aside arguments about culture, this is a demonstration of how human rights disappear. A group of people has their essential human differences pathologized. Their basic human qualities are then denied--because their differences have become unacceptable. A treatment is then promoted that promises to eradicate their pathology and make them normal, or at least make them appear to be as normal as possible. When a human difference is classified as a pathology and then declared treatable, those having this difference--in this case, deaf people--no longer have rights as themselves.
This is how the human rights of homosexuals would have disappeared if Ivar Lovaas' NIH-funded Feminine Boy Project had not been challenged as to its ethics--versus its effectiveness--by behaviour analysts and others (some information about the UCLA FBP is here and here).
According to Canada's autism advocates, criticizing ABA programs is reprehensible. But if no one had criticized the apparently "effective" FBP, the world would look very different right now. As I've written elsewhere, we would not have recently had a political debate resulting in the acceptance of same-sex marriage in Canada. We would instead have desperate parents using the Canadian Charter of Rights and Freedoms--our highest law--to demand that governments fund "medically necessary" Lovaas homosexuality treatment. We would have all our national political parties, including our federal government, supporting "homosexuality advocates" in their demands for a "National Homosexuality Strategy" with an emphasis on surveillance, early diagnosis and treatment of this treatable--provided treatment starts early enough, and is sufficiently intensive--pathology.
(You can find an excellent discussion about cochlear implants and the rights of deaf people in this Canadian Medical Association Journal article.)
A spate of new studies has shown that profoundly deaf babies who receive cochlear implants in their first year of life develop language and speech skills remarkably close to those of hearing children. Many of the children even learn to sing passably well and function almost flawlessly in the hearing world.
This is regardless that, as the New Scientist points out eventually,
Even the most technically advanced implant provides the brain with only an extremely coarse approximation of the signal provided by a healthy ear.
These findings are important, because surgical implantation in the second or third years of life, as was more usually done, has not been so successful:
Until recently there was no good evidence that implants routinely improved children's chances of developing normal speech and language, raising fears that those fitted with implants would be stuck in a no-man's land - part of neither the hearing world nor the deaf one.
Earlier this year, through a landmark legal decision, sign language became a de facto official language in Canada. But in the New Scientist article, "normal" language is defined as excluding sign language, which is like excluding any other language (e.g., French, Cree) from being "normal" language. The article goes on to say:
That concern may be put to rest by the new studies. In one, presented last week at the Bionic Ear Institute in Melbourne, Australia, a team led by Richard Dowell at the University of Melbourne showed that 11 profoundly deaf children who received cochlear implants before the age of 1 had entirely normal language development at least up to age 4 to 5. Language skills were assessed using a battery of tests, including routine tests of comprehension and expression and observing at what age they started different types of babbling and using key words.
Their language development was also superior to a further 36 children who had been implanted at age 1 or 2, suggesting that the earlier the implant is fitted the better. "The kids still don't have normal hearing, but they have normal language. They can have a conversation, make a joke, lie, tease - all those normal things that 4 or 5-year-olds do," says team member Shani Dettman.
Again, "normal" language is defined as excluding sign language. Then there is the implication that native signing deaf children can't have conversations, make jokes, etc. Only children who have "normal" language (meaning, not sign language) can do these things. The New Scientist goes on to quote a researcher, Ann Geers, who was involved in another study reporting the effectiveness of very early implantation:
Geers agrees deaf culture may be under threat, but says "there is no hostility here. People are doing this so that deaf people can live in the hearing world, marry who they like, and work where they like, and so that hearing parents can have their children as part of their culture. But it must seem like genocide to the deaf."
Now deaf people who remain deaf are not only considered to lack "normal" language, their basic human rights have vanished. They can no longer marry who they like or work where they like. That is, they lack some of the very basic human rights that benefit and protect non-deaf people and which non-deaf people can take for granted. "Hostility" is beside the point.
Setting aside arguments about culture, this is a demonstration of how human rights disappear. A group of people has their essential human differences pathologized. Their basic human qualities are then denied--because their differences have become unacceptable. A treatment is then promoted that promises to eradicate their pathology and make them normal, or at least make them appear to be as normal as possible. When a human difference is classified as a pathology and then declared treatable, those having this difference--in this case, deaf people--no longer have rights as themselves.
This is how the human rights of homosexuals would have disappeared if Ivar Lovaas' NIH-funded Feminine Boy Project had not been challenged as to its ethics--versus its effectiveness--by behaviour analysts and others (some information about the UCLA FBP is here and here).
According to Canada's autism advocates, criticizing ABA programs is reprehensible. But if no one had criticized the apparently "effective" FBP, the world would look very different right now. As I've written elsewhere, we would not have recently had a political debate resulting in the acceptance of same-sex marriage in Canada. We would instead have desperate parents using the Canadian Charter of Rights and Freedoms--our highest law--to demand that governments fund "medically necessary" Lovaas homosexuality treatment. We would have all our national political parties, including our federal government, supporting "homosexuality advocates" in their demands for a "National Homosexuality Strategy" with an emphasis on surveillance, early diagnosis and treatment of this treatable--provided treatment starts early enough, and is sufficiently intensive--pathology.
(You can find an excellent discussion about cochlear implants and the rights of deaf people in this Canadian Medical Association Journal article.)
Sunday, December 24, 2006
Verbatim: Peter Szatmari's amazement
Peter Szatmari is the best known and most influential of Canada's autism researchers. His published papers are always worth reading, regardless of whether you agree or disagree with his general direction. I'm bending the rules of Verbatim slightly and quoting from Dr Szatmari's 2004 book, which is a popular rather than scholarly book. It is, however, his only published book to date, and while Dr Szatmari is not a cognitive scientist, here he is musing about autistic cognitive processes. These are two excerpts from the same chapter. They are deliberately chosen to circumvent, as much as is possible in this book, Dr Szatmari's preponderant and constant reminders that, in his view, the autistic abilities he exclaims about are only the pathological side-effects of our overwhelming and devastating impairments. Justin is a 30 year old autistic adult, one of the first autistics Dr Szatmari ever met.
Justin is especially fascinated with thunderstorms. Every time there is a thunderstorm he takes his tape machine outside and records the sounds. Afterward he plays the tapes to amuse himself and to help him fall asleep. He also likes to buy commercially produced weather tapes and will add them to his collection of homemade tapes. Once, after he bought a couple of tapes, he quickly noticed the same thunderstorm was on both of them. He was not a little put out at the discovery. "How dare they try to pull a fast one on me?" he said indignantly.
I once asked him why he recorded thunderstorms. "They all sound the same, don't they?"
Justin looked at me as if I were the stupidest person on earth. "No," he said. "They all sound quite different." But he did not elaborate.
I asked him to bring some tapes to our next appointment, and we spent the hour listening to them. He was right; all storms do sound different. He pointed out the variation in the peals of thunder. There were differences in volume, of course, but I had never heard the wide range of pitch and rhythm. How amazing!
[...]
It is the ability to see, hear, and play with the intimate architecture of the world that is truly amazing. The rest of us can see this architecture too if we make a conscious decision to look. But we are rarely drawn to it as a natural affinity. We have to work at it. We have to turn away from language and from social relationships to see it. People with autism gravitate to it effortlessly.
Reference:
Szatmari, P. (2004). A mind apart: Understanding children with autism and Asperger syndrome. New York: Guilford.
Justin is especially fascinated with thunderstorms. Every time there is a thunderstorm he takes his tape machine outside and records the sounds. Afterward he plays the tapes to amuse himself and to help him fall asleep. He also likes to buy commercially produced weather tapes and will add them to his collection of homemade tapes. Once, after he bought a couple of tapes, he quickly noticed the same thunderstorm was on both of them. He was not a little put out at the discovery. "How dare they try to pull a fast one on me?" he said indignantly.
I once asked him why he recorded thunderstorms. "They all sound the same, don't they?"
Justin looked at me as if I were the stupidest person on earth. "No," he said. "They all sound quite different." But he did not elaborate.
I asked him to bring some tapes to our next appointment, and we spent the hour listening to them. He was right; all storms do sound different. He pointed out the variation in the peals of thunder. There were differences in volume, of course, but I had never heard the wide range of pitch and rhythm. How amazing!
[...]
It is the ability to see, hear, and play with the intimate architecture of the world that is truly amazing. The rest of us can see this architecture too if we make a conscious decision to look. But we are rarely drawn to it as a natural affinity. We have to work at it. We have to turn away from language and from social relationships to see it. People with autism gravitate to it effortlessly.
Reference:
Szatmari, P. (2004). A mind apart: Understanding children with autism and Asperger syndrome. New York: Guilford.
Saturday, December 23, 2006
When not being diagnosed is just fine
There have been a few posts lately about self-diagnosis. Earlier this year, the issue of diagnosis became the subject of a petition, when demands that are never made of non-autistics were made of autistics. I'm a big fan of autistics getting formally diagnosed, but I have trouble with double standards. I posted a comment about this over on the TMoB board. I'm going to repeat a part of it here, to show another aspect of this issue that is usually overlooked. Sometimes, an autistic adult who doesn't have formal a diagnosis is not considered suspect in any way and is perfectly uncontroversial. The autism advocate featured in the excerpt below, David Vardy, was until recently Autism Society Canada's 1st Vice President, and continues to be a Director of ASC's Newfoundland affiliate.
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I also wonder why parents aren't questioned, when they fail to get a prompt diagnosis for their autistic child. A classic example is in the well-known "autism is worse than cancer" Senate testimony from then-ASC 1st Vice President David Vardy. At the time he testified, Mr Vardy's autistic son Adam was 31 years old. This means he was born in 1972, which is 11 years after I was born.
The gist of Mr Vardy's testimony is that having an autistic son is horrible, and has destroyed his and his family's life. And of course he testified that it would be better if autism were fatal.
According to his testimony, Mr Vardy didn't notice much different about his autistic son at all, until he was 15. Then, he testifies (this would have happened in 1987, seven years after autism first appeared in the DSM, and the year the DSMIII-R came out),
We had no choice but to have him taken to a hospital, where he was admitted and diagnosed incorrectly with bipolar disorder. That was because our medical system did not have the capacity to diagnose autism at the time. It is not much better today.
Mr Vardy goes on to recount multiple wrong diagnoses, and adds,
Medical practitioners regarded Adam as a puzzle. Psychiatrists did not consider autism to be a possible diagnosis.
Then Mr Vardy diagnoses his own son:
Up to this point in time, we had not received a concrete diagnosis for Adam. After his hospitalization, it was suggested by an adolescent counsellor that a mild variety of autism could be the problem. We investigated the literature in this area. We read the medical journals, and we came to the conclusion that autism was the problem. The psychiatrist at the time did not concur with this.
And:
Other professionals, such as a speech language pathologist, did [concur that Adam was autistic]. We reached a point where Adam became so reluctant to see doctors that we never did get a formal diagnosis.
So Mr Vardy's son Adam is an undiagnosed autistic. Neither an adolescent counsellor nor an SLP is qualified to diagnose autism.
Yet Mr Vardy was 1st Vice President of ASC, and was considered an autism expert by the Canadian Senate. Not only did he not prove his son was autistic, he could not do this.
Oddly, there was no outcry from the powerful and influential leaders of the Canadian "autism community".
You can imagine what would happen if this story was told from Adam Vardy's point of view, not David Vardy's. Adam becomes "self-diagnosed", there is certainty that he is an imposter and fraud (and surely a malingerer) because his parents did not notice anything when he was young, professionals never considered or actually denied that he was autistic, etc.
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------------------------------------------------------------------------------------
I also wonder why parents aren't questioned, when they fail to get a prompt diagnosis for their autistic child. A classic example is in the well-known "autism is worse than cancer" Senate testimony from then-ASC 1st Vice President David Vardy. At the time he testified, Mr Vardy's autistic son Adam was 31 years old. This means he was born in 1972, which is 11 years after I was born.
The gist of Mr Vardy's testimony is that having an autistic son is horrible, and has destroyed his and his family's life. And of course he testified that it would be better if autism were fatal.
According to his testimony, Mr Vardy didn't notice much different about his autistic son at all, until he was 15. Then, he testifies (this would have happened in 1987, seven years after autism first appeared in the DSM, and the year the DSMIII-R came out),
We had no choice but to have him taken to a hospital, where he was admitted and diagnosed incorrectly with bipolar disorder. That was because our medical system did not have the capacity to diagnose autism at the time. It is not much better today.
Mr Vardy goes on to recount multiple wrong diagnoses, and adds,
Medical practitioners regarded Adam as a puzzle. Psychiatrists did not consider autism to be a possible diagnosis.
Then Mr Vardy diagnoses his own son:
Up to this point in time, we had not received a concrete diagnosis for Adam. After his hospitalization, it was suggested by an adolescent counsellor that a mild variety of autism could be the problem. We investigated the literature in this area. We read the medical journals, and we came to the conclusion that autism was the problem. The psychiatrist at the time did not concur with this.
And:
Other professionals, such as a speech language pathologist, did [concur that Adam was autistic]. We reached a point where Adam became so reluctant to see doctors that we never did get a formal diagnosis.
So Mr Vardy's son Adam is an undiagnosed autistic. Neither an adolescent counsellor nor an SLP is qualified to diagnose autism.
Yet Mr Vardy was 1st Vice President of ASC, and was considered an autism expert by the Canadian Senate. Not only did he not prove his son was autistic, he could not do this.
Oddly, there was no outcry from the powerful and influential leaders of the Canadian "autism community".
You can imagine what would happen if this story was told from Adam Vardy's point of view, not David Vardy's. Adam becomes "self-diagnosed", there is certainty that he is an imposter and fraud (and surely a malingerer) because his parents did not notice anything when he was young, professionals never considered or actually denied that he was autistic, etc.
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Thursday, December 21, 2006
The Senate's thematic study on autism
As I pointed out here a bit earlier, the Canadian Senate Standing Committee on Social Affairs, Science and Technology made this statement in a report they issued in 2005:
In future, we hope to have the opportunity to undertake a thematic study on autism. Meanwhile, we advocate a fuller debate among all stakeholders. In particular, the Committee believes that persons living with autism must be recognized as full and equal partners in the discussion.
That "thematic study on autism" has now taken place in a series of hearings, with a report due in May, 2007. I tried to ask for two things in these hearings, and indeed, some themes emerged.
Previous hearings were used by autism advocates as a platform from which to denigrate and dehumanize autistics (see this and this). I asked the Senators to apply at least minimal standards to their autism hearings, so that autistics would not again be dehumanized and therefore harmed.
This was totally rejected. I was told that all views of autistic people were welcome, no matter how dehumanizing. There was no indication that this Committee saw dehumanization as being harmful to autistics. Perhaps they had already decided that if autistics are dehumanized, this is because we are in fact less than human. In any case, even a superficial glance through the transcripts in the Senate autism hearings shows that living, healthy, present autistics have been described, without protest, as bleeding to death, kidnapped, and dead. Autistics have been repeatedly portrayed as just naturally being violent because we're autistic, as appalling burdens, etc.
Unsurprisingly, in the final hearing on December 8 (a hearing supposedly dedicated to autism research), one Senator asked a non-autistic witness about the problem (which made this Senator "sadder than I already have been") that autistics ("those who suffer from this disability") don't feel anything. We don't experience happiness or pain. This was a Senator asking a non-autistic about an assumption the Senator had made--that autistics aren't sentient, or human.
The second thing I asked was for the Senators to live up to what they wrote in 2005, and to include autistics in these hearings as "full and equal partners". Instead, the Senators banned autistics from the most important hearing of the series, the big round table meeting about autism research.
I spent some time trying to persuade the Senators that they should reconsider. This also was totally rejected.
Their decision to ban autistics from discussions and decisions about autism research, like their decision that the dehumanization of autistics is welcome, is a major consequence of these hearings. Autistics have been banned before. Efforts were made to change this. Now the Senate has weighed in and showed all Canadians that autistics really should be banned. And if we're dehumanized too, that's also just fine. That's how autistics should be treated in Canada.
Canada's Senators have told autistics to stay away from autism research, to forget about even considering that we have anything to say about our future (a future which is overwhelmingly determined by autism research), and to leave the major decisions about us in the hands of non-autistics. They've told autistics we should never, ever question this.
And the Senators refuse to explain why autistics were banned. Senator Art Eggleton's office promised to send a letter with an explanation. This promise was no less empty than the Senators' promise to recognize autistics as "full and equal partners".
According to Senator Eggleton, speaking at the autistic-free round table about autism research, the Senators asked Rémi Quirion from the Canadian Institutes of Health Research to decide who should attend this meeting. The CIHR, and Dr Quirion himself, have previously united with Autism Society Canada, Autism Speaks (NAAR, at the time), the Canadian Autism Intervention Research Network and others, to ban autistics from all discussions and decisions about autism research in Canada.
Dr Quirion and the CIHR, and ASC, Autism Speaks and CAIRN, have never apologized for this, or indicated that they may have made an error, or explained why they decided to ban autistics. Instead, they continue to maintain that while autistics deserve to be banned, we don't deserve an explanation. Canada's Senators have just repeated the same process and made the same decisions, with all their considerable authority: autistics should be banned, and we aren't worth the bother of an explanation.
Meanwhile, non-autistic parents are as always invited, always considered expert, always welcome, and always taken very seriously. It would be unthinkable to ban non-autistic parents. This would make headlines. There would be demonstrations. There would be outraged editorials. Same thing if non-autistic parents were dehumanized, or portrayed as just naturally being violent, as autistics have been in these hearings. Heads would roll. You would never hear the end of it. Etc.
At the December 8 meeting, Senator Eggleton, the Committee Chairperson, indicated sternly that the Senators had invited quite enough autistics already. Clearly, having us at the round table with the 16 invited non-autistics (parents, parent-run organizations, family members, and researchers) would have been downright excessive, and surely outlandish, by the standards of our Senators.
Of the 48 witnesses who appeared in the Senate autism hearings, 5 were autistics (most hand-picked by organizations overwhelmingly run by and for non-autistics), and 43 were non-autistics.
Of the 12 sessions, non-autistics appeared in 10, and autistics appeared in 2. Non-autistic parents and/or parent-run groups (16 witnesses) appeared in 7 sessions. None of the many groups which appeared had any meaningful participation by autistics, and most had none at all. Groups that actively ban autistics, including by denying that autistics who communicate are autistic, were welcomed with open arms (e.g., Autism Speaks, the CIHR, CAIRN, FEAT), as was ASC, which has recently banned autistics, and having been required to appear to include autistics, has built a supervised autistic ghetto.
Of the 48 witnesses, ASC had at least 8 witnesses, CAIRN had at least 6 witnesses, FEAT had at least 4, and Autism Speaks had at least 2. The CIHR appreared, as did the Office for Disability Issues and Health Canada--all government organizations that have banned autistics, and of course, the CIHR was welcomed by the Senate to help the Senate ban us again.
I'm afraid I (outlandishly) suggested that groups that ban autistics--or, like ASC, confine autistics to a small, supervised hand-picked powerless ghetto--should no more be given a platform by the Senate than would groups that ban Jews or black people or people in wheelchairs (or confine these groups to a small, supervised hand-picked powerless ghetto) while claiming to represent them, but of course this was rejected before I was even done saying it. Banning autistics is fine with this Senate Committee. They did it themselves.
As happened in the previous set of hearings, I was not permitted to testify under my affiliation, and was required to appear as an individual. That is, the Senate refused to recognize that an autistic is a research associate affiliated with a research group, even though all correspondence was signed with my affiliation, and I requested to appear under my affiliation (and was also recommended as a witness by the research group I'm affiliated with). Since all the non-autistics who testified were permitted to use their affiliations (even when identifying themselves as parents or family members), I have to conclude that the persistent refusal of the Senators to recognized my affiliation is related to my diagnosis, and to the prejudices these Senators are promoting in their "thematic study on autism", including that autistics should not in any way be considered as equals, and that we have nothing to contribute to autism research.
In future, we hope to have the opportunity to undertake a thematic study on autism. Meanwhile, we advocate a fuller debate among all stakeholders. In particular, the Committee believes that persons living with autism must be recognized as full and equal partners in the discussion.
That "thematic study on autism" has now taken place in a series of hearings, with a report due in May, 2007. I tried to ask for two things in these hearings, and indeed, some themes emerged.
Previous hearings were used by autism advocates as a platform from which to denigrate and dehumanize autistics (see this and this). I asked the Senators to apply at least minimal standards to their autism hearings, so that autistics would not again be dehumanized and therefore harmed.
This was totally rejected. I was told that all views of autistic people were welcome, no matter how dehumanizing. There was no indication that this Committee saw dehumanization as being harmful to autistics. Perhaps they had already decided that if autistics are dehumanized, this is because we are in fact less than human. In any case, even a superficial glance through the transcripts in the Senate autism hearings shows that living, healthy, present autistics have been described, without protest, as bleeding to death, kidnapped, and dead. Autistics have been repeatedly portrayed as just naturally being violent because we're autistic, as appalling burdens, etc.
Unsurprisingly, in the final hearing on December 8 (a hearing supposedly dedicated to autism research), one Senator asked a non-autistic witness about the problem (which made this Senator "sadder than I already have been") that autistics ("those who suffer from this disability") don't feel anything. We don't experience happiness or pain. This was a Senator asking a non-autistic about an assumption the Senator had made--that autistics aren't sentient, or human.
The second thing I asked was for the Senators to live up to what they wrote in 2005, and to include autistics in these hearings as "full and equal partners". Instead, the Senators banned autistics from the most important hearing of the series, the big round table meeting about autism research.
I spent some time trying to persuade the Senators that they should reconsider. This also was totally rejected.
Their decision to ban autistics from discussions and decisions about autism research, like their decision that the dehumanization of autistics is welcome, is a major consequence of these hearings. Autistics have been banned before. Efforts were made to change this. Now the Senate has weighed in and showed all Canadians that autistics really should be banned. And if we're dehumanized too, that's also just fine. That's how autistics should be treated in Canada.
Canada's Senators have told autistics to stay away from autism research, to forget about even considering that we have anything to say about our future (a future which is overwhelmingly determined by autism research), and to leave the major decisions about us in the hands of non-autistics. They've told autistics we should never, ever question this.
And the Senators refuse to explain why autistics were banned. Senator Art Eggleton's office promised to send a letter with an explanation. This promise was no less empty than the Senators' promise to recognize autistics as "full and equal partners".
According to Senator Eggleton, speaking at the autistic-free round table about autism research, the Senators asked Rémi Quirion from the Canadian Institutes of Health Research to decide who should attend this meeting. The CIHR, and Dr Quirion himself, have previously united with Autism Society Canada, Autism Speaks (NAAR, at the time), the Canadian Autism Intervention Research Network and others, to ban autistics from all discussions and decisions about autism research in Canada.
Dr Quirion and the CIHR, and ASC, Autism Speaks and CAIRN, have never apologized for this, or indicated that they may have made an error, or explained why they decided to ban autistics. Instead, they continue to maintain that while autistics deserve to be banned, we don't deserve an explanation. Canada's Senators have just repeated the same process and made the same decisions, with all their considerable authority: autistics should be banned, and we aren't worth the bother of an explanation.
Meanwhile, non-autistic parents are as always invited, always considered expert, always welcome, and always taken very seriously. It would be unthinkable to ban non-autistic parents. This would make headlines. There would be demonstrations. There would be outraged editorials. Same thing if non-autistic parents were dehumanized, or portrayed as just naturally being violent, as autistics have been in these hearings. Heads would roll. You would never hear the end of it. Etc.
At the December 8 meeting, Senator Eggleton, the Committee Chairperson, indicated sternly that the Senators had invited quite enough autistics already. Clearly, having us at the round table with the 16 invited non-autistics (parents, parent-run organizations, family members, and researchers) would have been downright excessive, and surely outlandish, by the standards of our Senators.
Of the 48 witnesses who appeared in the Senate autism hearings, 5 were autistics (most hand-picked by organizations overwhelmingly run by and for non-autistics), and 43 were non-autistics.
Of the 12 sessions, non-autistics appeared in 10, and autistics appeared in 2. Non-autistic parents and/or parent-run groups (16 witnesses) appeared in 7 sessions. None of the many groups which appeared had any meaningful participation by autistics, and most had none at all. Groups that actively ban autistics, including by denying that autistics who communicate are autistic, were welcomed with open arms (e.g., Autism Speaks, the CIHR, CAIRN, FEAT), as was ASC, which has recently banned autistics, and having been required to appear to include autistics, has built a supervised autistic ghetto.
Of the 48 witnesses, ASC had at least 8 witnesses, CAIRN had at least 6 witnesses, FEAT had at least 4, and Autism Speaks had at least 2. The CIHR appreared, as did the Office for Disability Issues and Health Canada--all government organizations that have banned autistics, and of course, the CIHR was welcomed by the Senate to help the Senate ban us again.
I'm afraid I (outlandishly) suggested that groups that ban autistics--or, like ASC, confine autistics to a small, supervised hand-picked powerless ghetto--should no more be given a platform by the Senate than would groups that ban Jews or black people or people in wheelchairs (or confine these groups to a small, supervised hand-picked powerless ghetto) while claiming to represent them, but of course this was rejected before I was even done saying it. Banning autistics is fine with this Senate Committee. They did it themselves.
As happened in the previous set of hearings, I was not permitted to testify under my affiliation, and was required to appear as an individual. That is, the Senate refused to recognize that an autistic is a research associate affiliated with a research group, even though all correspondence was signed with my affiliation, and I requested to appear under my affiliation (and was also recommended as a witness by the research group I'm affiliated with). Since all the non-autistics who testified were permitted to use their affiliations (even when identifying themselves as parents or family members), I have to conclude that the persistent refusal of the Senators to recognized my affiliation is related to my diagnosis, and to the prejudices these Senators are promoting in their "thematic study on autism", including that autistics should not in any way be considered as equals, and that we have nothing to contribute to autism research.
Tuesday, December 12, 2006
Talking to the Senate
A while back, Autism Diva wrote about some testimony I gave as a witness in Canada's Senate. This was for the Standing Committee on Social Affairs, Science and Technology hearings about autism treatment funding (and about a national autism strategy).
The official transcript of the hearing where I spoke has now been posted. You can find it here.
I haven't looked through it carefully, but at least some of the errors in the first effort at transcribing have been corrected. I can spot one place where my correction wasn't accepted, and the "correction" is worse than the original. I was trying to say "Boyd and Corley", and now they are insisting that I said "Boyd and Connelly", which gives a fair indication of how poor my enunciation can be when I'm not reading word for word from a script. And when I'm stressed right out. I've just spotted another place where something that was correct first time around was changed so it is now incorrect, based no doubt on my lousy articulation. I'm definitely a stenographer's nightmare.
Last time I appeared before this Committee, I read my brief word for word. In this case, I had insufficient warning, and apart from the words I had from other people, who were generous in allowing me to present their writing, I was not prepared at all.
I remember vaguely that after I spoke and I was sitting there shaking, an enthusiastic person rushed up to me and said things and I had to ask, "Who are you?", and it turned out to be one of the Senators. That was right before I was whisked out of the room and backwards through security and out to a taxi stand because I was about to be late for my train (the last one to leave town).
The official transcript of the hearing where I spoke has now been posted. You can find it here.
I haven't looked through it carefully, but at least some of the errors in the first effort at transcribing have been corrected. I can spot one place where my correction wasn't accepted, and the "correction" is worse than the original. I was trying to say "Boyd and Corley", and now they are insisting that I said "Boyd and Connelly", which gives a fair indication of how poor my enunciation can be when I'm not reading word for word from a script. And when I'm stressed right out. I've just spotted another place where something that was correct first time around was changed so it is now incorrect, based no doubt on my lousy articulation. I'm definitely a stenographer's nightmare.
Last time I appeared before this Committee, I read my brief word for word. In this case, I had insufficient warning, and apart from the words I had from other people, who were generous in allowing me to present their writing, I was not prepared at all.
I remember vaguely that after I spoke and I was sitting there shaking, an enthusiastic person rushed up to me and said things and I had to ask, "Who are you?", and it turned out to be one of the Senators. That was right before I was whisked out of the room and backwards through security and out to a taxi stand because I was about to be late for my train (the last one to leave town).
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