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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Tuesday, July 14, 2009

Autism and ABA - A Realistic Picture (Video)

Across North America parents of autistic children continue to fight for ABA services for their autistic children whether it be American parents seeking to have private health insurers provide coverage of ABA treatment or parents in Ontario seeking to have ABA introduced in the school system or get their pre-school children off waiting lists for early ABA intervention. Yet the anti-ABA activists would have you believe that these parents are gullible, stupid people who have been misled by an evil ABA industry into believing that ABA will turn their autistic children into "normal" children.

Very few of the anti-ABA activists ever describe any personal experiences they have had with ABA. (There are exceptions, some determined anti-ABA activists are parents whose children apparently did not receive ABA from competent ABA therapists). Even Michelle Dawson, who intervened in the Supreme Court of Canada proceedings in Auton to offer an "autistic" perspective and to oppose government funding of ABA treatment for other people's autistic children, did not describe any personal experiences that she had with ABA. Nothing I have read in the writings of most anti-ABA activists refers to any personal ABA experiences on which they based their opinions. Nor do their descriptions of ABA reflect any real first hand knowledge of ABA.

The absurd rhetoric of the anti-ABA activists often paints a false picture of ABA as being abusive. Some resort to an old video clip of an aversive (hand slapping) being used in an ABA session to portray ABA as abusive. ( Such commentaries invariably ignore the once widespread use of a particular aversive "the strap" that was once used on ALL school children, including me in Grade 1, when I was strapped for kicking a soccer ball around the classroom during a brief absence by the teacher. I never did it again).

Parents really should ignore the ill informed, prejudiced, anti-ABA activists and check out for themselves how ABA is being provided today to autistic children in their area. I have said many times that my son enjoys receiving ABA. The following video from the NJ Star Ledge site presents a realistic picture of modern, non-aversive, ABA methods being used with an autistic child:












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Monday, July 13, 2009

Autism, ABA and Conor's Autism Medications (None)

The Internet criticism of ABA as an autism intervention comes largely from a rejection of evidence based medicine, ideological based rigidity and lack of any real experience with ABA. To the anti-behaviorists no ABA supportive studies are acceptable unless they are double blind controlled studies conducted over the life time of autistic persons. Obviously it would be unethical to provide a placebo intervention to an autistic child as an intervention over a lengthy period of time.

The various studies described by the American Academy of Pediatrics, the US Surgeon General, state agencies in New York, California and Maine, the Association for Science in Autism Treatment, the Center for Autism and Related Disorders, the May Institute and the thousands of health care and education professionals who actually work with and help autistic children will be ignored by the anti-ABA ideologues. There is no need to mention of course that the direct observations of autistic children by their own parents who live with their children, care for them, help them and observe them 24/7 are of no weight whatsoever to the ideologues for whom NO information supportive of ABA could ever be acceptable.

Some of the anti-ABA rhetoric originates with adult persons with various autism spectrum disorders who themselves have had no actual involvement with ABA. The further removed from the realities of ABA and the need for an effective intervention that helps autistic children the greater the chance that the irrational anti-ABA ideology will take root. The criticisms themselves are largely non-evidence based and ignore the many positive contributions that ABA has made to the lives of autistic children including my severely autistic son Conor.

Conor has learned various skills, reduced self injurious behavior, increased communication skills, attended a neighborhood school and functioned well. On the sidebar of this blog are pictures of Conor holding his perfect attendance certificate from grade 6 during which time he received ABA instruction at school. This year colds and a flu prevented him from perfect attendance but his desire to attend school did not diminish. He loves school ABA and all. Why would Conor jump up each day eager to attend school where he receives ABA intervention if it was so abusive?

I post many picture sets of Conor on this blog site over the past 3 years. These portray him as what he is -- a very happy, personable and lovable boy. ABA has not turned him "robotic" or robbed him of his personality. There is nothing at all abusive about ABA for autistic children, certainly not for Conor, despite the absurd rhetoric of the anti-behaviorists.

Conor is now 13 1/2 years old and stands 5' 11''. In the past year and a half he has undergone the adolescent "change of life" with rapid growth spurts and all the other changes that can be so disruptive of young personalities in the teen years. While there are some challenging behaviors at times there is nothing out of the ordinary. Despite his growing size, strength and disruptive adolescent changes he is still a very well behaved, gentle young man. We have not felt the need to provide Conor with ANY medications at any time to manage his behavior.

Although he used to bite himself with some frequency, and still does on occasion, such self harmful behavior is rare. He does not return home at the end of a day at school and engage in self injury as a way of coping psychologically as one prominent anti-ABA activist testified that she would do at the end of the work day. The ideologues can blame ABA intervention for Conor's near elimination of self injurious behavior or they can pretend that my direct observations about the impact of ABA in reducing such behavior are of no weight. No need to guess which way the anti-behaviorists would lean on that choice.

Conor has received NONE of the medications prescribed for many autistic children. The anti-ABA ideologues can also blame ABA for that result but they won't. They don't really want to look at the issue objectively. They do not want to look at the whole picture including the benefits ABA has brought to my son or other autistic children.

If you are the parent of a newly diagnosed autistic child consult your attending health care professionals about the best way to help your child. Make any treatment or intervention decisions with their input but do not be turned off of ABA as a possible intervention to help your child by the anti-ABA rhetoric that permeates some Internet autism hubs. Most of such rhetoric emanates from people with no direct involvement in helping autistic children. Most of such rhetoric emanates from people with no actual experience with ABA. Most of such rhetoric emanates from people, whether they fancy themselves researchers or not, who just don't know what they are talking about when they are talking about ABA. Do not be misled by the misbehavior of the anti-behaviorists.

In the meantime I am looking forward to another day with my wonderful son who has benefited greatly from his ABA intervention. Conor will probably also enjoy the day ... without the need to injure himself so that he can "cope psychologically" ... and without medication.

God damn that ABA!




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Sunday, July 12, 2009

Autism Speaks Calls Health Care Discrimination Unaccaptable But "Ed' Disagrees

In Canada parents fighting for evidence based effective health care for their autistic children, and in particular for ABA, have faced determined opposition from anti-ABA, anti-autism treatment activists Dr.Laurent Mottron, Michelle Dawson and their followers. This anti-autism treatment clique has not been successful in preventing provincial governments across Canada from providing ABA coverage to varying extents. They have provided convenient cover though for a Canadian federal government which refuses to provide funding for ABA treatment to ensure that autistic children, wherever they live in Canada, receive comparable access to effective autism treatment. (The same federal government has no problem investing in the recent study by Mottron, Dawson et al that shows that high functioning autistics are up to 40 percent faster at Raven's Standard Progressive Matrices (RSPM) problem-solving than non-autistics).

The irrational anti-treatment perspective also exists in the United States although it tends to be relegated to extremist Neurodiversity, Autism Hub, blogs like "The Standard Review" where the author, "Ed", says of the Autism Speaks video below:

"In the video here, Autism Speaks again promotes more misinformation using a misleading description of autism and how the goals and methods of inclusion are actually being approached.

Such claims that promote the need for normalizing behavior therapies continue to also support negative stereotypes, dangerous treatments, more abuse of autistic people, and ultimately the devastating view of autism that leads to all of this."

I don't know how "Ed" reaches the conclusions he does about the Autism Speaks video he is referencing and which is posted below. In all honesty his comments appear to me to be irrational and over the top. Ed may be one of the more extreme ND, Autism Hub, bloggers out there but I believe his views are for the most part consistent with those of the anti-autism treatment clique, including Michelle Dawson and Dr. Laurent Mottron, who dismiss the idea of curing autism as nonsense. But you can judge for yourself by playing the AS video.




I admire the work done by Autism Speaks generally although I do not agree with all of their decisions. (Autism Speaks contributed funding to the study done by the Mottron group mentioned above). Autism Speaks is right to fight against discrimination in provision of autism treatment coverage. Ideological opponents of autism treatment will never agree, or offer coherent criticism of attempts to obtain treatment for autistic children. Autism Speaks deserves full credit for standing up to these self appointed guardians of other people's autistic children.




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Friday, July 10, 2009

Autism and Wandering: Our Kids Disappear

"Our kids disappear. It's as simple as that".

The above remark is from Susan J. Loring, Director, Autism Resource Center of Central Massachusetts quoted in Safe, not sorry Locators help find autistic children on the Worcester Telegram & Gazette page NEWS telegram.com. The article reports the happy outcome of a missing autistic child in Worcester found safe after wandering away and getting lost and provides and also reports generally on the tendency of autistic children to wander away:

"In addition to experiencing seizures, social behavior issues and learning disabilities, autistic children wander.

Ninety-two percent of children with autism are prone to wandering, according to the National Autism Association. According to a report by the Journal of Autism and Developmental Disorders, elevated death rates among those with autism were in large part attributed to drownings, after they had wandered away."

People who believe that autism is a joy, that autism deficits are simply the product of social intolerance, will not want to acknowledge the real life dangers posed by the real life deficits that often accompany autism disorders. It is hard to promote autism as a life style or superior way of thinking when autistic children routinely wander away, in some cases to great harm.

As the father of a boy with Autistic Disorder and profound developmental delays, (he is severely autistic), I have lived through the experience of having Conor wander away while I was preoccupied with a business phone call. Despite crossing a busy city street adjacent to our home at the time everything turned out OK, thanks in large part to a Good Samaritan who stopped his vehicle, took him to the convenience store on the other side of the street and remained at the store with him. After calling 911 I went to retrieve Conor. The Good Samaritan waited only until I arrived then immediately turned and left before I could thank him or find out who he was.

I usually repeat this story on this site each time I read of an autistic child wandering away. I am not a generally fearful person. I am a fairly big man who grew up on army bases where you learned to fend for yourself. As a lawyer I am used to speaking up and asserting myself. But the fear ... and the guilt ... that I felt while Conor was missing, and before I knew he was safe, were both extremely intense. After living through such an experience I have no time for the ideologies that deny the harsher realities of autism disorders.




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Thursday, July 09, 2009

Conor on the Swings

Conor spent lots of time on the swings today at Odell Park and loved every minute of it. Seeing Conor so happy made Dad feel pretty good too.














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Conor at Odell Park

The Grey Summer, unrelenting grey skies and rain, finally gave way to bright sunny skies and on the second day of sunshine Conor and Dad headed to Odell Park in Fredericton to enjoy the outdoors.













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Support Bill C-360

An Act to Amend the Canada Health Act (Autism Spectrum Disorders)