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.
▼
what I do (pages)
▼
Sunday, December 24, 2006
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.
------------------------------------------------------------------------------------
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.
-------------------------------------------------------------------------------------
------------------------------------------------------------------------------------
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.
-------------------------------------------------------------------------------------
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).
Thursday, December 07, 2006
Verbatim: A fixed glassy-eyed look
This Verbatim is in two parts, from the same paper (Koegel et al., 1974).
Here is the first part, which is Table 1 from this paper. "Subject 1" is an 8-year-old autistic boy. "Subject 2" is a 6-year-old autistic girl. Table 1 lists the behaviours the experimenters identified as self-stimulatory and requiring suppression for each child.
Here is the second part, which is from the text of this paper, and describes what the experimenters did about the behaviours listed in Table 1:
In baseline sessions, the child was allowed to engage in self-stimulation; in the suppression sessions, self-stimulatory responses were punished by one or both of the experimenters sharply saying "No!" and briskly slapping or briefly holding (immobilizing) the part of the child's body with which the response was being performed. To ensure that all self-stimulatory responses were punished on a continuous schedule, one experimenter suppressed self-stimulation from the waist up and the other from the waist down.
Reference:
Koegel, R.L., Firestone, P.B., Kramme, K.W., & Dunlap, G. (1974). Increasing spontaneous play by suppressing self-stimulation in autistic children. Journal of Applied Behavior Analysis, 7, 521-28.
Here is the first part, which is Table 1 from this paper. "Subject 1" is an 8-year-old autistic boy. "Subject 2" is a 6-year-old autistic girl. Table 1 lists the behaviours the experimenters identified as self-stimulatory and requiring suppression for each child.
Table 1
Complete list of self-stimulatory responses for Subject
1 and Subject 2.
Subject 1
1. eye crossing
2. finger manipulations (moving the hands with continuous flexion and extension)
3. repetitive vocalizations (excluding recognizable words)
4. feet contortions (tight sustained flexions)
5. leg contortions (tight sustained flexions)
6. rhythmic manipulation of objects (repeatedly rubbing, rotating, or tapping objects with fingers)
7. grimacing (corners of mouth drawn out and down, revealing the upper set of teeth)
8. staring or gazing (a fixed glassy-eyed look lasting more than 3 sec)
9. hands repetitively rubbing mouth
10. hands repetitively rubbing face
11. mouthing of objects (holding nonedible objects in contact with the mouth)
12. locking hands behind head
13. hands pressing on or twisting ears
Subject 2
1. staring or gazing (a fixed glassy-eyed look lasting more than 3 sec)
2. grimacing (corners of mouth drawn out and down, revealing the upper set of teeth)
3. hand waving vertically or horizontally with fingers outstretched in front of eyes
4. hands vigorously and repetitively rubbing eyes
5. hands vigorously and repetitively rubbing nose
6. hands vigorously and repetitively rubbing mouth
7. hands vigorously and repetitively rubbing ears
8. hands vigorously and repetitively rubbing hair
9. hands vigorously and repetitively rubbing clothes
10. hands vigorously and repetitively rubbing objects
11. hand flapping in air
12. hand wringing (hands alternately rubbing and clutching each other)
13. finger contortions (tight sustained flexions)
14. tapping fingers against part of body or an object
15. tapping whole hand against part of body or object
16. mouthing of objects (holding nonedible objects in contact with the mouth)
17. rocking (moving the trunk at the hips rhythmically back and forth or from side to side)
18. head weaving (moving head from side to side in a figure-eight pattern)
19. body contortions (sustained flexions or extensions of the torso)
20. repetitive vocalizations (excluding recognizable words)
21. teeth clicking (audibly and rapidly closing teeth together)
22. tongue rolling and clicking
23. audible saliva swishing in mouth
24. repetitive tapping feet on floor
25. repetitive tapping toes inside shoes (visible through canvas tennis shoes)
26. leg contortions (tight sustained flexions)
27. repetitive knocking knees against each other
28. repetitive knocking ankles against each other
29. tensing legs and suspending feet off the ground
30. head shaking (rapid small movements from side to side)
31. tensing whole body and shaking
Here is the second part, which is from the text of this paper, and describes what the experimenters did about the behaviours listed in Table 1:
In baseline sessions, the child was allowed to engage in self-stimulation; in the suppression sessions, self-stimulatory responses were punished by one or both of the experimenters sharply saying "No!" and briskly slapping or briefly holding (immobilizing) the part of the child's body with which the response was being performed. To ensure that all self-stimulatory responses were punished on a continuous schedule, one experimenter suppressed self-stimulation from the waist up and the other from the waist down.
Reference:
Koegel, R.L., Firestone, P.B., Kramme, K.W., & Dunlap, G. (1974). Increasing spontaneous play by suppressing self-stimulation in autistic children. Journal of Applied Behavior Analysis, 7, 521-28.
Tuesday, December 05, 2006
A motion against autism
Liberal MP Andy Scott's motion to create a national autism strategy was passed in the House of Commons today. All national political parties supported this motion, a reflection of their explicitly stated shared goal and ideal of a Canada free of autistic people.
Mr Scott's motion, drafted in consultation with Canada's important autism advocates, can be found in his press release announcing the passing of this motion
This is what I wrote about the consequences of Mr Scott's motion on the TMoB board, many hours before it passed:
[A]utistics in Canada will be more and more seen and treated as though we are sick, defective, diseased and unwanted burdens who have nothing to contribute to Canada except the possibility that we may one day (after undergoing unlimited medical and other interventions) imitate the people who say we have so little worth that we shouldn't even exist.
Starting tomorrow, we'll be more and more likely to be required to undergo unlimited treatment to get rid of our essential traits and abilities. We'll be less and less likely to receive assistance and accommodation to allow these traits and abilities to flourish. We'll be less and less likely to have basic human rights to protect our essential differences.
Interestingly, both the autism advocate Harold Doherty and Liberal MP and autism advocate Shawn Murphy consider that this motion is about autistic children only, though the exclusiveness of the motion to children who Mr Murphy considers to be "suffering from Autism Spectrum Disorder" is not specified in the motion itself. The debates in the House of Commons prior to the passing of Mr Scott's motion also revealed that our political leaders see all autistic people who now exist in Canada as being children. In fact, Peter Stoffer, the NDP MP who seconded Mr Scott's motion, invariably describes autistics as children, which is like referring to all aboriginal people in Canada as children.
However, Mr Scott's motion does not go nearly as far as autism advocates wish, or as far as Mr Scott (who sees all autistics as sick and requiring medical treatment) wishes. Also, this is merely a motion against autism, and our autism advocates demand a law against autism. This time, Mr Murphy is leading the charge, to pathologize all autistic traits and abilities under the law, and to have one approach to autism--that would be ABA/IBI--legislated as "medically necessary" treatment for all autistic people in Canada (keeping in mind that Mr Murphy seems to consider all autistic people to be children).
Mr Murphy wrote in his recent press release:
Research shows that children with Autism Spectrum Disorder, which affects two in every thousand Canadian children, can grow up to function independently in society when they receive Applied Behavioural Analysis (ABA) and Intensive Behavioral Intervention (IBI) from an early age through to adulthood.
In fact, research shows that Mr Murphy's epidemiology is out to lunch, and therefore consistent with the standards of all our famous autism advocates.
But I want to see the peer-reviewed research Mr Murphy refers to, which apparently gives data from a controlled trial about the adult outcomes of children who underwent early ABA/IBI, and shows that these adults "function independently" (whatever that means; independently of what?). In fact, Mr Murphy is reporting research on autistics who start ABA/IBI at the age of early diagnosis and stay in it "through to adulthood", and "function independently" (starting at what age?). I'd like to see those controlled trials as reported in peer-reviewed papers.
I'd write to him and ask for the references, but he hasn't answered even one of a handful of much easier questions I sent him a long time ago. Questions like whether his proposed law would make ABA/IBI "medically necessary" for Rett's individuals, or who should be involved in making decisions about autistic people, or which kind(s) of ABA/IBI he wants the law to make "medically necessary", or whether ABA-based interventions would only be considered medical treatment when applied to autistics but not to those with other neurodevelopmental disabilities, or whether behaviour analysts would now be considered medical professionals, etc. I was told by his staff that these questions were too difficult.
They shouldn't be, not for an expert like Mr Murphy, who took one look at a photo of an autistic person and declared that this person, Alex Bain, looked "normal" (Mr Murphy's instant diagnosis). This made Mr Murphy decide that this autistic's mother--janet norman-bain--was ignorant of autism. In true autism advocate style, Mr Murphy thought it necessary to repeatedly inform Ms norman-bain that autism is a spectrum, something he assumed she was not aware of. At least we now know that Mr Murphy is an expert in condescension. He could give lessons.
In any case, I'd sure like to see all that research showing that ABA-based autism interventions are medical in nature and therefore constitute medical treatment. Where is this research, Mr Murphy and Mr Scott? All I see everywhere in peer-reviewed behaviour analytic journals is ABA-based interventions being described as education, as a learning approach, as instruction, as training. And I don't see ABA-based intervention studies being published in medical journals, with medical journal standards (e.g., disclosing conflicts of interest). I also see famous behaviour analysts denying that medical approaches to autism are valid, and emphasizing the effectiveness--by their standards--of non-medical approaches (Lovaas, 1979; Lovaas and Smith, 1988, 1989; Lovaas, 1993; Lovaas, 2002; etc.).
But anyone who's familiar with autism advocacy knows that autism advocates believe that autistics don't deserve even the most basic standards of science, ethics, and advocacy, much less the high standards that benefit and protect themselves. After all, their ideal Canada is not one in which autistics participate as equals, but one in which autism is prevented and therefore autistics do not exist at all. In the meantime, we have a motion against autism, and a law can't be far behind.
References:
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.
Mr Scott's motion, drafted in consultation with Canada's important autism advocates, can be found in his press release announcing the passing of this motion
This is what I wrote about the consequences of Mr Scott's motion on the TMoB board, many hours before it passed:
[A]utistics in Canada will be more and more seen and treated as though we are sick, defective, diseased and unwanted burdens who have nothing to contribute to Canada except the possibility that we may one day (after undergoing unlimited medical and other interventions) imitate the people who say we have so little worth that we shouldn't even exist.
Starting tomorrow, we'll be more and more likely to be required to undergo unlimited treatment to get rid of our essential traits and abilities. We'll be less and less likely to receive assistance and accommodation to allow these traits and abilities to flourish. We'll be less and less likely to have basic human rights to protect our essential differences.
Interestingly, both the autism advocate Harold Doherty and Liberal MP and autism advocate Shawn Murphy consider that this motion is about autistic children only, though the exclusiveness of the motion to children who Mr Murphy considers to be "suffering from Autism Spectrum Disorder" is not specified in the motion itself. The debates in the House of Commons prior to the passing of Mr Scott's motion also revealed that our political leaders see all autistic people who now exist in Canada as being children. In fact, Peter Stoffer, the NDP MP who seconded Mr Scott's motion, invariably describes autistics as children, which is like referring to all aboriginal people in Canada as children.
However, Mr Scott's motion does not go nearly as far as autism advocates wish, or as far as Mr Scott (who sees all autistics as sick and requiring medical treatment) wishes. Also, this is merely a motion against autism, and our autism advocates demand a law against autism. This time, Mr Murphy is leading the charge, to pathologize all autistic traits and abilities under the law, and to have one approach to autism--that would be ABA/IBI--legislated as "medically necessary" treatment for all autistic people in Canada (keeping in mind that Mr Murphy seems to consider all autistic people to be children).
Mr Murphy wrote in his recent press release:
Research shows that children with Autism Spectrum Disorder, which affects two in every thousand Canadian children, can grow up to function independently in society when they receive Applied Behavioural Analysis (ABA) and Intensive Behavioral Intervention (IBI) from an early age through to adulthood.
In fact, research shows that Mr Murphy's epidemiology is out to lunch, and therefore consistent with the standards of all our famous autism advocates.
But I want to see the peer-reviewed research Mr Murphy refers to, which apparently gives data from a controlled trial about the adult outcomes of children who underwent early ABA/IBI, and shows that these adults "function independently" (whatever that means; independently of what?). In fact, Mr Murphy is reporting research on autistics who start ABA/IBI at the age of early diagnosis and stay in it "through to adulthood", and "function independently" (starting at what age?). I'd like to see those controlled trials as reported in peer-reviewed papers.
I'd write to him and ask for the references, but he hasn't answered even one of a handful of much easier questions I sent him a long time ago. Questions like whether his proposed law would make ABA/IBI "medically necessary" for Rett's individuals, or who should be involved in making decisions about autistic people, or which kind(s) of ABA/IBI he wants the law to make "medically necessary", or whether ABA-based interventions would only be considered medical treatment when applied to autistics but not to those with other neurodevelopmental disabilities, or whether behaviour analysts would now be considered medical professionals, etc. I was told by his staff that these questions were too difficult.
They shouldn't be, not for an expert like Mr Murphy, who took one look at a photo of an autistic person and declared that this person, Alex Bain, looked "normal" (Mr Murphy's instant diagnosis). This made Mr Murphy decide that this autistic's mother--janet norman-bain--was ignorant of autism. In true autism advocate style, Mr Murphy thought it necessary to repeatedly inform Ms norman-bain that autism is a spectrum, something he assumed she was not aware of. At least we now know that Mr Murphy is an expert in condescension. He could give lessons.
In any case, I'd sure like to see all that research showing that ABA-based autism interventions are medical in nature and therefore constitute medical treatment. Where is this research, Mr Murphy and Mr Scott? All I see everywhere in peer-reviewed behaviour analytic journals is ABA-based interventions being described as education, as a learning approach, as instruction, as training. And I don't see ABA-based intervention studies being published in medical journals, with medical journal standards (e.g., disclosing conflicts of interest). I also see famous behaviour analysts denying that medical approaches to autism are valid, and emphasizing the effectiveness--by their standards--of non-medical approaches (Lovaas, 1979; Lovaas and Smith, 1988, 1989; Lovaas, 1993; Lovaas, 2002; etc.).
But anyone who's familiar with autism advocacy knows that autism advocates believe that autistics don't deserve even the most basic standards of science, ethics, and advocacy, much less the high standards that benefit and protect themselves. After all, their ideal Canada is not one in which autistics participate as equals, but one in which autism is prevented and therefore autistics do not exist at all. In the meantime, we have a motion against autism, and a law can't be far behind.
References:
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.
Sunday, December 03, 2006
Notes on self-injury
Below are a few pieces (not very organized) of my informal and personal writing about autism and self-injury. I wrote these pieces for various reasons and various people, and they go back a ways. The last piece, which I wrote a long time ago on the TMoB board, was also included as part of my Statement of Particulars in my Canadian Human Rights Tribunal case.
The science in this area is extremely poor (as was testified at the Tribunal). When I wrote the below, Keen (2005) and Keen et al. (2005) had not yet been published. Both these papers support my informal observations in the area of autistic communication, as does the success of interventions designed to train parents to respond to their autistic children's communication (e.g., Aldred et al., 2004). Gernsbacher (2006) is an excellent review of this area. I also strongly recommend this, re the origins of so-called "challenging" behaviours from an autistic viewpoint.
-------------------------------------------------------------------------------------
Self-injury doesn't happen out of the blue, though it's often reported this way, and doesn't result from "autism". I've written a bit about self-injury (my self-injury has been an issue in many legal cases). It might help to remember that privacy is an issue (meaning, it bugs me to write about self-injury, even though it's probably important that autistics write about this), and also that a lot of autistics don't have or can't reliably achieve privacy, and this has consequences. Two things essential to a lot of autistics: privacy (being able to hide) and freedom(being able to leave), and we're extremely likely to be deprived of both.
-------------------------------------------------------------------------------------
I disagree strongly with the kinds of functional analyses of behaviour I see all the time in ABA programs, where the behaviour analyst makes all kinds of assumptions about the autistic, based on their ignorance of how autistics perceive the world and learn from it, and their total dismissal of our communication. This results in "last straw" behaviours. Your child communicates accurately to you a basic need, over and over, maybe ten or twelve (almost always this number) times. This is ignored, both because his kind of communication is considered "wrong", and because what he needs, which is different from what you need, is also "wrong". Then, having been honest and conscientious in his communication, and having been crushed by repeated failure, the kid bangs his head or hits someone or breaks something.
This is then the ONE behaviour that is noticed and analyzed. Then the child is taught how to communicate (he communicated perfectly in the first place, so really he is taught his own communication is wrong), and what he is allowed to communicate--not his real need (and this is almost always "need to know something", "need this small piece of information", or "need many, many pieces of information" when it is not "I am in pain and must deal with this") but the need everyone else has decided he was expressing when his behaviour became unacceptable. This happens to autistics who can talk, and talk very well, and are even called articulate, so speech (and speech is different from language or communication) is not the issue.
One of the hardest things that happens to some autistics is that after a great struggle to produce speech, we find it doesn't work either, it just continues to be exhausting. This is because our needs are different from non-autistic needs and our needs are called "wrong". And I mean what we need in order to learn, to achieve, to interact, to develop--our needs in all these areas are different.
-----------------------------------------------------------------------------------
I was asked in a documentary why I hurt myself. This was some years ago; I was just at the point where I was starting to realize I was not totally appalling because I was autistic. I was in an "environment" where no other conclusion was available.
Anyway, what I said when I was asked was that it (hurting myself) was my vocabulary. I have to add at this point that the fact that I hurt myself is obvious, even though I hurt myself in private. I have scars.
Then I said that I'd worked hard all my life to learn language. This was very, very difficult and took pretty much all my resources. But I learned, and I learned two languages. Then I found out this language thing didn't work; I was not good enough at it; I somehow did it wrong. My very accurate words weren't heard. I was and am frequently told I've said things I've never said, and haven't said things I have.
I hurt myself to re-establish some form of accuracy. I establish something I've absolutely done. This is a way of regaining accuracy. So while it may seem that I'm frustrated, that isn't the case. Confusion, yes to some degree. But there is an essential need to re-establish, after repeated failed communication, the existence of accuracy, or at least the possibility of accuracy, in order to continue to function at all.
-------------------------------------------------------------------------------------
References:
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.
Gernsbacher, M.A. (2006). Towards a behavior of reciprocity. Journal of Developmental Processes, 1, 138-152.
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.
The science in this area is extremely poor (as was testified at the Tribunal). When I wrote the below, Keen (2005) and Keen et al. (2005) had not yet been published. Both these papers support my informal observations in the area of autistic communication, as does the success of interventions designed to train parents to respond to their autistic children's communication (e.g., Aldred et al., 2004). Gernsbacher (2006) is an excellent review of this area. I also strongly recommend this, re the origins of so-called "challenging" behaviours from an autistic viewpoint.
-------------------------------------------------------------------------------------
Self-injury doesn't happen out of the blue, though it's often reported this way, and doesn't result from "autism". I've written a bit about self-injury (my self-injury has been an issue in many legal cases). It might help to remember that privacy is an issue (meaning, it bugs me to write about self-injury, even though it's probably important that autistics write about this), and also that a lot of autistics don't have or can't reliably achieve privacy, and this has consequences. Two things essential to a lot of autistics: privacy (being able to hide) and freedom(being able to leave), and we're extremely likely to be deprived of both.
-------------------------------------------------------------------------------------
I disagree strongly with the kinds of functional analyses of behaviour I see all the time in ABA programs, where the behaviour analyst makes all kinds of assumptions about the autistic, based on their ignorance of how autistics perceive the world and learn from it, and their total dismissal of our communication. This results in "last straw" behaviours. Your child communicates accurately to you a basic need, over and over, maybe ten or twelve (almost always this number) times. This is ignored, both because his kind of communication is considered "wrong", and because what he needs, which is different from what you need, is also "wrong". Then, having been honest and conscientious in his communication, and having been crushed by repeated failure, the kid bangs his head or hits someone or breaks something.
This is then the ONE behaviour that is noticed and analyzed. Then the child is taught how to communicate (he communicated perfectly in the first place, so really he is taught his own communication is wrong), and what he is allowed to communicate--not his real need (and this is almost always "need to know something", "need this small piece of information", or "need many, many pieces of information" when it is not "I am in pain and must deal with this") but the need everyone else has decided he was expressing when his behaviour became unacceptable. This happens to autistics who can talk, and talk very well, and are even called articulate, so speech (and speech is different from language or communication) is not the issue.
One of the hardest things that happens to some autistics is that after a great struggle to produce speech, we find it doesn't work either, it just continues to be exhausting. This is because our needs are different from non-autistic needs and our needs are called "wrong". And I mean what we need in order to learn, to achieve, to interact, to develop--our needs in all these areas are different.
-----------------------------------------------------------------------------------
I was asked in a documentary why I hurt myself. This was some years ago; I was just at the point where I was starting to realize I was not totally appalling because I was autistic. I was in an "environment" where no other conclusion was available.
Anyway, what I said when I was asked was that it (hurting myself) was my vocabulary. I have to add at this point that the fact that I hurt myself is obvious, even though I hurt myself in private. I have scars.
Then I said that I'd worked hard all my life to learn language. This was very, very difficult and took pretty much all my resources. But I learned, and I learned two languages. Then I found out this language thing didn't work; I was not good enough at it; I somehow did it wrong. My very accurate words weren't heard. I was and am frequently told I've said things I've never said, and haven't said things I have.
I hurt myself to re-establish some form of accuracy. I establish something I've absolutely done. This is a way of regaining accuracy. So while it may seem that I'm frustrated, that isn't the case. Confusion, yes to some degree. But there is an essential need to re-establish, after repeated failed communication, the existence of accuracy, or at least the possibility of accuracy, in order to continue to function at all.
-------------------------------------------------------------------------------------
References:
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.
Gernsbacher, M.A. (2006). Towards a behavior of reciprocity. Journal of Developmental Processes, 1, 138-152.
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.