CBC News Misrepresents Autism By Omitting Any Reference to Intellectual Disability

In "The  new definition of autism" CBC News provides detailed descriptions of autism as represented by the five pervasive developmental  disorders in the DSM-IV and the Autism Spectrum Disorder in the now published DSM5.  With one major exception the article is a good summary of autism disorders pre and post DSM5. On another positive note the article expressly references ABA/IEBI as the primary evidence based intervention for autism treatment.  The major exception to this otherwise balanced, thorough article is the failure to mention, while describing conditions commonly associated with autism,  the substantial numbers of  persons with autism who also have an intellectual disability:

"What are some of the symptoms of ASD?

There is no single symptom that would lead to a diagnosis of autism. But someone who shows a number of the following characteristics and behaviours would likely be diagnosed with an ASD:

• Shows no interest in other people
• May be interested in people, but does not know how to talk, interact with or relate to them
• Has difficulty initiating and maintaining a conversation.
• Is slow developing speech and language skills, which may begin to develop and then be lost, or may never develop fully.
• Has difficulty interpreting non-verbal communication such as social distance cues, or the use of gestures and facial cues, like smiles, that most of us take for granted.
• Repeats ritualistic actions such as spinning, rocking, staring, finger flapping, and hitting oneself.
• Has restricted interests and seemingly odd habits, like focusing obsessively on only one thing, idea or activity.

As well, people with ASD may have secondary problems such as:

• Neurological disorders including epilepsy.
• Gastro-intestinal problems.
• Fine and gross motor deficits.
• Anxiety and depression.

Children with ASD develop motor, language, cognitive and social skills at different rates from other children their age. For instance, they may be very good at solving math problems but have great difficulty making friends or talking."

The only reference to intellectual or cognitive disabilities in the CBC News article is in the last paragraph above which implies that cognitive skills may develop at different rates in conjunction with other skills and immediately mentions possible strengths such as solving math problems.  This is not by any means a clear and accurate representation of the intellectual disability that is present in large numbers of persons with autism. 

The CDC in the United States has estimated the numbers of persons across the autism spectrum who also have intellectual disability in the range of 41-44%:

• Data show a similar proportion of children with an ASD also had signs of intellectual disability than in the past, averaging 44% in 2004 and 41% in 2006.

The CDC estimates are consistent with other estimates of the "co-morbidity" of autism and intellectual disability that I have posted links to on this site.

There is no legitimate reason to ignore the large numbers of persons with autism disorders who also have intellectual disabilities.  It is a relationship that should be explored and studied (La Malfa)  not hidden  and stigmatized.

Read more »

Conor's Physiotherapy With CBC's Terry Seguin

Conor is still recovering from Rhabdomyolysis, an adverse reaction to anti-seizure medication, Lamotrogine and needs phsyiotherapy to rebuild his damaged muscles, balance and co-ordination.  Just being home is a huge help for Conor, back home with Mom, Dad, his brother and his familiar routines.  One of those routines has been to get out of bed every morning at 6 am.  If he is awake at 5:30 he stays in bed until 6. That is his routine and Conor has a classic autism need for routine.  When he gets up each morning his routine has also included turning on the television and watching  "CBC Terry Seguin".   

Conor has been sleeping on a living room couch since his return so I could be nearby on our other couch to keep an eye on him in case he was in distress. This morning I was in the adjacent kitchen when I heard some loud walking noises in the living room and went in to find that Conor had walked from the living room to the television to turn on CBC Terry Seguin.  Conor has been very wobbly on his feet and he has a long way to go towards recovery so I was startled to see him at our big screen TV.  I was happy though that he had done so without falling and hurting himself. It was a sure sign of progress in his recovery.  His CBC Terry Seguin television walk demonstrated improvement physically and showed that Conor will not stay down, he will keep walking until he is fully recovered.  Two thumbs up for Conor ... and for Terry Seguin!

Read more »

CBC: Autism advocate questions 'extreme' inclusion model

The caption below the picture of me and Conor is from the CBC web site article Autism advocate questions 'extreme' inclusion model.

"A high-profile autism advocate in New Brunswick is questioning the merits of what he calls the Department of Education's extreme inclusion model. “I believe that the kind of evidence-based intervention that we need for our children, in some cases children with autism, is absolutely necessary and to deny it is a denial of the human rights, basically, of children like my son,” he said. Doherty was responding to a recent statement written by Gordon Porter, the former head of the New Brunswick Human Rights Commission.

Harold Doherty, who has an autistic son and runs a blog dedicated to autism issues, contends the classroom isn't the right setting for every child. Porter, who has played a key role in the province's approach to inclusive education, wrote on a Canadian education website that some interventions in the school system result in segregation and pose a challenge to inclusive education. Doherty, however, argues that’s based on philosophy, not evidence.

He is challenging Porter to a public debate on the issue."

Following is the CBC audio clip of my interview by CBC's Terry Seguin.

Read more »

CBC: New Brunswick Lacks Residential Care for Adults with Autism

Emma Smith and CBC did a feature (at minute 23:40)  on last evening's news on the lack of residential care available for New Brunswick adults with autism.  I was interviewed along with some other parents and staff from the Autism Connections Fredericton community autism centre.  Paul McDonnell, Ph. D., UNB Professor Emeritus (Psychology), clinical psychologist and mentor to many parents of autism children, was also interviewed.  

Paul McDonnell is the autism expert who helped educate many parents of newly diagnosed autistic children, including me, about the benefits of evidence based interventions for our children.  He really has been the intellectual force behind the progress that New Brunswick has made in early intervention and education of NB children and students with autism.  While the progress in early education in particular, and in our schools to a lesser extent, has been significant, no progress whatsoever has been made in developing an appropriate residential care system for New Brunswick adults with autism disorders.  Paul McDonnell talks about the need for a high end facility, one which would incorporate a variety of arrangements to accommodate adults from different points on the autism spectrum.  He also points out that as much as $500,000.00 a year is being spent to provide care for just 1 New Brunswick adult with autism ... at the Spurwink facility in Maine.  He points out it would make economic sense to design and construct a facility which could be designed to provide community integration here in New Brunswick. 

The struggle for improved autism services in NB has been taking place in a serious fashion over the last 12 years. During that time activist parents advocated, argued, struggled and fought for evidence based early intervention for autistic children.  We had some success, albeit not total success, in obtaining 20 hours of government funded intervention for autistic children aged 2-5.  Some gains have been made in our schools although much, much more effort is need there. No progress though has been made for adults with autism in New Brunswick. 

Government drags its feet on adult autistic care for a number of reasons.  In my experience as an autism advocate it is easier to get public attention for the need to help children then it is to attract their concern over autistic adults. It seems to be a natural inclination for people to be stirred more easily to help children than adults.  There is also the fact that once in the care of government autistic adults are out of the public eye. Out of sight, out of mind. The government can, and will, cite privacy reasons of the autistic adult as a reason for refusing to disclose information about them.  The most extreme examples of the privacy issue being used in this way is taking place right now in Ontario where that government has sent its lawyers in to action to prevent disclosure of information in the two inquests, including the Ashley Smith and G. A.  inquests.  In those cases the government is arguing against disclosure of information about what happened to these two youths, purportedly to protect their privacy,  even though they are now dead. 

In New Brunswick a huge obstacle to development of an autism specific residential care and treatment facility is the opposition of the very influential NB Association for Community Living.  Community living cliches are pulled out at every discussion of adult care issues. "No bricks and mortar" solutions is the cry of the community living advocates who believe that all problems are solved by dumping adults, including severely autistic adults, into privately owned group homes.  The powerful and influential people who subscribe to this ideology are well connected to cabinet ministers, the Human Rights Commission, the department of education, schools and school districts,  even the Ombudsman and Youth Advocates office. As long as we all go to bed at night repeating "community", "inclusion" and other cliches over and over again until we fall asleep all will be well.  But there will be no talk of "institutions' ... or any other facility that might be needed to help autistic adults.

No serious thought is given to providing the residential care and treatment that many with autism will require throughout their adult years. In fact active resistance emerges at events like the Ombudsman and Youth Advocate office's recent  Complex Needs consultations, in which I participated,  to any discussion of a facility that might provide the expertise, security and access to autism specific programs required by autistic adults.  

It is not cash that is preventing adequate residential care for autistic adults in New Brunswick. Huge sums are being sent to export our autistic adults to the United States. The "bricks and mortar" of buildings that might be necessary to provide residential care and treatment are not the problem either.  The real problem is the "bricks and mortar" that encases the thinking of the community living adherents who have subscribed to the same  ideology for decades and refused to consider the needs of severely autistic adults.  Their philosophy has ruled New Brunswick with an iron fist for decades even though the failure of that rigid philosophy is evidenced by the people with autism living on general hospital wards, in psychiatric institutions, in specialized facilities in Maine and other provinces, in hotel rooms and even on the grounds of youth correctional facilities. 

In truth we all want our children to remain as integrated as possible in our communities, as close as possible to our families.  As a parent though I know that talking about community and inclusion does not address the need of some autistic adults for expert care, for expert based continuing education and recreation opportunities and for security.  These requirements, for some, can not be provided in a small, privately owned group home. We need a facility close to autism expertise such as exists at UNB and at the Stan Cassidy Centre to provide appropriate life arrangements for our autistic loved ones as adults.   

The need is painfully obvious to parents who see their adult children sent to live in general hospital wards, psychiatric hospitals .... and facilities in another country.  New Brunswick needs to fill the gap between the inadequate group homes and hospital institutions and provide a modernized autism  facility to accommodate the needs of out adults with autism.  Here in Fredericton we have developed some behaviorally based autism expertise of note. It is time for the community living adherents who are so influential in our government institutions in New Brunswick to let go of their rigid and dated perspectives,  to loosen up and let the needs of autistic adults be addressed with modern evidence based solutions, with facilities that can provide security, expertise, education and recreation in as community integrated a manner as the circumstances served by those facilities  permit.  

Read more »

An Enhanced Autism Group Home System and Center is Needed to Fill the Gaping Gap in New Brunswick's Autism Service Model

In ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services" New Brunswick, Canada  was recently described by David Celiberti Ph.D., BCBA-D, President Association for Science in Autism Treatment as being a leader in the provision of autism services.

Responding to the referenced  title of a CBC article on the state of autism service delivery in NB Dr. Celiberti expressed the view, with which this humble father and autism advocate agrees, that  NB is a leader in providing evidence based effective preschool intervention and  education of autistic children.  Dr. Celiberti goes on, however, to point out correctly, as did the CBC article written by Paul McDonnell a leading New Brunswick autism expert, Professor Emeritus (Psychology) and clinical psychologist working with autistic children, that New Brunswick is still lacking in adult autism services. 

In fact New Brunswick has no autism specific youth and adult residential care system.  Instead NB autistic youth and adults who require residential care services are placed in general group homes with no autism specific staff and no professional autism specific expertise readily available.  For those who require autism specific treatment the situation becomes horrendous with some youth being placed on the grounds of correctional facilities, some youth and adults living in hotels, hospitals wards and psychiatric institutions. Some are exported out of the province and out of the country.  

In his CBC comments Dr. McDonnell provides clear direction on what is needed to fill the adult service gap in New Brunswick's autism service delivery model:

"In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family, or the community.


We can do much, much better.


We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision.


That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.


Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.


The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

An enhanced autism specific group home system throughout the province with a major center, providing ongoing training, leadership and supervision, as recommended by Dr. McDonnell is exactly what is needed to fill the gaping gap in New Brunswick's autism service delivery.  Autism advocates, including me, have advocated for enhanced autism specific group homes and a center for several years but government has not responded.

In New Brunswick, parents, politicians and civil servants stepped up to the plate and became a leader in helping autistic children.  Surely we can do the same for our autistic youth and adults.  Surely we can provide decent, secure, modern living environments for our vulnerable autistic youth and adults in need.

Read more »

Association for Science in Autism Treatment: New Brunswick (Canada) is Already a Leader in Autism Treatment

During the recent election campaign CBC published on its web site an article by New Brunswick autism expert Dr. Paul McDonnell. The CBC headline read “N.B. Can Be a Leader in Autism Services" and the article appeared on September 14 2010.   David Celiberti BCBA-D, President Association for Science in Autism Treatment, commented on that article pointing out that New Brunswick is already a leader in autism services. Dr. Celiberti is very familiar with New Brunswick's autism service delivery, having spoken in Fredericton and having met with parents, autism advocates and autism professionals here.  His comments on the CBC article can be found on the ASAT website under the title ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services" and are set out following this introduction. (The bold blue emphasis is added by me - HLD)

ASAT's recognition and encouragement to continue in our efforts here in New Brunswick are most welcome.

"ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services"

Saturday, October 23, 2010

I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.

There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.

And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.

It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.

Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.

David Celiberti, Ph.D., BCBA-D, President

Association for Science in Autism Treatment

Read more »

New Brunswick Leads in Preschool & Student Autism Services But Adult Autism Needs Must Be Addressed

Autism expert Paul McDonnell Professor Emeritus (Psychology, UNB), Clinical Psychologist, and  a  major force behind the great progress that has been made in provision of preschool and school autism intervention and education services in New Brunswick,  has provided expert analysis of autism issues to the CBC. In two features, Paul's analysis, and his interview by CBC reporter Dan McHardie, Paul speaks about the leadership role New Brunswick has taken on in providing excellent preschool and school autism services but also points to  the need to address youth and adult autism needs including adult care residential needs as set out in the interview:

"Our greatest need at present is to develop services for adolescents and adults," McDonnell writes.

"What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists."

...

"In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership.

The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"Such a secure centre would not be based on a traditional 'hospital' model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development," he writes.

"The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."

Read more »

Autistic Boy Found After 2 Days of Wind and Snow

An autistic Nova Scotia boy, James Delorey, has been found after 2 days of cold, snow and wind has been found. CBC reported he was on his way to hospital. On television news CBC is reporting that he is in critical condition with hypothermia.

autism

Read more »

Neurodiversity's Extremist Autism Cure Opponents - By What Right Do They Object?

The declaration has been made by celebrity "autists"or "autistics" like Michelle Dawson, Amanda Baggs, Ari Ne'eman and various Neurodiversity bloggers that ""We", persons with autism spectrum disorders, do not want to be cured".

These persons with mild autism spectrum disorders, including Aspergers, routinely declare that "autistics" do not want to be cured, should not be cured, and in fact can never be cured. Their implied claim to omniscience aside, by what right do these people purport to speak on behalf of other people's children, on behalf of people much more severely affected by autism disorders than they with whom they have little in common, and even on behalf of higher functioning autistic persons who oppose their ideological opposition to curing autism?

The same people who object to Autism Speaks, who turn out in massive droves of 5, 6 and even 7 people to protest at large Autism Speaks rallies of thousands of parents and autistic people, and who dwell in the lavish attention of CNN, the NYT, CBC, the New Yorker and other mainstream media outlets, demand the right to impose their ideological opposition to autism cure on my severely autistic son and the children of other people with autistic children. On what grounds do they claim this right?

Do I have the right to demand that Ari Ne'eman seek a cure for his very high functioning Aspergers? Do I have the right to tell Michelle Dawson who excelled in the challenging work environment at Canada Post, appeared as an "autistic" in the Supreme Court of Canada and before a Canadian Senate committee to oppose ABA for autistic children in Canada that she must seek a cure for her unspecified autism spectrum disorder? Do I have the right to tell Amanda Baggs, the author of many very sophisticated disability essays on autism and other medical conditions and the producer of videos depicting what she considers autistic stimming, that she must seek a cure for her autism spectrum disorder?

The answer, of course, is NO. And Ari, Michelle, Amanda and other ideological opponents of curing autism have no right to oppose or interfere with attempts by families, governments and society to cure their own autistic children or to cure those autistic adults like Jake Crosby and Jonathan Mitchell who seek cures for themselves.

I have a message for Ari, Amanda and Michelle: I do not seek to cure you of your Aspergers or high functioning autism disorders. Do not claim the right to speak on behalf of my severely autistic son. You have no right to interfere with efforts by me, or other parents, seeking to help or cure our autistic children. None at all.

Someday, hopefully, even if you do not, the dilettante autism journalists at the NYT, the CBC and other MSM outlets will come to understand that you are interfering with the basic rights of families and parents to help their own children.

autism

Read more »

Autism Priorities and the DSM V: Media Ignores Invisible, Severely Autistic in DSM V Discussions

The invisible autistics, the severely autistic, those with Autistic Disorder, profound developmental delays, cognitive and intellectual deficits, those who can not live independently, who live on hospital wards and in large, antiquated psychiatric institutions do not make regular appearances in the New York Times and its junior Canadian cousin the Globe and Mail. Nor do they appear regularly on the various CBC television and radio shows that have fawned over Michelle Dawson, Amanda Baggs and more recently Ari Ne'eman.

In the big, mainstream media discussions, and opinions about the proposed changes to the developmental disorders section in the DSM V nothing has changed. Ari Ne'eman and other barely autistic, very high functioning persons with Asperger's Disorder continue to receive all the considered attention of the big media while the severely autistic remain, as always, invisible. There is scant mention in any of the mainstream media commentaries of those whose lives are most severely restricted by autism disorders. The Globe and Mail breathes hot air about "a culturally rich autism" while ignoring those severely autistic persons living in institutional care throughout Canada.

Plus ça change, plus c'est la même chose

autism

Read more »

Autism Awareness - Ari Ne'eman Confesses

"My identity is attached to being on the autism spectrum"

Ari Ne'eman, New York Times, Nov 3, 2009

If you ever wondered why some autism self advocacy groups like ASAN, and some self advocacy leaders, like Ari Ne'eman, protest and exert pressure to prevent discussion of the harsher realities faced by low functioning persons with autistic disorder, particularly those with Intellectual Disabilities, you now have the answer.

Ari Ne'eman and some other autism spectrum self advocacy groups who protest realistic depictions of persons with low functioning autistic disorder like to identify with autism but not with those who live in institutional care or otherwise lack their own considerable intellectual, communication, social .... and ... self promotion skills. Parents talking about the harsh realities of their own children's severe autistic disorders just isn't a feel good experience for the very high functioning Ari Ne'eman and other "autism spectrum self advocates".

Fortunately for Ari and company the New York Times, the New Yorker, CBC and other mainstream media are happy to indulge their whims as the NYT almost confessed in A Powerful Identity, a Vanishing Diagnosis :

Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.

I say almost confessed because while the NYT points out that Asperger's has exploded into popular culture through books and films it does not mention that media organizations like the NYT, the New Yorker and CBC, also dote on the Asperger's and High Functioning Autism end of the spectrum while ignoring the harsh realities of those with severe Autistic Disorder. The result, with organizations like Autism Speaks bowing to pressure from groups like ASAN, is that the most severely autistic persons remain hidden from public view in institutions or in their parents' homes ... they remain the Invisible Autistics. Meanwhile Mr. Ne'eman, barely autistic, revels in the media spotlight ... his identification with his own self defined autism spectrum intact.

autism

Read more »

New York Times Examines Autism and the DSM V, From an Aspie Perspective, Of Course

Perhaps the New York Times is about to shock me and publish an article discussing potential changes to the "autism spectrum" of disorders in the DSM V from the perspective of the impact such changes might have on the lives of those with severe autism, from the perspective of low functioning persons with Autistic Disorder, like my son, Conor Doherty. For now though, like almost every mainstream media article or opinion piece discussing the "autism spectrum" it has done so from the perspective of those on the High Functioning end of the spectrum. The NYT mentions, but does not explore, the impact on the more severely affected of proposed changes to the "Autism Spectrum" of disorders in the DSM V.

In A Powerful Identity, a Vanishing Diagnosis the NYT focuses on the possible loss of the "Aspergers" label by inclusion of Aspies in an autism spectrum divided by levels of severity without reference to the Aspergers label. Ari Ne'eman is referenced talking about the importance to him of being on the Autism Spectrum:

"My identity is attached to being on the autism spectrum, not some superior Asperger’s identity. I think the consolidation to one category of autism spectrum diagnosis will lead to better services."

The NYT has, once again, found it within itself to discuss autism in terms of the most fortunate amongst the "autistic", those for whom one of the most serious issues is a question of identification with one label as opposed to another. The NYT, as it and the mainstream media at large, almost invariably do, provides little comment on the lives of the most severely affected by autism disorders, the many persons with Autistic Disorder who are low functioning, some with Intellectual Disabilities, some who do not understand the world in which we live on anything but the simplest level, some with very limited comprehension of language ... some of whom live out their lives in residential and institutional care.

The New York Times did mention that the proposed changes to the DSM will possibly include express description of various conditions which often accompany autism disorders, such as "anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise". The Times studiously avoids any express reference to the persons with Autistic Disorder and Intellectual Disorder. A sure sign of the success of the High Functioning Autism and Aspergers groups efforts to prevent any discussion of autism in connection with intellectual deficits.

The NYT quotes Dr. Temple Grandin on the dominance of the Aspergers advocacy groups in dominating public discussion of autism: The Asperger community is a big vocal community, "a reason in itself” to leave the diagnosis in place. For many parents and family members of severely autistic children Dr. Grandin's comments are not news.

This NYT piece itself reflects the domination of autism in the public mind by Aspergers and High Functioning Autism and the exclusion of the Low Functioning, Intellectually Disabled and severely autistic persons with Autistic Disorder.

Organizations such as Autism Speaks are routinely targeted by the big vocal Asperger community for realistically and honestly depicting the life challenges faced by the severely autistic. An even bigger indication of Asperger community dominance occurred when Autism Speaks "kow towed" to this community and pulled its "I Am Autism" video from its web site.

For the NYT, and for Autism Speaks, it is now far more important to talk about Ari Ne'eman's sense of identity than to talk about the severely autistic children who go missing or those who live their lives dependent on the care of others.

autism

Read more »

Important Autism Reminder: There Are Autistic Persons Living In Institutional Care, Let Us Not Forget Them

It is a fact that does not appear to have permeated the consciousness of CBC and other mainstream media but there are autistic persons living in institutions in Canada. These autistic persons are not likely to appear on CBC television proclaiming that they do not want to be cured. They will not appear on CBC television proclaiming the joys of being Posautively Autistic. For that the CBC's autism journalism dilettantes would have to actually visit such an institution and observe these autistic souls and their actual lives. Pretty scary stuff for the CBC autism journalists who prefer to get their autism education at a Toronto art gallery autism project.

The CBC would prefer to ignore the severely autistic and feature repeated interviews on CBC TV and radio with their favorite autistic person, High Functioning Autistic, Michelle Dawson. If need be they will go to the US and speak with persons with Aspergers Disorder like Ari Ne'eman Washington Insider and self appointed spokesperson for all persons with autism even though his diagnosis is actually Aspergers Disorder. But our delicate autism journalists at the CBC will not visit the institutions in Canada or the US where severely autistic persons live out their existence when parents die or can no longer care for them.

The bottom photo is the Restigouche Regional Hospital in Campbellton, New Brunswick and the top shows the Centracare facility in Saint John New Brunswick. I have visited both facilities and seen what life means for autistic persons in institutional care. If the CBC and its intrepid journalists need directions I would be happy to provide them. I will not hold my breath waiting for the CBC to realize that Michelle and Ari and Alex and Amanda and Estee do not present a full view of the autism spectrum. I will not wait anxiously for the CBC to seek direction to the facilities shown above.

I will ask anyone reading this blog though to remember the autistic persons living in institutional care. For them life is not Posautively Autistic.

autism

Read more »

Facing Autism in New Brunswick (and Conor) 3 Years Later

Conor, October 2007

Conor, August 2009 (2 days ago)

In a few days it will be three full years since I began this autism blog. Things have changed in 3 years and things have remained the same. I have changed ... some. And Conor has changed ... a lot. The autism world for the most part has not changed at all with the same arguments being recycled over and over. The good news ... or bad ... if you are a faithful member of the Autism Hub ... is that I enjoy blogging and plan to continue.

I have written previously of my motivation for starting this blog and will not do so again other than to say that I wanted to express my views about autism a subject of utmost importance to me because my buddy, my son Conor, has Autism Disorder. Today and each day I pledge to continue to fight for a better life for him no matter what obstacles are placed in my path and no matter who places those obstacles there.

I do not accept the descriptions of autism offered up on major media publications like CBC and CNN which tend to ignore the harsher life challenges faced by the more severely affected. The CBC, in particular, caters to the views of Michelle Dawson and some other High Functioning Autistic Persons and persons with Aspergers Disorder who do not want to be cured of their autism and therefore feel that no person with autism disorder could really want to be cured. I reject wholeheartedly such attempts to impose their personal feelings on my son.

Three years ago my immediate interest was the impending election in New Brunswick. For parents of children with autism the Liberal Party of then opposition leader Shawn Graham offered a real choice. In the election campaign Mr. Graham made very specific promises:

1. Integrate services for young children and their families by enhancing and expanding the Early Childhood Initiatives Program to ensure a smooth transition into public school for children identified as at risk or those with special needs, such as autism.

2. Provide UNB-CEL autism training for 100 additional teaching assistants and Methods and Resource teachers each year for four years.

There was some fierce resistance from the education bureaucracy because the commitments arose out of consultations with stakeholders and civil servants could not claim career ownership of the commitments. The CUPE local union representing Teacher Asistants has also opposed the commitment because not all of their members could pass the entrance and graduation requirements for the UNB-CEL Autism Intervention Training program. But, Premier Graham has been honoring those commitments, together with former Education Minister Kelly Lamrock, in the three years since that promise was made.

Federally not much has happened to help autistic children in Canada over the past 3 years. Our Fredericton MP together with Nova Scotia MP Peter Stoffer was able to get a motion passed which essentially recognized the need for a National Autism Strategy for Canada but it did not do much more than that. The much more concrete private members bill from PEI MP Shawn Murphy was defeated by a coalition of the Harper Conservatives and the Bloc Quebecois. It is clear that as long as Stephen Harper, who has never been a big fan of Canada's public health care system, remains Prime Minister there will be no REAL National Autism Strategy which addresses the funding requirements of the provinces struggling to provide autism services across Canada. Only the parties responsible for our national medicare system, the Liberals and NDP, will consider a REAL National Autism Strategy and parents of autistic children would be well advised to elect either one or both to govern if they hope to see a REAL National Autism Strategy put in place to ensure interventions, education and residential care for all of Canada's autisic children and adults in need.

Canada has some very prominent autism researchers but they tend to be old guard researchers like Eric Fombonne and Laurent Mottron; interested in pursuing their pet theories about the nature of autism but doing little to actually advance our knowledge of causes and cures for autism. (In fact Mottron has stated that the notion of curing autism is nonsense). The United States, which has led the way in providing credible, evidence based assessments of autism interventions, also leads in seeking to find causes and cures for autism (Once again, this Canadian autism Dad says God Bless America).

The "it's gotta be genetic" paradigm that Teresa Binstock described in 1999 as the basis for funding decisions for autism research still dominates the studies that are being done and the discussion of autism issues but it is beginning to change with an emerging consensus that autism disorders result from an interaction of genetic, environmental and biological factors. As the authors of the recent California study pointed out though autism research funding still grossly favors genetic over environmental autism research. But at least it is starting to dawn on some at the IACC that they have to start looking at environmental factors.

On the controversial issues of vaccines and autism I have changed my mind. While I once accepted without questioning the public health authorities position that there is no vaccine autism connection I am no longer so sure. I have read the comments of people like Dr. Bernadine Healy and Dr. Jon Poling and I am no longer convinced that the science is closed on these issues. As the public health authorities commence a campaign to provide as yet untested Swine Flu vaccines to pregnant women and young children, vaccines containing both thimerosal AND adjuvants that enhance the effects of the thimerosal, I am very mindful of Dr. Healy's caution that the mercury based thimerosal crosses the placenta. I can't help but wonder whether the 2009 Swine Flu panic will give rise to an Autism Baby Boom, yet another dramatic increase in autism diagnoses, in the year 2011 and subsequent.

I have enjoyed, for the most part, the people that I have met over the internet by blogging. I am not the easiest person in the world to agree with on a good day and with autism there is always room for intense disagreement on most issues. But I have come to "know" many people that I believe I like even though I disagree with them on many issues. Of course there are others who do not fall into that category but I will say nothing about them.

For me personally the biggest change in the last 3 years has been with my buddy Conor. He has grown like a weed, now standing 5' 11" and counting, at the age of 13. Every day living with Conor brings challenges. His severe Autistic Disorder is no picnic in the park. But every day without exception has also been a tremendous joy.

Where I part company from those autism parent bloggers who espouse the joy of autism philosophy is that while I love my son dearly, and enjoy my time with him each day, I refuse to sweep the negative realities of his Autistic Disorder under the carpet. I refuse to praise what is at bottom a neurological disorder that restricts his life opportunities. I refuse to do my son that disservice. I love him far too much to do that.

Thank you to everyone who has taken the time to read this blog from time to time even those who disagree with me. I intend to keep on blogging and I hope you visit again.

Conor's Dad

autism

Read more »

Autism Jabberwocky Puzzled by Michelle Dawson's Obsession With Trash Talking ABA

Autism Jabberwocky (MJ) expresses his puzzlement with Michelle Dawson's opposition to ABA as an intervention for autistic children in Michelle Dawson. MJ notes the overwhelming evidence against Ms Dawson's anti-ABA position, the lack of a clear basis for her ethical concerns, and the lack of any reported life experience with ABA that would explain her views and actions in opposing ABA.

MJ also notes the fact that Michelle Dawson "has a bad habit of discouraging parents from using ABA to help their children". As anyone who reads this blog knows I share MJ's concerns about Michelle Dawson's ABA (anti0ABA) views, particularly when parents of newly diagnosed autistic children are discouraged from seeking ABA help for their children.

autism

Read more »

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

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 roll 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

Read more »

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.

autism

Read more »

The 85% Problem: Autism Disorders and DNA Damaged Sperm In Our Chemical Society

Are autism disorders, and other neurological developmental disorders, caused by DNA damaged sperm?

Concerned heart is a blogger who authors several blogs dealing with paternal age and dramatic increases in a number of disorders including autism, ADHD and schizophrenia. She posts many articles linking paternal age with declining sperm quality and increased rates of disorders including autism, ADHD and schizophrenia.

The CBC documentary The Disappearing Male reports the impact on males of our chemical based society including declining sperm quality. On the accompanying CBC web site page Factsheet: Male Infertility are some of the startling facts from that documentary:

• The average sperm count of a North American college student today is less than half of what it was 50 years ago.
• The quality of sperm is declining. Eighty-five per cent of the sperm produced by a healthy male is DNA-damaged.
• The chemical industry has developed more than 90,000 man-made chemicals in the last sixty years. Eighty-five percent of them have never undergone testing for their impact on the human body.
  

85%? If autism is related to declining sperm quality as suggested by dramatically higher rates of autism amongst children of fathers over 35 at the time of conception and if 85% of sperm is damaged, even amongst college age males, from chemical exposures, is it any wonder that we are seeing increases in autism, adhd, learning disabilities, Tourett's syndrome, cerebral palsy and dyslexia as reported by the CBC?

With 85% of sperm being DNA damaged is the human species already damaged beyond repair?

If we allow the conditions that result in such incredibly high rates of DNA damaged sperm to continue unchecked will humanity as we know it continue to exist?

Autistic children are not just "natural variations". They may quite literally be the canaries in the coal mine of our chemical society.

autism

Read more »

Salon's Elizabeth Svoboda Provides Balanced Picture of Autism and Neurodiversity

I was interviewed by Elizabeth Svoboda for her Salon.com feature on Neurodiversity "I am not a puzzle" and I am impressed by the balance shown in the article for which that interview was conducted.

I have complained in the past that Neurodiversity gets a free ride from the mainstream media (especially Canada's publicly funded CBC) and is permitted to misrepresent the nature of autism. Few in the media even question the right of some persons with Aspergers or High Functioning Autism to speak on the behalf of all autistic persons including lower functioning persons with Autistic Disorder, like my son, with whom they have very, very little in common.

In addition to presenting different perspectives Ms Svoboda's interview allowed some Neurodiversity leaders like Ari Ne'eman, the ASAN leader with Aspergers Disorder, to go on the public record with their distorted representations of Applied Behavior Analysis, the empirically backed autism intervention that has helped so many children with autism disorders and serious deficits to acquire skills and reduce dangerous self injurious behaviors. As his quotes in the Salon article show, Ari Ne'eman relies on outdated caricatures of ABA, arguing erroneously and with nothing to back it up, that ABA, as practiced today, still relies largely on aversives.

I thank Ms Svoboda and Salon.com for practicing real journalism. Unlike the CBC, which routinely promotes Neurodiversity on its English and French radio and television programs, En jeux, Quirks and Quarks and prime time news features like "Positively Autistic", Salon. com has offered a balanced, professional view of this misguided ideology and some of its leaders.

autism

Read more »