Also, there is no doubt that a lot of autistics are written off. But I disagree with Bill and with Mr Doherty that some autistics just naturally are write-offs.
The problem with Ms Dawson's cavalier comment is that it is not true. I have never used the expression write off to describe any autistic person and have not at any time advocated the view that ANY "autistics", or persons with autism, are write-offs, "just naturally" or otherwise.
My son, unlike Ms Dawson, was diagnosed with an Autism Disorder at age 2. His diagnosis is Autism Disorder with profound developmental delays. In 9 days Conor will turn 12 years of age. I have spent much of the past 10 years actively advocating, along with other parents, for autism specific pre-school intervention and school instruction, along with accommodation in their learning environments here in New Brunswick, Canada. I have also worked for improvements in residential care and treatment for autistic adults. My actions have been those of one who does NOT write autistic persons off. I do not write off my son who is much more severely autistic than Ms Dawson.
I am assuming that Ms Dawson did not intentionally misstate my views on autistic persons. I am assuming that her comments were simply a mistake, the result of hostility to those persons, like me, who fight for ABA help for autistic children in Canada and who do not accept her as an authority of any weight on autism or autism interventions.
Ms. Dawson's full "commentary" follows.
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In a well-designed multi-site RCT, Tryer et al. (2008) showed that placebos were dramatically effective in reducing "aggressive challenging behavior" in developmentally disabled adults. Some of the adults were autistic; there was no difference in the dramatic effectiveness of the placebo in autistics vs other developmentally disabled people.
The dramatic effect of the placebo was rapid and sustained for 6 months (the intended follow-up period).
This is why good experimental design exists, and the authors of Tryer et al. (2008) take the trouble to argue that developmentally disabled people deserve to benefit from and be protected by recognized standards of science.
This is one of the major things I go on about.
So that would be at least part of my response to Dr LaVigna (who is unsurprisingly enthusiastic about the services he provides).
Also, there is no doubt that a lot of autistics are written off. But I disagree with Bill and with Mr Doherty that some autistics just naturally are write-offs. More plausibly, autistics who are written off have very difficult outcomes, but this would be true of all human beings who are written off.
autism
Well I hope you all enjoy his last year before the terrible teens - save us from the hormones!
ReplyDeleteMany happy returns of the day to Connor [soon]
Best wishes
I have grave concerns that the writing of Michelle Dawson is inaccurate and misleading. My gravest concern is that the writing of Michelle Dawson has influenced others to have an unfair negative attitude about you and me and others who genuinely are concerned about the future of persons with autism. For example, before Michelle Dawson wrote her comment in the blog of Steve Dionne, Bill had written:
ReplyDelete"...But while I hope and pray that it wasn't true; Mr Doherty is probably right to say that there are autistic people who may be beyond our abilities to help."
And in the original blog entry itself, Steve Dionne wrote:
"But I do recognize that as a person grows and develops, more opportunities must be afforded that person to self-determine. The squelching of this basic human right is a travesty and occurs far too frequently amongst autistic people (particularly in institutional settings). There are those (again, like Harold Doherty) who believe that institutions are very appropriate for many people, for those who are simply 'beyond help'. I disagree, and therefore applaud Dr. LaVigna's focus on this issue."
Harold - do you wish to further clarify your position in light of these comments about you in the same blog?
Arthur Golden of Jerusalem Israel
Father of a 36 year-old son Ben, nonverbal with severe autism
Mr Golden
ReplyDeleteI have never said that any autistic person is a write off. Nor have I suggested that in other language. Ms Dawson was wrong to state that I do.
Some autistic persons require an institutional level of care. They need it for the security and the autism expertise that an institution level facility can provide. That is not at all the same thing as saying that an autistic person is a write off or beyond help.
It is saying that some autistic persons require that level of care because of their deficits and severity of their condition. This is not a subject of serious debate amongst real autism advocates, amongst whom I do not count Ms. Dawson.
Here in New Brunswick our community based group home system has failed to provide either the security or the trained personnel necessary to provide a decent life for our more severely autistic citizens. We have literally sent some of them to other jurisdictions, including the US, to receive that level of residential care.
We are not unique in NB. Bernard Rimland wrote in 1997 about the disastrous consequences of closing institutions, of the loss of security, the loss of expertise provided by institutional level facilities. The proper solution is to ensure that institutions are modern healthy living environments. Not to close them and throw those who need such environments to the care of untrained staff in group homes or even worse onto the streets.
My son does not understand automobile traffic and other dangers of daily life and must be attended to 24/7 for his own security. When I am too old and feeble to care for him, or when I am deceased, a group home will not provide the level of security or the trained personnel or expertise necessary to help him live a decent life. The Michelle Dawson's and Steve D's offer no serious solutions to these realities. They simply sit on the internet and snipe at people who do not subscribe to their rhetoric.
I find their mis-characterizations of my positions, and the opinions of other caring parents and advocates, offensive and I do not pretend to respect their rhetorical excesses.
Ms Dawson and Steve D wrongly claimed that I consider autistic persons write offs. It is they who should be clarifying and in this instance apologizing. But I won't be holding my breath.
Harold:
ReplyDeleteThank you for clarifying your position, which I believe shows your genuine desire, as you state on your home page, "to improve the lives of persons with Autism."
Then you state:
"Evidence based treatment, education and residential care by properly trained service providers are required to help the 1 in 150 persons who have an autism spectrum disorder."
I find it ironic that Michelle Dawson, just posted on her blog (with the statement on the homepage that "I believe that autistics deserve better") at:
http://autismcrisis.blogspot.com/2008/02/life-and-death-of-tiffany-pinckney.html
an entry about "The life and death of Tiffany Pinckney." Tiffany, a young woman with a diagnosis of autism, died while being criminally neglected "living" in the community, near Toronto, Canada - with no mention by Michelle, as you mention, of the need for Tiffany to have "residential care by properly trained service providers" instead, even if it was in a "dreaded" institution.
As a concerned outsider, I think your situation in all of Canada needs improvement, but it is critical that everyone who expresses concern for persons with autism in Canada should stop attacking each other and tries to work together.
Art
Mr Golden
ReplyDeleteMs Dawson is very good at drawing attention to herself and her personal opinions but I am not aware of any effort by Ms Dawson to actually help any children or adults with autism.
She has actively lobbied against the provision of ABA for autistic children even though there are five decades and hundreds of studies documenting its effectiveness in helping autistic children and even though serious responsible agencies have reviewed the available interventions many times and endorsed its effectiveness.
I am not aware of any effort by Michelle Dawson to actually help the most severely autistic persons and I am not even sure she admits their existence.
To Dinah
ReplyDeleteI rejected your comment. If you want to comment here on my opinions quote me, don't offer your interpretation, or someone else's interpretation of my opinions.
And don't make assumptions about what I know and don't know. I am well aware of Ms Dawson's work with high functioning autism expert Laurent Mottron and her efforts to prevent autisic children in Canada from receiving the benefits of ABA intervention.