Facing Autism in New Brunswick

Autism and Abuse in a Georgia School - Parents and Media Can Make A Difference

2009-07-17T05:04:00.018-03:00

I am not always impressed with national and international media coverage of autism spectrum disorders.

I have often been critical of CNN and CBC for their dilettante coverage of autism disorders and their periodic rediscovery and presentation of the same tired Neurodiversity rhetoric that has argued against the UN declared rights of autistic children to treatment for their autism disorders. But the mainstream media does, occasionally, do an excellent job reporting autism as was the case with the Vancouver Sun series Faces of Autism which offered comprehensive coverage of the autism spectrum including the challenges facing low functioning autistic persons and their families. Another, more recent, exception can be found in Autism Story Changes Policy For All Georgia Students in which 11 Alive News of Atlanta, Georgia pats itself on the back, deservedly, for its media coverage of the school abuse of a non-verbal autistic boy. The coverage prompted action by the Georgia governor to put in place policies to protect autistic children, and other children with disabilities, in Georgia schools.

The article also describes the determined and courageous efforts of the boy's parents, Marcelo and Carolyn Ferrari, in obtaining proof that the abuse occurred at school and fighting off a bureaucracy that was more devoted to defending itself, and attacking the parents, then in bringing out the truth and protecting children at school. Autism Story Changes Policy For All Georgia Students confirms the important role that parents play in protecting our autistic children. It also confirms that the media, particularly local media, can play an important role when it is prepared to get involved and practice real journalism.

Some things will never change. In another year, and the year after that, and so on, some one sitting in a plush, comfortable chair at the CBC's National offices will, probably "discover", once again, that Michelle Dawson, Ari Ne'eman, Alex Plank and Amanda Baggs do not want to be cured of their autism and Aspergers Disorders. Hopefully though real journalists will continue to role up their sleeves and provide relevant and important coverage of autism realities like that provided in Faces of Autism and Autism Story Changes Policy For All Georgia Students.

Parents, and real journalism, can make a difference, a positive difference, in the lives of persons with autism disorders.

autism

Autism Cure Research Underway? Or Have We Given Up?

2009-07-16T11:55:00.017-03:00

Parents of autistic children have searched for effective treatment, and preferably a cure, for their autistic children for many years. To date only Applied Behavior Analysis, ABA, enjoys strong evidential support as an intervention that can help autistic children learn skills, improve their ability to communicate and reduce problem behaviors. But, as a strong supporter of ABA intervention for autistic children I do not suggest that it is a cure.

Possible cures and treatments, such as HBOT, stem cell and chelation do not enjoy any substantial evidential support as treatments for autism disorders and can involve risk to the autistic person undergoing treatment. But what studies, if any, are currently underway exploring possible treatments or cures for autism? A planned chelation study was abandoned on the basis of risk to child participants in the study.

Do we really need to spend charitable and tax dollars to finance the latest Mottron-Dawson group study promoting the ability of a small group of High Functioning Autistic persons to out perform a small group of non-autistic persons on one specific test? As a parent I am constantly amazed at some of the things my autistic son can learn and do on his own but his overall understanding of language and the world and his ability to function in it are limited. Do we really need to fund studies to tell us that parents of autistic children suffer additional stress levels from the extra child raising challenges presented by raising autistic children? Do we need yet another genetic study to tell us that there is a strong genetic basis to autism while ignoring possible environmental factors?

As the parent of a 13 year old boy with Autistic Disorder, assessed with profound developmental delays, a boy who stims but does not produce choreographed Internet videos about stimming and "autistic" language, I would like to see research done that might have some actual value to my son. It would be nice to see research that actually helps the intellectual functioning, the understanding of the world, ability to function in the world, of those autistic persons who do not appear before the Supreme Court of Canada, the Canadian Senate or CBC and CNN cameras.

It is long past time that research money was spent on ways to help autistic persons overcome their deficits. If we study genetics we will find genetic bases for autism. If we study problem solving abilities of High Functioning Autistic persons we will learn more about the the abilities of HFA persons.

If we fail to study causes of, and look for cures for, autism then no cure will be found. And those who claim that "the notion of curing autism is nonsensical" will win by default and our autistic children will lose.

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CNN, CBC and the Amanda Baggs Controversy Site

2009-07-15T05:04:00.018-03:00

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.

autism

Autism and ABA - A Realistic Picture (Video)

2009-07-14T06:12:00.012-03:00

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:

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

2009-07-13T04:14:00.014-03:00

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!

autism

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

2009-07-12T09:32:00.009-03:00

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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Autism and Wandering: Our Kids Disappear

2009-07-10T08:12:00.009-03:00

"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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Conor on the Swings

2009-07-09T16:41:00.014-03:00

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.

autism

Conor at Odell Park

2009-07-09T16:00:00.013-03:00

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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Autism Education: New Brunswick Educators Plan to Abandon Quality Autism Training for Aides Working with Autistic Students

2009-07-06T09:19:00.012-03:00

I have written often, and with great pride, about New Brunswick's Autism Service Delivery model for autistic students and pre-schoolers. NB's ASD model has been presented at a national and international conference. It has been subjected to external review by international autism expert Dr. Eric Larsson of the Lovaas Institute who stated:

"The current AITP is a remarkable and thorough program that has been developed to an exceptional level of quality in the context of limited resources. The province-wide model is one that many other provinces should adopt, as it carries with it many cost-effective features. The curriculum content requires little modification".

You would think that such success would be embraced by civil servants with portfolio responsibility for autistic students but sadly the opposite is true. At the school level the training of teacher assistants and resource teachers working with autistic children at UNB-CEL Autism Intervention Training has met with fierce resistance from the minute that the careerists in the Department of Education learned that the program was being implemented pursuant to discussions between the Autism Society of New Brunswick and the current government of the province.

Premier Shawn Graham and Education Minister Kelly Lamrock committed to funding training for 100 TA's and resource teachers a year for four years at the UNB-CEL AIT program. That commitment was resisted initially be "educators" who prepared 7 alternative proposal outlines with no meat to them in order to stall implementation of the UNB training commitment. When an alternative "plan" was fleshed out it included in house training which carried no assurances of quality or integrity. There were to be no entrance requirements. The course could be completed at the candidates leisure with no time line for completion and no graduation or exam requirements. The plan would be directed by a soon to be retiring Director of Student Services who was one of the most determined opponents of the UNB-CEL training commitment. Presumably he would have received a salary to administer the program in addition to his retirement pension.

As an indication of the ferocity of resistance to the UNB proposal the alternative plan was presented to ASNB at a meeting at which the Department indicated I could not attend or the meeting would not take place. A frivolous conflict of interest allegation was made against me on the grounds that I had a complaint against the Department relating to autism services before the NB Human Rights Commission. In that complaint I was not acting as a lawyer. I brought the complaint on behalf of my autistic son .... as his father. Rather than disrupt the meeting though I agreed not to attend and ASNB simply discussed the proposals afterward with everyone including me.

At a subsequent meeting of the Dialogue on Education Committee the agenda for the day made no mention of an autism training program to be discussed. I attended on behalf of the ASNB on short notice and had to leave at mid day. No mention was made to me before I left by the Department representative chairing the meeting, Brian Kelly, the current Director of Student Services, that the Department wished to again discuss autism intervention training. Despite not being on the agenda and despite not being mentioned while I was in attendance as the Autism Society representative or otherwise receiving any notice of intent to discuss it, an autism training proposal was discussed after I left.

Although the Department complains about expense it has sent teachers to receive autism training in North Texas even though a quality training program, as asserted by Dr. Larsson, is available right here in Fredericton. The union representing TA's has opposed the UNB-CEL training because of the entrance and completion requirements and the seniority claims of older Teacher Assistants. Some of their members are unable to enter or complete the program. The Department in a recent discussion with me acknowledged the Department's concern about TA's not being able to complete the UNB-CEL program.

Apparently Department educators share the CUPE union views that the seniority interests of Teacher Assistants are more important than ensuring that qualified, capable people work with autistic children in New Brunswick schools. CUPE officials have brought grievances on behalf of untrained Teacher Assistants seeking to work with autistic students ahead of UNB autism trained TA's. The Union has recently informed some UNB autism trained TA's that the Department of Education does not intend to continue the government commitment to training Teacher Assistants at UNB-CEL. In the view of the Department officials it is apparently OK for people who can not complete autism training at UNB to work with autistic children.

The other vested interest involved in undermining the NB commitment to a real education of autistic children is the AutismPro Internet autism program offered by Virtual Experts Inc. AutismPro has lobbied extensively and was included as part of the training proposal presented by Department Educators as an alternative to UNB-CEL training. It was marketed to some parents via the Department of Education which emailed them to tell them in very positive terms about the program availability. AutismPro is an interesting concept but there is little quality evidence that the program itself is an effective evidence based autism intervention let alone that it can assist in training of otherwise unqualified Teacher Assistants and Resource Teachers.

Fighting vested adult interests has always been a challenge for parents seeking effective, evidence based treatment and intervention for our autistic children here in New Brunswick.

Unfortunately it appears that our autistic students will once again be sacrificed to adult interests.

autism

The Grey Summer Gives Conor A Break

2009-07-05T14:32:00.014-03:00

It has been a grey summer with unrelenting cloud and rain.

Today started with more of the same and Conor relaxed with Dad's laptop and headphones. But the clouds let up a bit with the sun and blue sky breaking through at times. Conor was a bit reluctant to head out for a trail walk being out of the routine. With the steady bad weather there have been few good opportunities for outings. I was able to coax Conor back out on the trail though and he enjoyed the walk.

autism

Autism at School: Smaller Classrooms for Autistic Children

2009-07-04T07:59:00.007-03:00

Neuroscientists at a meeting of the International Multisensory Research Forum held held at The City College of New York (CCNY) have argued that children with autism require smaller class sizes because of sensory integration dysfunction. I agree with the learned neuroscientists although I would add that some autistic children also have Intellectual Disabilities and serious lack of understanding and communication skills. Some require ABA based instruction to learn. For all these reasons the larger mainstream classroom is not appropriate for some autistic children. I have stated that position many times on this blog site, in the Wayne MacKay review of inclusive education here in New Brunswick and in other public meetings with education officials.

My son, at our request, receives his academic instruction in a small room with a teacher assistant. He visits common areas of the school such as the gym, kitchen, library, pool etc where he is around other children. Several children say hi to Conor when they see him. One of these students who lives nearby even visits him at our home now and plays with water balloons on the step with Conor. Prior to being removed from the mainstream classroom Conor was coming home with bite marks on his hands the result of over stimulation in the classroom.

Science Daily quotes Dr. John J. Foxe, Professor of Neuroscience at CCNY :

“Sensory integration dysfunction has long been speculated to be a core component of autism spectrum disorder (ASD) but there has been precious little hard empirical evidence to support this notion. Viewing a speaker’s articulatory movements can greatly improve a listener’s ability to understand spoken words, and this is especially the case under noisy environmental conditions.”

“These results are the first of their kind to verify that children with autism have substantial difficulties in these situations, and this has major implications for how we go about teaching these children in the classroom,” he continued. “Children with autism may become distressed in large classroom settings simply because they are unable to understand basic speech if the environment is sufficiently noisy.

“We should start to pay attention to the need for smaller numbers in the classroom and we need to carefully control the levels of background noise that these kids are exposed to. Imagine how frustrating it must be to sit in a classroom without being able to properly understand what the teacher or your classmates are saying to you.

“Being able to detect speech in noise plays a vital role in how we communicate with each other because our listening environments are almost never quiet. Even the hum of air conditioners or fans that we can easily ignore may adversely impact these children’s ability to understand speech in the classroom.

“Our data show that the multisensory speech system develops relatively slowly across the childhood years and that considerable tuning of this system continues to occur even into early adolescence. Our data suggest that children with Autism lag almost 5 years behind typically developing children in this crucial multisensory ability.”

Actually this research simply confirms what many parents, including me, have observed directly for many years.

When your child comes home every day with bite marks on his hands it is evidence that can not be ignored by a parent.

When your child is moved to a quieter, less stressful environment and the biting ceases the conclusion to be drawn is obvious and all the feel good rhetoric of the mainstream classroom for all crowds such as we have here in New Brunswick will not cause you to change your mind.

autism

Autism and Vaccine Safety - Has the Scientific Method Been Abandoned?

2009-07-03T06:41:00.027-03:00

There is currently a persistent and strenuous effort being made to end discussion of possible vaccine connections to autism spectrum disorders. Led by vaccine patent holder Dr. Paul Offit the mainstream media and Internet based forums alike have been regurgitating ad nauseum Offit's position that the science is done, the evidence is in, that it has been proven conclusively, forever and ever and ever and ever, that vaccines and vaccine ingredients do not and can not ever cause autism disorders in children. But is that how science actually works? Does the scientific method actually involve arriving at an absolute truth not to be challenged forever? Or is such a position more properly characterized as idol worship?

Those who ask questions about the golden calf, about vaccine programs, are denounced as heretics, irresponsible and selfish types that refuse to protect the herd, and their own children, by having their children immunized for everything recommended, this month, or the next, by public health authorities. If someone, somewhere, dies from some disease whether it be measles or swine flu, there will be someone will blame the death on parents concerned about the safety of injecting chemical and biological materials directly into their child's bloodstream on a frequent basis. But is demonizing those concerned about vaccine safety part of the scientific method? Is rejecting forever challenges to the theory that vaccines do not cause autism in any children the way the scientific method is supposed to proceed?

TutorVista.com has an article on the Scientific Method simple enough for this lowly parent to follow. It lists a number of steps which it describes as constituting the scientific method. One of the points highlighted in the article is the provisional nature of a scientific theory or law :

Provisional essentially means temporary, conditional or transitional:

provisional adjective 1. temporary, interim, transitional, stopgap, pro tem <<> Collins Essential Thesaurus 2nd Edition 2006 © HarperCollins Publishers 2005, 2006 .

The scientific method recognizes that further evidence may refute a generally accepted theory. The scientific method encourages further evidence and challenge to accepted theories. Dr. Bernadine Healy, who has pointed out some of the limits of the existing epidemiological studies has also questioned the policy set out in the IOM 2004 report on vaccine safety, and pushed in the media by Dr. Paul Offit, of discouraging further research of possible vaccine autism connections as being contrary to the scientific method.

TutorVista also emphasizes the importance to scientific investigation of control sets:

Dr. Bernadine Healy, Dr. Julie Gerberding and Dr. Duane Alexander have all called for comparison of autism rates in vaccinated and unvaccinated groups. Those who oppose such research complain of costs and complexity. Some claim that the science is done, the evidence is in.

To this humble parent, and small town lawyer, it seems that the voices who have declared that the science is complete have in fact abandoned science when it comes to vaccine autism issues. Because of the important role played by vaccines in fighting diseases it is no longer acceptable to raise concerns about the chemical and biological agents which we inject, with increasing frequency, into the bloodstreams of our children. No one may ask whether autism, and other neurological disorders, may be triggered by these chemical and biological agents. No more research may be done on vaccine safety. The theory that vaccines do not contribute in any way to the onset of autism disorders will not be tested any further. Vaccine safety will be exempt, for public policy reasons, from further research or challenge as the scientific method contemplates.

Dr. Paul Offit is the high priest of the official public health religion that worships the golden calf of vaccine programs. In this religion no questioning of the golden calf will be permitted. The ultimate form of questioning, scientific investigation, will be forbidden.

The comparative studies of autism rates amongst vaccinated and unvaccinated populations will not be conducted.

If Dr. Offit prevails idol worship will replace scientific method.

autism

Autistic Children Still Languish on Ontario Wait Lists

2009-07-02T08:06:00.005-03:00

In Auton and Wynberg Canadian courts ruled, in essence, that autistic children do not have a substantive Constitutional right to effective treatment or education. It is up to government to decide whether autistic children in Canada will have access to evidence based effective treatment for their autism disorders or to a real education.

In Ontario the McGuinty government has demonstrated what happens when treatment and education are left to the whims of government. Five years after the Supreme Court of Canada decision in Auton many autistic children in Ontario still languish on waiting lists for IBI(ABA) treatment. Schools in Ontario are still toying with pilot programs and do not provide ABA based education for most autistic children.

The story of autistic children in Ontario is one that has been told throughout the ages - the weak, the vulnerable, and their families, must fend for themselves.

autism

Lead Babies and Autism: Does Lead Plus Mercury Equal Autism?

2009-06-29T08:10:00.013-03:00

Grandview Corners in Surrey BC is the location of a launch for the book Lead Babies by Joanna Cerazy, who has a Masters Degree in Educational Leadership a and Sandra Cottingham M.Sc. and Ph.D. and twenty plus years of classroom experience with regular students and students with special needs.

I have not yet read Lead Babies. The book is reviewed in an article by Alex Browne in the PeaceArchnews.com. Both educators noticed a rise in developmental problems including attention deficit disorder, learning disabilities, autism, delinquency and violence. They conducted research across a variety of research disciplines and concluded that lead was the culprit behind the increases of these developmental problems and disorders:

“We wanted to know what’s going on,” she said. “We started researching various toxins and realized that lead was causing it – that even a low level of lead exposure can cause very serious problems.”

While the toxic effects of lead have been known for years, Lead Babies gathers together the latest research concerning in utero transfer of lead from mother to baby, showing that lead – from a multitude of apparently harmless sources – can pass into the brain and other organs of unborn children.

The Alex Browne article indicates that there is also a section in the book dealing with mercury:

“But there’s a significant increase in the toxic effect of mercury when there is lead in people’s systems. There’s a synergistic effect. It’s a missing piece of the puzzle, one you might not see if you’re only looking at mercury. But lead is such a key piece.”

And lead is pervasive. It is all around us:

The lead industry is still flourishing, Cerazy and Cottingham report. Lead is an important component in many cosmetics, and is a key ingredient in plastics that are required to be bendable, including toys. It can even be found in some kinds of imported candy.

I do intend to read Lead Babies. I will be interested in seeing what the gathered research says about the harmful impact of lead on development. But I will pay particular attention to the section dealing with lead and mercury and their combined or synergistic effects.

Does lead and mercury equal autism? Lead Babies may not answer that question but it is not often that you see any mention of the possible synergistic effects of the many toxins with which we pollute ourselves ... and our children.

autism

Tell the People and Rulers of Iran that the World is Watching

2009-06-29T06:51:00.010-03:00

On twitter and on blog sites Bloggers Unite for a Free Iran today.

Tweet or blog your support today for the freedom seeking people of Iran.

It may not seem like much but each tweet and each blog tells the people AND the rulers of Iran that the world is watching. Hopefully someday the people will rule Iran.

Today I humbly express my support for the people of Iran in their struggle for freedom.

autism

Autism, Vaccines and Public Trust: AMA Votes to Continue Sit Down and Shut Up Approach

2009-06-27T05:18:00.022-03:00

The AMA has rejected a proposal by the American Academy of Child and Adolescent Psychiatry, the American Psychiatric Association, and the American Academy of Psychiatry and the Law that asked the AMA Council on Science and Public Health to review the most recent research on vaccines and autism.

In rejecting any further review the AMA is essentially telling people like Dr. Bernadine Healy, Dr. Julie Gerberding and Dr. Jon Poling that their critiques of the epidemiological study limitations or the desirability of conducting comparative studies of vaccinated and un-vaccinated groups are invalid or unworthy of consideration. In citing the three recent vaccine court decisions rejecting any vaccine-autism link the AMA makes no mention of cases like Banks and Poling where the government settled vaccine autism injury claims in favor of the plaintiffs. In rejecting any further review of a possible vaccine autism link the AMA has shown that it does not have a clue about how to restore public trust in vaccine programs.

The full resolution considered by the AMA proposed that:

the AMA reaffirm its support for universal vaccination,
asked the AMA Council on Science and Public Health to review the most recent research on vaccines and autism, and
urged the association to continue to support research into the etiology and treatment of autism.

The AMA rejected only the second element of the three part resolution. How it would continue support for research into the etiology and treatment of autism while preordaining that the etiology can not include consideration of the possible role of vaccines is beyond me. The AMA is apparently saying that "we don't know the causes of autism but we do know that the causes do not include any of the biological or chemical ingredients injected into your child's bloodstream." Not a very convincing position. Of course I am just a dumb, ignorant parent of a child with autism.

In addition to dismissing the concerns raised by some health care professionals and researchers the AMA is essentially telling the many parents concerned about possible vaccine autism connections that they should sit down, shut up and do as they are told by "the doctors".

The AMA is apparently unaware that the sit down and shut up approach to restoring public confidence in vaccine safety has not worked.

In continuing this approach the AMA has shown it lacks understanding of how to restore public confidence in vaccine safety.

In continuing this approach the AMA is ensuring the continuation of the vaccine-autism war.

autism

Iran's Brutal Military Dictatorship

2009-06-26T07:01:00.009-03:00

I am breaking from my usual commentary on autism to express some thoughts about Iran and the brutal suppression of the Iranian people by what is clearly nothing more than a military dictatorship. Even if one's life is affected by autism, as mine is with the severe autism of my youngest son, we still live in a larger world and can not simply ignore profoundly significant events.

I do not profess to be an expert on Iran, far from it. In my limited, ill informed understanding of Iran I had believed that it was a theocratic autocracy, a theocracy, which had begun experimenting with democratic processes. My vague, obviously ill informed, view of Iran has been shattered in recent weeks and days. I do not understand how any religious based government could unleash murders upon their own people. I do not understand how any legitimate government, and certainly not a government which professes to subscribe to one of the world's great religions, could decide to execute people like the beautiful young woman known as Neda, slain, murdered, executed by a cold blooded, cowardly sniper's bullet.

CNN has strengths and weaknesses as a news organization. One of its shining lights is unquestionably Fareed Zakaria, editor of Newsweek International, whose Sunday afternoon show on CNN focuses on intelligent, well informed discussion of international events with key world figures and analysts. This week Mr. Zakaria was questioned briefly by Wolf Blitzer about the events taking place in Iran. He noted that in the short term the people with the guns and money would probably prevail as they usually do ... in the short term. In the long run this could be the beginning of fundamental change in Iran.

When any government relies on guns alone to maintain control, to the point of executing their own innocent people with snipers' bullets, that government has only one ideology - power at any costs. That to me is the essence of a dictatorship, a military dictatorship. They can claim to worship God if they wish but what such a government really worships is the power of the gun.

Fareed Zakaria knows much more than I do about international affairs and events in Iran. He is probably right about the short term picture in Iran. In the long term though I hope the people of Iran achieve the freedom they are desperately seeking.

autism

Autism Treatment Study Using ABA and TMS - Repetitive Transcranial Magnetic Stimulation

2009-06-23T06:06:00.015-03:00

The University of Louisville has received NIH funding to conduct a clinical trial of an autism treatment that combines magnetic stimulation with ABA therapy. My first reaction when I read about magnetic stimulation as a possible autism treatment was to assume it was some wonky swimming with dolphins type of autism "treatment". But the University of Louisville news release provides an interesting explanation for the theory behind magnetic stimulation as a possible autism treatment.

A previous pilot study had shown that "repetitive transcranial magnetic stimulation (TMS), creates an electric current that enhances specific cells’ ability to protect the brain from sensory overload in one region of the brain". The researchers believe this eases sensory overload permitting greater focus on learning. The new study will use a higher frequency, twice the number of sessions and will also utilize ABA therapy.

Obviously TMS is not, at this time, an evidence based treatment for autism. The only way that new treatments can be developed and acquire an evidence based status is through study and experimentation. I assume that with the involvement of the NIH and the University of Louisville all necessary ethical and safety protocols for the participants will be followed. Hopefully the results will indicate a way to help enhance the learning abilities of persons with autism. As I read the press release the study may also disclose more information generally about brain connectivity issues and autism disorders:

NIH to fund U of L clinical trial of autism treatment

EUREKA award recognizes high impact, innovative research

LOUISVILLE, Ky. – A promising treatment of autism has earned National Institutes of Health funding for University of Louisville researchers. This award will fund a clinical trial that combines magnetic stimulation with behavior therapy in people with autism. Researchers believe this approach will ease major symptoms of autism, which in turn will help participants focus on therapy to improve social interactions.

“This study, which builds on discoveries made here at UofL in the last five years, offers a new kind of hope for people with autism. It has the potential to change science’s way of thinking about autism treatment,” said Larry Cook, UofL executive vice president for health affairs.

“We have focused on using our new understanding of brain function to treat autism, instead of using medications to remediate its consequences,” explained neuroscientist Manuel Casanova.

The $900,000 NIH award will fund a four-year clinical trial.

Casanova and a team of researchers previously mapped the way tiny strands of brain tissue called cortical cell minicolumns develop and connect. Their research suggests that minicolumn defects interfere with information processing because a lack of “sound-proofing” between minicolumns leads to sensory overload, which magnifies underlying social and communication deficits.

A pilot study confirmed that people with autism have fewer tantrums and repetitive behaviors symptomatic of sensory overload after a low-frequency magnetic field is pulsed around their brains through a coil placed near the scalp. This process, known as repetitive transcranial magnetic stimulation (TMS), creates an electric current that enhances specific cells’ ability to protect the brain from sensory overload in one region of the brain.

“Neurological and psychological test results and brain activity measurements tell us that TMS helps with the symptoms that people with autism find most distressing,” Casanova said. “We believe that relief will give them the opportunity to learn to be more social adept and emotionally responsive.”

In this trial, patients will receive a higher frequency of magnetic stimulation and more than twice the number of sessions administered in the pilot study. This treatment will be paired for the first time with applied behavior analysis (ABA) to help participants learn and practice socially appropriate methods of relating to other people.

This study also makes use of new understanding about the brain’s innate connectivity. The brain of a person with an autism spectrum disorder is structured to make short, local connections between minicolumns as it processes information. The TMS treatment focuses on cells in specific regions of the brain and then relies on the cells’ connectivity to communicate the change to other regions.

“This connectivity allows us to train other regions of the autistic brain to manage the noise that causes sensory overload without sacrificing the talents that result from the natural brain structure,” Casanova said.

The National Institutes of Health’s EUREKA (Exceptional, Unconventional Research Enabling Knowledge Acceleration) program funds researchers who are testing exceptionally novel, unconventional research that could yield an extremely high impact on research.

Researchers are targeting children from the Louisville metropolitan area for this trial. Parents who want to inquire about the study should call 502-852-0404.

autism

Characterizing ABA Treatment for Autism as Experimental is Arbitrary and Capricious

2009-06-22T13:40:00.015-03:00

Anti-ABA activists at the Universite de Montreal and elsewhere in Canada and the US will probably be upset over the news that Blue Cross has settled a lawsuit brought in Michigan reimbursing parents of autistic children for the costs they paid out for ABA treatment for their autistic children.

As indicated by Jon Hood on the Autism News, Blue Cross had initially defended the suit on the basis that ABA was experimental and therefore not required to be provided under their health insurance policies. Lawyers for the parent plaintiffs in the case "argued that characterizing ABA as experimental was arbitrary, capricious, and possibly even illegal."

Some choice remarks from the article at the Autism News:

"Blue Cross acknowledged in a 2005 draft policy that ABA is anything but controversial. That draft explicitly noted that ABA is “currently the most thoroughly researched treatment modality for early intervention approaches to autism spectrum disorders and is the standard of care recommended by” a number of professional organizations, including the Association for Science in Autism Treatment.

Additionally, as the draft pointed out, the earlier the treatment is applied, the better the child’s prognosis for a normal and productive life.

During a court deposition, Dr. Calmaze Dudley, Blue Cross’s medical director, said that he would “probably” employ the therapy if he had a child with autism.

Fortunately for Canadian autistic children the same American studies and reviewing agencies referred to in the Autism News report have provided the foundation for much of the successful parental advocacy for ABA coverage that has occurred in some Canadian provinces.

Unfortunately the Canadian government still refuses to get involved in helping autistic children across Canada. While the Canadian Institutes of Health Research have no qualms about funding the recent study proving that high functioning autistics are up to 40 percent faster at Raven's Standard Progressive Matrices (RSPM) problem-solving than non-autistics it doesn't spend a single dime to ensure that autistic children in Canada receive the ABA treatment that even American commercial health insurance providers acknowledge is the the most thoroughly researched treatment modality for early intervention approaches to autism spectrum disorders.

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Does Exclusion of Low Functioning Autistics from Autism Research Distort Public Understanding of Autism Disorders?

2009-06-22T06:10:00.014-03:00

Why are Low Functioning Autistic persons excluded from autism research as in the recent study purporting to show that autistics solve some problems faster than non-autistic persons? To me it seems like "cherry picking" the participants as Roger Kulp called it in a comment about the Soulières Mottron Dawson study:

"could someone remind me what they mean by "additional neurological condition"? Seizures? Nonverbal learning disabilities? Sterotypy or self mutilation? Developmental delay ?You don't have to be low functioning,you just have to be a nonaspie to be excluded from a lot of these studies.

By cherry picking your subjects like this,you can exclude and distort all you want.

In both the articles about this study,and the ones about the 2007 study,they make a point of saying that at least 40-50 % of all "autistics" are not learning disabled,and imply we should focus on the ones that don't.There is an obvious neurodiversity/aspie bias in the media."

Roger's comment suggests that the exclusion of low functioning autistic persons from autism research might be done, intentionally, to misrepresent the nature of autism. In essence Aspergers is substituted for "autism". The many low functioning persons with Autistic Disorder can now be considered to have separate co-morbid conditions which are not really part of true "Aspie" autism.

The exclusion of low functioning autistic persons from autism research is followed by their exclusion from research press releases and from the public understanding of autism. Perhaps that is the ultimate goal of researchers Soulières, Mottron, and Dawson when they cherry pick participants for their "autism" research.

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Autistics Faster at Problem Solving? Low Functioning Autism Subjects Excluded from Soulières Mottron Dawson Study

2009-06-21T05:51:00.015-03:00

The mainstream media is buzzing about a study by lead author Isabelle Soulières, a post-doctoral fellow at Harvard University who completed an experiment at the Université de Montréal which, according to a U de M press release, purports to find that "autistics are up to 40 percent faster at problem-solving than non-autistics".

The press release states that the study participants "were asked to complete patterns in the Raven's Standard Progressive Matrices (RSPM) – a test that measures hypothesis-testing, problem-solving and learning skills". An image from the test is provided in the U de M press release:

The U de M press release, which by definition is intended for consumption by media outlets, for dissemination to the general public, refers to "autistics" and "autism" but not once to the specific diagnoses of the participants or to their functioning level. The study report itself, which requires purchase by non-subscribers and takes more effort to locate than the press release, also refers generally to autism and autistics. The study even uses those terms to refer to footnoted articles which in their titles specify that the subject of the article is high functioning "autistics".

The study report, and the press release, insist on referring to "autistics " and "autism" as though the study referred to all persons with autism disorders. It is clear from the characteristics of the participants as identified in the study itself however that they were all High Functioning Autistics. Low Functioning Autistics were excluded from the study:

TABLE I. Participant characteristics

Based on the IQ information provided in the study report there were no persons with Low Functioning Autistic Disorder included in this study. It seems strange that a study which includes Dr. Laurent Mottron as a co-author would not specify their functioning level -Low Functioning Autism or High Functioning Autism. Dr. Mottron has published many study reports over the years in which he took great care to identify the participants as Low Functioning or High Functioning, Autistic Disorder, Aspergers and, in some cases, Autistic Savants. His studies focused almost exclusively on persons with Aspergers and High Functioning Autism as any check on Google Scholar can confirm. This paper does make it clear that persons with Aspergers were excluded from the study but offers no mention of the exclusion of persons with Low Functioning Autistic Disorder below the 100 IQ range. (The paper does not actually refer to the specific diagnosis of Autistic Disorder referring instead to "autism").

Dr. Mottron has tended to exclude low functioning autism subjects from his studies but he has in the past made it clear that his study participants were high functioning. This study by Dr. Mottron and his colleagues again focuses on high functioning autistic persons but obscures that fact for general media and public consumption.

Perhaps someday Dr. Mottron will cease excluding low functioning autistic subjects from his studies.

In the meantime it is difficult to see why a study which excludes low functioning autism subjects should be used to make broad statements about the abilities of autistic persons on all points of the autism spectrum of disorders.

In the meantime I humbly suggest that the U de M press release be modified to read:

" high functioning autistics are up to 40 percent faster at Raven's Standard Progressive Matrices (RSPM) problem-solving than non-autistics".

autism

FDA Warns of Possible Autism and Depakote Link

2009-06-19T20:43:00.009-03:00

The Dow Jones Newswire today reports an FDA warning of a possible link between autism and Depakote, a drug used to treat seizures, migraines and bipolar manic episodes:

In a review of Depakote, the agency said it identified six reports of developmental delay in children that were not related to birth defects, including two cases of autism in one family. However, the agency said, "other factors such as genetic and environmental factors may have played a role, especially in the two sibling cases coded as autism."

Agency staff said birth defects are well described in the drug label, but said developmental delays and learning disabilities are not mentioned.

autism

Book Review of a Flawed and Mean Spirited Autism Book

2009-06-18T21:24:00.022-03:00

Book reviews are not where I would expect to find a good understanding of autism spectrum disorders or the quirky neurodiversity anti-cure ideology which demonizes parents seeking to help their children but there are always exceptions. A review by Professor Guy Dove of Wendy Lawson's Book Concepts of Normality The Autistic and Typical Spectrum is one such exception. Mr Dove is a Ph.D., Assistant Professor, Departments of Philosophy and Psychological and Brain Sciences, University of Louisville and his review of Lawson's book is balanced, objective and informative. It sees some merit in the principle author's view of autism as natural variation but also summarizes vary succinctly some of the flaws. Somewhat surprisingly Professor Dover points out the nastiness of two contributing neurodiversity writers in the book including ... no surprise here ... the "joy of autism" neurodiversity blogger Estee Klar (Wolfond).

While Dove finds some merit in what Lawson has to say about viewing autism as part of the natural variation of humanity he suggests that she takes the position too far, relying on unsupported generalizations, ignoring the very real medical challenges of autism and ignoring the various subtypes of autism. His sharpest criticism though is with the lack of empathy shown towards parents seeking biomedical and behavioral treatments for their autistic children. While Lawson demonstrates this lack of empathy the two guest writers Dinah Murray and Estee Klar (Wolfond) are stated to be more pronounced in their hostility and Professor Dove provides some direct quotes to illustrate their nastiness towards parents seeking to cure their autistic children:

"The guest authors, on the other hand, seem openly hostile to such parents. Murray sarcastically remarks, "Some Others [members of the typical population] weep and moan and deplore their autistic child's existence; they wallow in self-pity and congratulate each other on how Truly Dreadful it all is." This statement illegitimately paints a diverse group of people with a broad brush and seems to be little more than a mean-spirited attempt to silence critics. Klar-Wolfond is not much better. In her discussion of the admittedly questionable practice of using scientifically unsupported biomedical therapies, she offers the following rhetorical question, "And to make them what? -- better at maths, quicker on the sports field, or well-mannered?" This is doubly insulting to parents of children who have tried such therapies. First, it belittles their concern. The suggestion is that parents are merely trying to get their children to "act normal" when in fact they are often trying to ameliorate severe challenges with respect to communication and social interaction as well as other difficulties including debilitating anxiety, painful gastrointestinal problems, insomnia, and even violent behavior. Second, it denigrates their reasoning. Many parents who try such therapies agonize over their decision. Although some of these therapies have potentially harmful side effects, most do not. When Klar-Wolfond lumps together treatments as diverse as supplements and detoxification therapies, she is being both misleading and unfair."

Mean spirited? Misleading and unfair? Standard fare from autism's anti-treatment, anti-cure ideologues.

autism

Autism Severity

2009-06-17T04:34:00.032-03:00

The DSM V committees drafting revisions to the manual are considering distinguishing between autism disorders based on severity or level of functioning. Some autism "self" advocates have long complained about distinguishing between functioning levels of autism disorders based on functioning labels - HFA, high functioning autism, or LFA, low functioning autism. Some object to the division of autism disorders according to severity.

The DSM-IV already implicitly recognizes these differences by specifying with respect to Aspergers Disorder that:

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

Language, cognitive development, age-appropriate self-help skills, adaptive behavior (other than in social interaction and childhood curiosity about the environment are all basic elements of functioning in the "environment" .... in the real world. By definition persons with Aspergers Disorder diagnoses do not lack these important elements of real life functioning ability. The criteria for Autistic Disorder by contrast is based in part on the presence of some or all of these components of real life functioning. The persons who suffer from Autistic Disorder are by definition more severely affected by autism deficits than persons with Aspergers Disorder.

My son Conor is severely autistic. That is a fact of life with which we have to deal every minute of every day. He does not possess the communication skills or understanding of the world displayed by Michelle Dawson, Amanda Baggs or Ari Ne'eman. These people can communicate with the world and demonstrate intellectual skills and understanding of the world far beyond what can be imagined for my son. It is silly, just plain silly, and nothing more than that, to pretend that there are not significant differences in functioning levels and understanding between these three examples of high functioning autistic persons who have spent much time in front of television cameras articulating their views of autism disorders and the world and my 13 year old son who reads Dr. Seuss and can not, for his own safety, be left unattended.

As I understand from the Internet Ms Baggs was either at, or about to enter, a college for gifted youth at a similar age. Ms Dawson is a person who, in addition to being an excellent letter carrier in the very challenging world of Canada Post, was able to become an autism researcher, make representation to the Supreme Court of Canada (where she opposed government provision of ABA treatment to autistic children) and to a Canadian Senate committee examining autism treatment and funding issues. Ari Ne'eman is the head of an organization based in Washington DC who regularly appears before cameras, and meets with political and public bodies, declaring on behalf of all autistic persons, including presumably my son and other autistic persons like Jake Crosby and Jonathan Mitchell, that "they", autistics, do not want to be cured.

As a parent of a much more severely affected son with autistic disorder I am tired of the silly attempts to deny the obvious differences between those who can function well like Dawson and Ne'eman and those like my son who require 24 hour supervision. I have visited adult autistic persons living in psychiatric facilities in New Brunswick who can not function in the real world AT ALL let alone make representations to judicial, political and legal institutions or engage in autism research or advocacy.

My son can not speak to the world. But Ari Ne'eman, Amanda Baggs and Michelle Dawson do not speak for him. They do not share his realities. They are not affected by autistic disorder as he is and they show no real awareness of the very real differences between his reality and theirs in their sweeping generalizations about autism and what "autistics" want.

The DSM V committee attempt to distinguish between levels of autism severity or functioning is a step in the right direction. Look for a determined effort from Mr Ne'eman, Ms Baggs and Ms Dawson, and their followers, to oppose that direction. After all, if the obvious differences between high functioning persons with autism and those, like my son, who do not enjoy their gifts, are expressly acknowledged, the self appointed "self" advocates ability to speak on behalf of those much less fortunate autistic persons would be seriously diminished in the eyes of the public and more importantly in the eyes of reporters from the CBC, CNN, the New Yorker Magazine and Newsweek who cater to their wishes.

Focusing on differences in autism severity would, however, bring needed attention to the challenges faced by the severely autistic some of who currently live out their lives in institutions. A couple of years ago a middle aged autistic woman in New York was regularly abused by staff but could not communicate with the world to tell of the abuse. The matter came to light because of a conscientious staff member and video recordings which captured some of the abuse. The plight of that woman, her life challenges and realities, are much different that those of the high functioning autistic media stars who barely acknowledge the existence of the severely autistic and do not display any understanding of their realities.

If the DSM V does differentiate between autism disorders based on functioning levels, or severity levels, it will be a much needed step toward helping those severely autistic who can not speak for themselves. It will help to ensure that their needs, so different than those of media trotting, high functioning "self" advocates will be met. It will be a much needed step in the right direction.

It is time for the low functioning, severely autistic, to be acknowledged and their needs addressed.

autism