Showing posts with label autism policy. Show all posts
Showing posts with label autism policy. Show all posts

Wednesday, July 15, 2009

CNN, CBC and the Amanda Baggs Controversy Site

At least two major and very influential media institutions, CNN in the US, and CBC in Canada, have featured Amanda Baggs as a person with an autism spectrum disorder and presented her views on the nature of autism. Some of her views were also presented by Michelle Dawson, who stated that Ms Baggs was an "autistic", to a Canadian Senate committee that examined autism and autism service delivery in Canada. When media institutions, and advocates like Michelle Dawson, present the views of an individual, in this case Amanda Baggs, as representing an "autistic" perspective do they have a duty to confirm that the person does in fact have an autism spectrum disorder before they do so?

If information surfaces subsequent to their presentation that calls the diagnosis into question do these presenters have a duty to correct, confirm or qualify their presentation of the individual as being an "autistic"? If that individual's views on autism are likely to affect public perception of the nature of autism disorders and public policy on provision of autism services should there not be a follow up from those that have presented her views as representing an autistic perspective?

In the case of Amanda Baggs serious questions have been raised about whether she is autistic or not and about the veracity of information about her life that she has presented to the world. A detailed account of information contradicting Ms Baggs personal accounting of her life as an autistic person can now be found on line at a blog site called Amanda Baggs Controversy.

The author of the ABC blog is anonymous. The blog does provide links and references, including to on line discussion groups in which Ms Baggs has apparently participated over the years . If the entries were in fact made by her, they show that she has presented herself as suffering from many mental health disorders, other than autism spectrum disorders, over the course of her life. The disorders from which Ms Baggs has allegedly claimed to be suffering from over the years include Dissociative Identity Disorder (Multiple Personality Disorder), Schizophrenia, Schizoaffective Disorder, Bipolar Disorder, Post Traumatic Stress Disorder and Depression.

In her presentation to the Canadian Senate anti-ABA activist and autism researcher Michelle Dawson quoted Ms Baggs from one of the latter's videos:

"I am a non-speaking autistic woman. While I do not agree with functioning labels, I have been labelled low-functioning"

The Amanda Baggs Controversy site references a number of personal testimonials purporting to contradict those statements and indicate that Ms Baggs was in fact a very capable speaker. Internet writings purportedly authored by Ms Baggs are provided in which she talks about discussions she has had in the past, and an admission by her that it is her voice heard in one of the videos. There are several testimonials referring to earlier periods of her life and her very high functioning abilities demonstrated during those years.

Amanda Baggs, in her video productions posted to the Internet, on her blog site and in the quotes of her comments made by Michelle Dawson to the Canadian Senate committee, often uses the "Royal We" in describing autistics, purporting to speak about how "autistics" think, feel, exist in the world. I have been a long time critic of CNN and CBC for featuring her as representative of autistic persons who offers the insights of an autistic person. With the many people who suffer from Autisic Disorders in the world CNN felt it appropriate to present Ms Baggs and her views of autism on multiple occasions. Her rehearsed Internet videos do not resemble autistic behavior that I have seen as the father of a severely autistic 13 year old boy or as an autism advocate who has had interaction with a number of persons with Autism and Aspergers including some autistic persons living in institutional care but I acknowledge that I am not qualified to challenge her ASD diagnosis.

I do though think that it is incumbent upon organizations such as CNN and CBC, who have presented Ms Baggs as an autistic person whose views about the nature of the disorder should be considered by the public and by public policy makers, to follow up on their own journalistic representations given the existence of this public controversy. These organizations should interview her again, the persons who have provided information contradictory of her personal life claims and the professionals who have treated her over the years to confirm, refute or qualify what appear to be well documented claims such as those presented at the Amanda Baggs Controversy site.

CNN and CBC have told us that Amanda Baggs is autistic and we should listen to her views about autism, autism treatment and services and public understanding of autism. If their characterization of her as being a person with an autism disorder, or the facts of her personal narrative, are found to be incorrect ... or if they are confirmed ... those results should be presented to the public and public policy makers for consideration.




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Monday, January 26, 2009

For Autism President Obama Is The Leader Canada Needs

Canadians generally prefer US President Barack Obama over Canadian Prime Minister Stephen Harper as shown in a poll reported on Seattle PI:

A new national Ekos Poll gives U.S. President Barack Obama an 81 percent approval rating among Canadians, more than twice the favorable rating of Canada's Prime Minister Stephen Harper.

The poll of 1,000 Canadians, conducted Jan. 15-17, found that only 35 percent of those surveyed approve Harper's performance in office, compared to 55 percent who disapprove.

There are too many striking differences between the charismatic, high minded, non-partisan President Obama and the narrow minded, partisan Prime Minister Harper to begin to list them all in a simple blog commentary. This blog though is about autism and the differences are shown clearly in the two leaders aproaches to dealing with the autism crisis confronting our countries.

President Obama sought input from all sources on autism using modern internet communications technologies and he has committed to helping Americans with autism. Prime Minister Harper held a closed door "symposium" which intentionally excluded advocates for evidence based autism treatment for all Canadians. Unlike Mr. Obama, Mr. Harper refuses to commit to helping Canadians with autism preferring to hide behind irrelevant Constitutional jurisdiction arguments. (The Canada Health Act exists despite such arguments).

President Obama's autism commitments as set out on the official White House site:

Autism

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:

  • First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
  • Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
  • Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
  • Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.
I don't suppose our American friends would consider trading leaders?




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Sunday, October 28, 2007

Autistic Children Lost On Waiting Lists In Canada's Autism Wasteland

In Waiting list for help is long the Leader-Post this weekend reports on the autistic children getting lost on the waiting lists in Saskatchewan, Canada's Autism Wasteland. The Leader-Post reports that Saskatchewan is the only province in Canada without a comprehensive treatment program for autistic children. At the Autism Resource Centre in Regina one child has been on a waiting list for services for 2 1/2 years and is still number 66 from the top. Once at the top of the list, a child will receive a program plan and some support services but no treatment program. The extremely valuable early years development time is being lost due to government indifference.

The school years are no different in Canada's Autism Wasteland where the Saskatchewan government nonchalantly relies on the approach that schools are expected to provide all students' needs from special education funding - without the funding and trained personnel to provide autism specific educational assistance to autistic children. The result - autistic students - even non verbal autistic students - are dumped in the mainstream classrooms without proper help.

What is it in the air or the water in Saskatchewan that has caused its political and civil service leadership to be so indifferent to the needs of autistic children? How can they just ignore the needs of vulnerable children?

It is not simply a money issue. New Brunswick is on a similar economic and population footing as Saskatchewan but much more has been done here for our autistic children and much more continues to be done.

It is not like the Saskatchewan leadership can rely on ignorance as an excuse. With internet communications today it is impossible for any conscious, and conscientious, leader to pretend that they do not know that 1 in 150 children in their jurisdiction will be diagnosed with this neurological disorder.

It appears that, apart from calloused indifference, the explanation for Saskatchewan's inaction may lie in proximity to Canada's wealthiest province - Alberta. The much healthier funding for autism services in Alberta has resulted in some Saskatchewan families moving next door to obtain treatment for their autistic children.

Why is Saskatchewan Canada's Autism Wasteland? Is it possible that the Saskatchewan leadership is simply leaving it to their Alberta neighbors to deal with? It certainly looks that way.