Sunday, October 31, 2010

Low Functioning Autism Reality and Autism Posers at New York Magazine

New York Magazine Says Aspergians and High Functioning Autistics, like 
Ari and Alex Shown Posing for their NY Magazine Coronations,   who Socialize
with Washington Pols and NY Media, Drive Land Rovers, Produce  Videos
with Autism Speaks; and Argue with Experts at IACC  Meetings 
Represent, and Speak for, People with Autism

Many parents and siblings of persons with low functioning autism might  disagree


I received the following email from Wanda James in the Upper Ottawa Valley and post  it with her consent. It is important for those who have children and siblings who are severely affected by autism disorder to speak out and be heard.



I'm so glad to have found you if only because I've been searching the web endlessly and just about ready to pull my hair out reading about all these high-functioning socially inhibited "disabled" people. It was a relief to find someone who understands the true nature of autism and what it entails.

I'm desperately trying to find some info for my mother who is caring for my severely autistic 39 year-old sister. My parents are elderly now and have no idea what will happen to Jennifer when they go. No one in the immediate family can take her-- she is very hard to handle- very self-destructive and obsessive to the point of violence if the ritual is disrupted.  I've been searching for anything to give them hope that there is something out there but I can't find anything except a lot of people who are rejecting help because they don't want autism to be seen as a disadvantage. Makes me so mad. I joined a forum just to "let them have it" but I guess I ran out of steam.  I've got to choose my battles carefully these days. My parents are a bit isolated on a farm in the upper Ottawa Valley in Eastern Ontario so there's not much of a network there. I just wanted to be able to give them some hope that there are programs out there. Except there aren't any. Autism Ontario and the Autistic Society seem to be lobbying the government for lower priority things, like camps for kids, publications, workshops, theatre groups, raising awareness etc.-- and nothing for actual bricks and mortar housing or the staff to put in them. They closed down the only place we had here in Ontario for severely disabled people because they deemed it too "institutional" and not efficient. They then went on to open some prototype group homes which all failed because the people living in them weren't as independent as the government assumed they'd be. Why are governments usually made up of idealistic morons? Don't get me started! : )

I'd like to know how you are doing with getting the message through to governments, etc. I would be lobbying on the Hill if I could, but I'm disabled myself with pretty severe rheumatoid arthritis. I share the sense of fear my parents have and there don't seem to be any answers. Meanwhile, autism has become a trendy thing to have-- and suddenly everybody has it if they so much as stare into space for 5 seconds. I could not believe some of the forums. One woman said she was okay in social situations, but nervous in interviews! Well, duh. Who isn't? But the danger here is the "watering down" of the impact of autism on a person's (and) family's) life. It clogs up the system, driving the numbers up which governments take into account when they are doling out assistance. In the end, the people who really need the help, don't get it. It's much the same with arthritis. Everybody I meet has it-- in a thumb, wrist, whatever. They take a Tylenol and they're fine. But I will be having chemo next month to help eradicate mine. I've got 3 artificial joints and tendon repairs. I've been on some pretty life-threatening medications. But it's hard to be taken seriously, because "hey, my aunt has arthritis, and she can still work". That's why I wrote the book Getting Up is Hard to Do: Life with Rheumatoid Arthritis- to try to get the message out there. Now I've got to fight for my sister. I don't know how to deal with this.

Hope you don't mind me writing.

Take care

Wanda James


If you have read this blog on occasion you will know that I try to being attention to those who are typically ignored by the mainstream media that fawns over such "autistic" persons as Ari Ne'eman, John Elder Robison, Alex Plank and Amanda Baggs ... all people of considerable intellect and high functioning abilities,  people whose "autism" has little if anything in common with my  severely autistic son diagnosed with autistic disorder by three pediatricians with autism expertise and assessed by an autism specialized clinical psychologist and professor emeritus.  Those for whom autism is a "social" disorder, a different way of thinking or a "culture" do not face the autism reality faced by my son.

Occasionally I hear from parents or other persons with a loved one with  low functioning autism who face challenges similar to my son.  Like me they are all too aware of the periodic Big Media (CNN, CBC, NYT, Newsweek, New York Magazine etc)  anointment of "new" voices of "autism", of new "leaders" of autism.  Where did Ari Ne'eman come from before the New York Magazine elected him as the "autism self advocate" par excellence? How did IACC, Interagency Autism Co-ordinating Committee, member Ne'eman, diagnosed as a teen with Aspergers, a university student with the social skills to hob nob with US federal and state politicians and make innumerable media appearances, acquire the knowledge and understanding of severe autistic disorders to be able to speak on behalf of people like my son?

Various autism advocacy organizations, including Autism Speaks, have accepted these high functioning, barely autistic, persons as spokespersons for all on the autism spectrum and virtually ignore the realities of those most severely affected by autism. As with media and advocacy groups so too with governments which tend to ignore the most severely affected by autism, the low functioning autistic persons who live out their lives in restricted, archaic mental institutions instead of creating  positive, modernized, secure residential facilities staffed with autism trained personnel and access to badly needed professional. For many governments John Elder Robinson, former rock band musician, successful businessman, author and family man is the face of autism not Bryan Nevins who was left to  swelter to death, unable to remove himself from a hot van in Pennsylvania.  For many governments the face of autism is a high functioning, intelligent and articulate media star not the 50 year old autistic woman who could not speak or convey emotions or pain and who was repeatedly battered and beaten by employees at the PLUS Group Home Inc. residential care facility in Long Island. 

Other parents, and members of families with severely autistic loved ones, know the difference. They know that their children are ignored by media, "autism" advocacy groups, governments, even by the American Psychiatric Association which reduced the percentage of persons with autism AND intellectual disability by expanding the definition of autism disorders in the DSM-IV to include high functioning persons with no intellectual disability.  Meanwhile, the APA is continuing its efforts to ignore and exclude those with low functioning autism disorders by further expanding, and diluting,  the definition of autism in the DSM-5.

 The New York magazine is unlikely to visit  any time soon some of the institutions  and facilities like those I have visited or the one in Long Island where a 50 year old autistic woman was abused or the one in Pennsylvania where a young severely autistic man died a horrific death in a searing hot van.  In all fairness though it could be difficult to get some of autistic residents in those facilities to pose  elegantly for some "glam" shots for the New York Magazine.

Those of us with children, siblings and loved ones  severely affected by Autism disorders must continue the fight to better their lives in the face of media, advocacy group and government indifference. 
We have no choice.  Our severely autistic loved ones have no alternative.

Friday, October 29, 2010

Manslaughter Charged in Hot Van Death of 20 Year Old Man with Severe Autism

Stacey Strauss of Philadelphia has been charged with manslaughter in the death of  Bryan Nevins, a 20 year old man with severe autism, who was allegedly left  in her care the day he was left to die in a sweltering hot van.  As reported by Jo Ciavaglia, Bucks County Courier Times, the court heard horrific testimony about  Nevin's death, including the fact that when  Bryan  Nevins was  pulled out of the locked van, hours after it had returned to the Woods Service facility,  his skin started slipping off his body. 

Ms Strauss has been charged, not convicted,  and if the matter proceeds to trial, she will do so with a presumption of innocence and with the burden on the state of proving her guilt beyond a reasonable doubt. The arguments at the preliminary hearing  indicate that her legal counsel will argue that Nevins' death was a horrific accident that resulted from a "system wide" failure and that the blame goes beyond his client.

A court in Pennsylvania will decide whether Stacey Strauss is guilty as charged and this Canadian lawyer will not presume to know what that court will decide. Legal issues aside though this father of a 14 year old boy with severe autism who knows that some day, some one, or some persons, will be responsible for caring for my son, hopes with all my heart that they  provide much, much, better care than Bryan Nevins received.

Thursday, October 28, 2010

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

Monday, October 25, 2010

What Autism Spectrum Disorder Severity Criteria Are Being Evaluated In The DSM-5 Clinical Field Trials?

Deborah Brauser, in an article on the Medscape Today website, advises that the APA has begun field trials for the DSM-5 diagnostic critieria including severity criteria which makes the APA's failure to disclose the proposed severity criteria curious, at least to this interested father of a 14 year old,  with an Autistic Disorder (DSM-IV) diagnosis and assessed with profound developmental delays:
October 19, 2010 — The American Psychiatric Association (APA) has announced that standardized field trials have now started in preparation for the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). .... Severity measures, through the use of questionnaires and other tools to help assess patient symptom severity on a rating scale, will also be examined during the field trials, as will "cross-cutting dimensional measures." These are tools for "assessing symptoms that occur across a wide range of diagnoses, such as anxiety or sleep problems." 
Severity criteria are being examined in the field trials which are already underway? If  so, if severity criteria for the New Autism Spectrum Disorder, Autistic Disorder in the DSM-5, are already established,  then why are they still not mentioned on the DSM-5 web site which tells interested persons to check back for updates on the subject?

Some disorders do have severity criteria posted on the DSM-5 web site:

Bipolar II Disorder
Personality Disorder Types
Attenuated Psychotic Symptoms Syndrome

Not all of the disorders, existing, newly proposed disorders or reclassified disorders have severity criteria published on the DSM-5 site. Presumably different work groups for the DSM-5 have reported in with their proposed criteria at different times but the fact that the severity criteria are being assessed in the field trials has to mean that each of the proposed disorders have in fact had the associated severity criteria established.  An article published in the American Journal of Psychiatry, Moving Toward DSM-5: The Field Trials,confirms that the clinical field trials will include evaluation of the related severity criteria for each disorder being studied, including autism:

"Formal field trials will involve the testing of between two and five specific diagnoses at any one site. The diagnoses tested at a site will depend on their relative frequency there. For example, major depressive disorder and complex somatic symptom disorder can be evaluated at a general medical clinic, but autism spectrum disorders require evaluation in a specialty psychiatric clinic specializing in these disorders.  ...... At each site, a research coordinator, trained and monitored centrally, will record each successive entry to the clinic over a specific time period to provide necessary sampling weights for that site's variance in reliability and validity. DSM-IV diagnoses obtained for clinical purposes at each site will be used to place each consenting patient into either a stratum likely to be rich in a target diagnosis at that clinic or a stratum consisting of a random sample of all other diagnoses. The goal is to recruit 50 patients per stratum per site, a total of 150 to 300 patients for each diagnosis under evaluation, to have adequate power for a site-specific determination of precision. Two DSM-5-trained clinicians who are new to the patient will be assigned to conduct independent clinical interviews of the same patient at least 4 hours, but not more than 2 weeks, apart. The attending clinician will be able to observe the interviews. The interviewing clinicians will know the target diagnoses at that site but will be blinded to the stratum to which each patient is assigned and to the attending clinician's diagnosis. The interviewing clinician at each session will be provided the patient's current crosscutting assessments, conduct a clinical interview with the patient, make one or more categorical diagnoses using DSM-5 criteria, and complete associated dimensional severity ratings.   [bold and underline emphases added]

The Autism Spectrum Disorder(s), including their severity criteria, are being evaluated at  clinical field trials now under way and yet the severity criteria are not posted despite entreaties by the DSM-5 to check back for updates under that category.  It would seem reasonable to speculate that their are reasons for this failure and that those reasons relate to the feedback received, much of it from persons who objected to Aspergers being grouped together with Autistic Disorder, with its high number of persons who are also Intellectually Disabled.

Any speculation about motives for the failure to disclose the autism spectrum disorder severity criteria is exactly that .... speculation. Unfortunately the APA has provided no  real information for the public to consider as clinical field trials are underway which could impact the lives of many persons with Autism Disorders, including the 75-80% who have  allegedly "co-morbid" intellectual disabilities.  The public, in the midst of such an important process, a process trumpeted wide and far for its transparency and public participation,  is simply left to speculate.

Friday, October 22, 2010

Saskatchewan, Canada's Autism Wasteland, Is Exhibit 1 in the Case for a National Autism Strategy

More than three years after I described Saskatchewan as Canada's Autism Wasteland the label still accurately describes the state of autism services in the prairie province according to a FEAT opinion article in the Star-Phoenix

The Families for Effective Autism Treatment article argues that some money has been spent but it has been spent ineffectively and cautions anyone with an autistic child not to move to the "Land of the Living Skies" as Saskatchewan markets itself:

It sounds impressive when you hear about all the money being put into autism and programs the government is running, but ask families across Saskatchewan about how well this money is being spent. Ask our government for current and regular report cards. Ask what successes it has accomplished with these new programs and positions. Ask it to provide statistics on how many individuals receive adequate and professionally trained support.

Ultimately, individuals with autism continue to lose.


Our children do not have time to waste while valuable dollars are spent creating expensive, ineffective services that aren't based on evidence and research. Our children need the help of proven therapies before they become another sad statistic lost in Autism's Wasteland.

Let your voice be heard for those who cannot. Saskatchewan can't afford to keep spending millions of dollars for ineffective programs that do not help individuals with autism. Let's use the money wisely and try not to re-create the wheel.

SASKFEAT is demanding immediate individualized funding, which is not income tested, until an acceptable and proven autism strategy is in place in Saskatchewan -- a strategy that addresses the lifetime needs of all individuals with ASD, and that is delivered across this province. Our families have been waiting and suffering long enough.

3 years after Saskatchewan started to fund autism services they still do not have an effective autism strategy in place. It is the autistic children of Saskatchewan who lost their 3 years of development potential, particularly during their early years between 2 and 5, who will have lost the most and who will pay the price for government and bureaucratic nonchalance or incompetence. 

Saskatchewan, Canada's Autism Wasteland, is also Exhibit 1 in the case for a National Autism Strategy.

Monday, October 18, 2010

Autism Services in New Brunswick 2010 Update

I would like to thank Fredericton's Daily Gleaner for publishing my letter to the editor concerning the state of autism services in Canada, and more specifically in New Brunswick, in October 2010.

Many do not know that Autism Awareness Month is recognized in October in Canada not April as in the US.

I have been blogging about autism issues for four years and it is easy enough to publish my own comments on this humble blog. It is a big boost though when the assistance, and reach, of a long established local paper is provided.

As stated in the Daily Gleaner today:

Adults with autism need help

Re: Autism

October is Autism Awareness Month in Canada.

Autism is a disorder which is diagnosed based on communication, social and behavioral challenges.

Approximately 75-80 per cent of persons with the most severe form of autism, Autistic Disorder, also have intellectual disabilities.

When my son was diagnosed with Autistic Disorder 12 years ago, the Center for Disease Control in the U.S. estimated that 1 in 500 persons had an autism disorder. Today that CDC estimate has risen to 1 in 110.

Many autistic children and adults can't function on a level which would permit them to live independent lives.

Despite these realities, our federal government has done nothing to deal with Canada's growing autism crisis, preferring to leave autism as a provincial responsibility.

Across Canada provincial governments have provided varying levels of responses. Fortunately for my son, New Brunswick has actually been a leader in developing early intervention and school services for autistic children.

The government-funded early intervention services, provided by competent trained staff at the autism intervention centres, makes New Brunswick a leader in that area.

The UNB-CEL Autism Intervention Training Program, which has received high marks by the most expert professionals on external review, has provided training to staff at the early intervention centres and to approximately 500 teacher assistants and resource teachers in New Brunswick schools.

Severely challenged autistic children like my son are able to receive instruction in quieter environments within neighborhood schools, while visiting common areas of the schools like gyms, pools and kitchens for socializing purposes.

As a long time advocate for these evidence-based services for autistic children I thank former premiers Bernard Lord and Shawn Graham for their rich contributions to New Brunswick's autistic preschoolers and students.
And I thank the many parents who fought so hard to draw attention to the need for these services.

I also thank professionals who have led the way like Dr. Paul McDonnell, Dr. Annie Murphy, Dr. Tara Kennedy, all the directors and staff of the autism intervention centers and Ann Higgins of the UNB-CEL Autism Intervention Training Program.

We have all failed, however, to improve the living conditions of autistic youth and adults, some of whom live in desperate conditions on hospital wards, with over-challenged and increasingly elderly parents and in psychiatric hospitals.

Autistic adults, as Professor Emeritus Paul McDonnell has recently stated, are badly in need of a modernized residential care and treatment system. We must act now to help autistic adults in New Brunswick.

Harold L. Doherty

Sunday, October 17, 2010

Autism Speaks Walks the Plank

There was a time when I was an enthusiastic supporter of Autism Speaks. That time has passed. I apologize to anyone who might have been influenced by my earlier support to view Autism Speaks as a legitimate spokespersons for those severely affected by autism or the parents fighting to help their children who are truly and seriously affected by autism disorders.

AS has raised the profile of autism around the world, worked together with the state of Qatar to establish World Autism Awareness Day, and raised funding for autism research. When some of the research money went to notorious anti-cure "autism" researchers like Dr. Laurent Mottron I began to have serious doubts about Autism Speaks. It began to look like a bureaucracry shifting with the winds of political correctness as defined by a few major media organizations which seldom portrayed autism as functional disorder which restricts the lives of many with Autistic Disorder and  some with Aspergers Disorder. The bringing on board of successful businessman John Elder Robison as an "autism" self advocate was a serious alarm.  The final alarm though is the recent affiliation with Alex Plank, an allegedly "Aspergian" young man who is also very successful socially, and in the world of the internet, a young man whose web site, amongst other trashy commentary, praised the fact that Dr. Ivar Lovaas had died recently. 

Autism's Gadfly, Jonathan Mitchell, has written an excellent commentary, Mr. Robison Goes to Washington,  on the ill advised role of John Elder Robison as a science adviser for Autism Speaks, an organization which apparently no longer speaks for parents of children with autism, or for autistic persons like Jonathan Mitchell, who would like to see more research aimed at finding a cure for autism disorders.  In the following video, co-sponsored by Autism Speaks, Alex Plank, John Elder Robison's son and an allegedly "Aspergian" young lady mock various toys sold at an autism conference.   Whether the toys are of any therapeutic value, whether autistic children or any children, enjoy playing with them I don't know. What is offensive is the sight of these very capable young people, including Mr. Plank who makes reference to his Land Rover,  mocking the efforts of parents to help their children whether those efforts are ultimately successful or not. The video is set in front of bookshelves filled with books and obviously these are intelligent young people in the video even if their sense of humor is offensive as I in find it to be.  

The mocking humor displayed by Mr. Plank and young Mr. Robison is  mild stuff by the standards at Mr. Plank's Wrong Planet web site where the death of Dr. Lovaas was cheered and parents seeking cures are routinely mocked and derided by self professed Auties" and "Aspies".  Why these obviously intelligent people,  including John Elder Robison,  huddle together under the banners of what are, by definition, mental disorders defined in the DSM, is beyond me. 

What is clear is that Autism Speaks has abandoned any pretense of seeking to  speak for the families of seriously autistic children  and autistic adults who seek cures for their autism disorders.

Autism Speaks, and its integrity, have walked the Plank.

Friday, October 15, 2010

An Autism Update You Should Read

If you are looking for a thorough, balanced and informed autism update I recommend that you look at  Update on Autism Issues in Treatment and Comorbidity by By Bryna Siegel, PhD, Eva Ihle, MD, PhD, Elysa Marco, MD, and Robert L. Hendren, DO at UBM Medica Psychiatric Times, October 15, 2010. The authors cover a wide range of issues in the increasingly complex picture of autism disorders. Prevalence, diagnostic assessment and classification, co-morbidity and treatment issues are canvassed. With comment on such a wide range of often controversial topics there are bound to be some that you disagree with  (I found some comments questionable)  but I recommend this article as a good use of your time if you are interested in understanding what our  current view of autism looks like.

Autism and fMRI Study: Autism Research Distorted, Once Again, by Exclusion of Low Functioning Autism Subjects

Another fMRI imaging study of brain connectivity in subjects with autism is reported in the Oxford journal Cerebral Cortex, October 12 2010.  I have highlighted  the article, Decreased Interhemispheric Functional Connectivity in Autism, abstract description of the study's autism participants .... all persons with High Functioning Autism.  Once again, the study which puports to draw conclusions about "autism" presumably referring to all of the Pervasive Developmental, or Autism Spectrum Disorders, excludes those most severely affected by autism disorders:

Decreased Interhemispheric Functional Connectivity in Autism


The cortical underconnectivity theory asserts that reduced long-range functional connectivity might contribute to a neural mechanism for autism. We examined resting-state blood oxygen level–dependent interhemispheric correlation in 53 males with high-functioning autism and 39 typically developing males from late childhood through early adulthood. By constructing spatial maps of correlation between homologous voxels in each hemisphere, we found significantly reduced interhemispheric correlation specific to regions with functional relevance to autism: sensorimotor cortex, anterior insula, fusiform gyrus, superior temporal gyrus, and superior parietal lobule. Observed interhemispheric connectivity differences were better explained by diagnosis of autism than by potentially confounding neuropsychological metrics of language, IQ, or handedness. Although both corpus callosal volume and gray matter interhemispheric connectivity were significantly reduced in autism, no direct relationship was observed between them, suggesting that structural and functional metrics measure different aspects of interhemispheric connectivity. In the control but not the autism sample, there was decreasing interhemispheric correlation with subject age. Greater differences in interhemispheric correlation were seen for more lateral regions in the brain. These findings suggest that long-range connectivity abnormalities in autism are spatially heterogeneous and that transcallosal connectivity is decreased most in regions with functions associated with behavioral abnormalities in autism. Autism subjects continue to show developmental differences in interhemispheric connectivity into early adulthood. reports on the study in Study: fMRI reveals functional differences in autistic patients and included the study authors' qualifications on the limits of the study including the fact that the study, conclusions, despite the titles of the Cerebral Cortex report and article, could not be extended to Low Functioning Autistic patients.
The authors acknowledged that limiting their study to high-functioning young autistic males restricted their findings from being extended to females, younger children or lower-function ASD patients. Nevertheless, Anderson and colleagues emphasized that “Our finding adds to growing evidence that abnormalities of interhemispheric connectivity in autism are widespread but regionally specific and related to cognitive and neurological impairments commonly found in the disorder.”

The authors posited that their findings highlight MRI as a 
potential tool to assist physicians in diagnosing and treating autism.

In one breath the study authors acknowledge that the exclusion of low functioning autistic patients restricted their findings from being extended to those patients (or to other excluded groups, including females and younger children). In the next breath though, and in the title of their report and magazine articles the study findings are reported as being applicable to autism generally. 

This is not the first study to exclude low functioning or intellectually disabled autistic subjects from "autism" studies. Prominent autism researcher, and DSM-5 panelist,  Catherine Lord has identified the  tendency to exclude autistic subjects with severe to profound intellectual disabilities:

"However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities".

The lip service qualifying statement in this recent fMRI study report did not preclude the authors from making generalizations about autism as found across the spectrum notwithstanding the exclusion of low functioning autistic persons from the study. Articles commenting on this and other studies may or may not repeat that qualification.  Most certainly all will be accompanied by headlines reporting new "autism" findings.  Low functioning autistics are routinely excluded from major media institutions that like to focus on the barely affected, very high functioning persons with Aspergers or HFA, the Ari Ne'emans, Alex Planks, JohnMichelle Dawsons and Temple Grandins.  

As in the popular media, so too in "scholarly", "scientific" research. "Autism" just doesn't meant what it use to.

Alleged "autism" spectrum research is anything but representative of the autism "spectrum" disorders.

Wednesday, October 13, 2010

Autism in NB Schools and Gordon Porter's New Minister of Education

Gordon Porter                            Education Minister Jody Carr

Gordon Porter was one of the 5 men  who formed the David Alward transition team that advised New Brunswick's David Alward as he prepared his transition from Premier Designate to Premier. One of the key tasks they handled was to assist in drafting the 15 Conservative MLA's who would form the pared down Cabinet. It is no surprise that MLA Jody Carr was named to fill the post of Education Minister. Carr, his wife Krista Carr, and brother and fellow MLA Jack Carr, are all disciples of Gordon Porter's extreme inclusion philosophy. They have all resisted for several years, in conjunction with Gordon Porter and the NB Association for Community Living with which Mr. Porter and the Carrs are affiliated,  efforts by parents of some autistic children to have their children educated in neighborhood schools but outside of the mainstream classroom

Gordon Porter began introducing in NB his extreme model of inclusion, with its "all children in the regular, mainstream classroom", decades ago. His views on inclusive education do not appear to have changed, literally, since mankind walked on the moon. During the MacKay Review of NB's inclusive education system, and while Mr. Porter was chairperson of the NB Human Rights Commission,  he spoke to me, and another autism advocate, contemptuously and angrily, dismissing us as "you people". While in the position of NB Human Rights Chair Gordon Porter's HR officers drafted a position on accommodation in NB Schools ..  a position which supports Porter's "keep all children in the mainstream classroom" vision.  

Gordon Porter's philosophy resulted in Conor being placed in a mainstream classroom where he was overstimulated and overwhelmed by being forced to learn a different curriculum by a different method than the other students in the class. Conor came home every day with bite marks on his hands and wrists while in Gordon Porter's inclusive classroom setting. The  biting declined and ceased almost entirely once he was removed at our request to a quieter setting. The evidence did not support Conor's inclusion in a mainstream classroom and school and district officials respected that evidence and accommodated my son's disability. I am thankful that they did.  

Gordon Porter's extreme inclusion philosophy has lost ground in NB schools despite his stranglehold on positions of influence in education circles. The Ministerial Committee on Inclusive education, which began during the Lord government years, and continued during the Graham government of the past 4 years,  made a commitment to an evidence based approach to inclusive education based on the best interests of the individual child in its definition of  inclusive education. That evidence based approach permits children like my son Conor, diagnosed with Autistic Disorder and assessed profound developmental delays, to receive ABA based instruction in a separate, quieter area of the school,  while visiting common areas of the school such as the gym, pool, kitchen etc where they can also meet other children. 

Hopefully Education Minister Jody Carr will shake free of the dominating influence of Gordon Porter and not try to roll back the progress that has been made in New Brunswick schools  by so many autistic children, including my son Conor. I am told by some people whose opinions I value that I should give Minister Carr an opportunity to do the right thing by autistic children so I will but I will do so reluctantly, cautiously and with an  eye to ensuring that the Porter Philosophy of Inclusion does not force my son back into the mainstream classroom where his education, his health and his safety would be at risk.  Hopefully new Education Minister Jody Carr will not try to undo the commitment to evidence based education that is necessary for many children with disabilities and disorders, including some with Autism Spectrum Disorders, to receive a real education in New Brunswick schools.

Monday, October 11, 2010

Conor Loves To Travel, This Time to Nova Scotia in October!

This is the Thanksgiving long weekend in Canada and it is an excellent time to travel with fresh, cool air and lots of color in the trees.  We decided to visit family in Nova Scotia's Annapolis Valley where it is apple harvesting time.  We also enjoyed trips to local scenic sights including Blomidon and Hall's Harbour on the Bay of Fundy,  home of the world's highest tides. Conor loved every minute of it. He loves traveling in Dad's "silver car".




Saturday, October 09, 2010

Have Severity Criteria for the DSM-5's New Autism Spectrum Disorder Been Abandoned?

Have the severity criteria for Autistic Disorder, the New Autism Spectrum Disorder in the DSM-5, been dropped? 

The severity page for Autistic Disorder has encouraged readers for several months, at least since June 1 2010 when I looked, to check the DSM-5 web site regularly for updates. I checked today October 9 2010 and there are still no severity criteria recommendations posted for Autistic Disorder.  News releases are now being published for the sites selected for field trials.  
The rationale for creating one NASD includes  appears to acknowledge that the new spectrum should be described by reference to severity and even includes a separate page to address severity criteria:

Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”.

If the severity criteria are considered important aspects of the New Autism Spectrum Disorder why are clinical field trials being instituted before severity criteria are established?  The heaviest initial criticism of the new combined Autism Spectrum Disorder came largely from those with Aspergers or family members of those with Aspergers concerned about being lumped together with Autistic Disorder and the high numbers of persons with Autistic Disorder and the "associated" feature of Intellectual Disability. Any mention of Intellectual Disability in connection with the new combined diagnosis will undoubtedly invite more hostile reaction.  Yet it would be absurd,  if not intellectually dishonest, to describe Autism Spectrum Disorder by severity without including Intellectual Disability  as one of the severity criteria.

Despite the suggestion that interested persons check the severity page of the DSM-5 web page regularly for updates there have been none to date.   But the clinical field trials for the new Autism Spectrum Disorder are going ahead and sites for the trials are being selected and announced.Why go ahead for with field trials for a diagnosis which is not yet completed with respect to necessary severity criteria?

Frankly, I am doubtful that the new combined Autism Spectrum Disorder in the DSM-5 will include any  references to severity criteria or to "associated" features like intellectual disability; a feature "associated" with approximately 75-80% of persons with the current DSM-IV Autistic Disorder diagnosis. I am afraid that the severity criteria will be dropped out of fear of political correctness challenges from  those who do not want "autism" mentioned in the same breath as intellectual disability.

Wednesday, October 06, 2010

Genetics AND Environment: Autism Research Paradigm Shift in Canada Eh

As a Canadian father of an autistic son I have mixed feelings about our governmental responses to the autism disorders which affect 1 in 110 Canadians.  Our current federal government has shown more interest in destroying our national census system than in addressing the autism crisis that is creating increasingly larger demands on services at all levels across Canada.  In Prime Minister Stephen Harper's reality autism simply does not exist and need not be addressed by our federal government. Across Canada provinces have responded in varying degrees, with varying effort, quality and result in providing autism interventions and services.  On the research side Canadian autism research has been dominated by those who believe that the notion of curing autism is nonsense and those who believe as an article of faith, and contrary to evidence, that autism is 100% genetic in nature.  Accordingly, I was pleased to see an article in the Hospital News about autism research focusing more on genetic and environmental interaction being conducted by Dr. Dorota Crawford an assistant professor in the School of Kinesiology & Health Science at York University and other researchers who are part of the interdisciplinary Autism Alliance Research Group in York’s Faculty of Health:

She is using her unique dual expertise in genetics and neuroscience research to study how genes that have been associated with autism affect brain cell development, and how environmental factors – for example, drugs or infections – may cause molecular changes that interfere with communication between neuronal cells in the developing brain. She is confident that breakthroughs in earlier diagnosis and treatment of the disorder will come from a multidisciplinary approach. Crawford’s lab at York University is one of very few autism labs in the world that integrates genetics with molecular and cellular neuroscience approaches to study the link between biological and environmental causes of autism and behaviours. She is a faculty member of the Neuroscience Graduate Diploma Program and also part of the interdisciplinary Autism Alliance Research Group in York’s Faculty of Health. By working together, researchers in the Autism Alliance are seeking to understand the whole individual, working from the level of genes to cells to behaviour and the family. Their research ranges from basic science to clinical outcomes: from studying how social signals such as facial expressions are processed by our brains, for example, to trying to improve the language and communication skills of children with autism. Crawford’s current study, in collaboration with Children’s Treatment Network in Richmond Hill, aims to isolate causative genes to improve understanding of what goes wrong in brain development. The study will identify genes that predispose infants to autism by analyzing simple, non-invasive cheek swabs volunteered by children and adults who have been diagnosed with the disorder. Using the cheek swabs, Crawford will be able to measure gene expression levels in people with autism (gene expression is the chemical process of translating genetic codes in DNA into a protein). Her hypothesis is that an excess or insufficient expression of a gene may contribute to brain deficits and the symptoms of autism because early brain development depends largely on gene expression. Crawford will analyze the genetic material derived from cheek swabs using powerful new microarray technology that is able to detect more abnormalities than standard genetic tests. The technique used in the study will be useful for diagnosis of autism earlier in life, says Crawford, and will enable the development of more individualized intervention programs and identification of potential therapeutic targets. Her laboratory at York has produced a number of important results already, using a state-of the art microscope imaging system funded by the Canada Foundation for Innovation and Ontario Research Fund, and research investment from the Natural Sciences and Engineering Research Council of Canada. A recently-published study by Crawford and York graduate student Javaneh Tamiji showed for the first time how the drug misoprostol, that was misused by pregnant women in Brazil to terminate pregnancies, actually interferes with neuronal cell function. The study shows that the drug reduces the number and length of neuronal extensions, which might prevent the cells from communicating with each other. The drug is not used by pregnant women in Canada. However, the study also describes that other factors – for example, infections or inflammations – might have similar effects and interfere with development of brain cells in utero

It appears that in Canadian autism research circles the old guard is finally giving way to new researchers , new ideas and approaches and the new Autism Research Paradigm that views autism as the interaction of genetic and environmental factors. The US Senate recently heard evidence from a number of experts who talked about possible enviromental triggers involved with autism.  Leading autism researchers like Dr. Irva Hertz-Picciotto have identified the need to conduct more environmentally based autism research and to distribute autism research dollars more evenly.  Change is finally happening in autism research circles with the  insistence that autism is entirely genetic starting to fade. 

The Autism Research Paradigm Shift is happening. Even in Canada, eh?

Tuesday, October 05, 2010

Autism Outside the Mainstream Classroom in NB Schools - 2 Important Tools to Help Your Autistic Child

 If you are a parent of an autistic child in a New Brunswick school receiving ABA instruction outside the mainstream classroom, or  the parent of any autistic child who does not function well in the mainstream classroom (MSCR) environment, you will probably face increasing pressure to have your child educated in the MSCR as a result of the recent election of the  Conservative government.
Educators will be under increasing pressure, arising from the extreme inclusion philosophy, and influence, of  Cabinet Minister in Waiting Jody Carr and David Alward advisor Gordon Porter, to reduce the numbers of children receiving their learning outside the mainstream classroom.

If your child learns better in an environment outside the Mainstream Classroom you will have to be prepared to firmly, but politely, never losing your cool, and always remaining courteous, fight back against  pressures to place your child in the MSCR with Gordon Porter and Jody Carr directing, or heavily influencing,  education in NB .  There are two important tools available for you to use; A Framework for an Integrated Service Delivery System for Persons with Autism in New Brunswick from the Interdepartmental Committee on Services to Persons with Autism", November 2001 (The IDC Autism Report) and the Department of Education's Definition of Inclusion, October  2009. 

1. The IDC Autism Report, November 2001 -  Accepted Evidence Based Principle

Gordon Porter's vision of Full Mainstream Inclusion for all was born in NB  long ago and it's stranglehold on the best interests and education of our children has been weakened only by  strong , well informed, advocacy from parents with autistic children. Full inclusion is based on philospohy and belief but not on evidence and the key to resisting the full inclusion advocates who would take away the gains made by your autistic child is to fight back, fight back using evidence based arguments and the evidence based principle that was accepted by the New Brunswick government in the report "A Framework for an Integrated Service Delivery System for Persons with Autism in New Brunswick from the Interdepartmental Committee on Services to Persons with Autism" which was completed in November 2001.  In that report, in the Executive Summary, and in the treatment recommendations for  the Committee endorsed evidence based practices for the delivery of autism services in Health, Social Services and Education. In Numbered paragraph 4 of the recommendations the Committee stated:

4. That early competent intensive interventions based on empirical evidence of efficacy be available for pre-school children with autism.

2. Department of Education - Definition of Inclusive Education, October 2009 - Individual Needs Of The Child Should Guide Decisions Which Must Be Evidence Based

The focus on pre-school children with autism was expanded with the decision to train Teacher Assistants and Resource Teachers at the UNB-CEL Autism Intervention Training program. Some 500 such trained personnel are now working with NB students many providing ABA service which to date remains the only evidence based intervention for autistic pre-schoolers or students.  The quasi-government NBACL does not recognize the need for quieter areas outside the mainstream classroom will be necessary for some children with autism to learn properly, particularly those with ABA based instruction requirements. NBACL, with its insistence that all children be educated in the MSCR,  played a dominant role in the Ministerial Committee review of inclusive education practices  but despite that dominance the Committee accepted in its Definition  of Inclusive Education, 2009 that inclusive education and decisions to help children reach their full learning potential must be based on (i) the individual needs of the child and (ii) founded on evidence  in  its Definition of  Inclusive Education, 2009:

I. Vision

An evolving and systemic model of inclusive education where all children reach their full learning potential and decisions are based on the individual needs of the student and founded on evidence.

If your child with autism requires learning for all or part of the day  in an environment outside the mainstream classroom gather the evidence in support of your position carefully including medical diagnostic reports, assessment reports and recommendations from any professionals involved with your child.  Use that evidence to demonstrate your child's individual needs requirements.  Use the IDC Autism Report, 2001  and the Definition of Inclusive Education, 2009 to support your case.

Present your case calmly and courteously and be prepared in SEP meetings with your evidence and the above documents to help you. Good luck.

Sunday, October 03, 2010

This Autism Dad Says Thank You Shawn Graham

I had the privilege of meeting NB Liberal leader Shawn Graham several years ago when he was then the  Leader of the Official Opposition Liberals in the New Brunswick legislature. It was a cold Saturday morning in November. It was the second or third of several Saturday morning protests that parents advocating for autism services organized in front of the NB legislature.

I was standing on the steps addressing those present when Shawn Graham, whom I knew only from the media, came striding (Shawn Graham does not walk, he strides.) towards us from a government building adjacent to the legislature, came up and shook my hand. He stood for several minutes talking, asking questions and providing his assurance that he would do everything he could to help our cause, to help autistic children in New Brunswick. I was wearing a parka and several layers of clothing to fend off the bitter cold. Shawn Graham was wearing only a business suit like the one in the accompanying picture and he did not flinch or shiver while speaking to me and discussing autism meaningfully.  I never forgot the impression he left on me.  I am a bit skeptical by nature but this guy struck me as one smart, concerned and tough customer, a guy who would not tell me to my face something he did not mean.   

Throughout the next several years Shawn Graham kept his word, and then some, in helping us fight for a commitment to evidence based preschool and school services.  Shawn appeared at our events while in opposition and he made a commitment ... which he honored in full ... over the opposition of some powerful vested adult interests ... to provide autism training at the UNB-CEL Autism Intervention Training program to 400 Teacher Assistants and Resource Teachers.

New Brunswickers, including political science experts at the CBC,  judged him harshly in the last election campaign.  Anger fouled the political air in our fine province and the political science professors and political leaders alike played the anger card in shouting down the Premier. Competing political leaders is one thing but I don't recall seeing any of the political experts talk about the international recession that affected every country, state and province in the world in assessing the performance of Shawn Graham. Nor do I recall seeing or hearing the  political science experts look at the performance of the Liberal government from the perspective of the promises it  kept or its accomplishments. 

What I do know is that Shawn Graham made promises to help autistic children in New Brunswick. He kept his word and autistic preschoolers and students are the better for it.  This is one father of an autistic 14 year old attending high school here in New Brunswick who knows how much Shawn Graham has done for our autistic children and I say .... thank you Shawn Graham.

Thank you and one more thing please.  Please consider staying on as Leader of the Official Opposition. You have just taken a real good beating in the electoral arena.  But you are a young man of considerable political skill, of integrity, and now with considerable political experience both good and bad.   Although I studied political science and history before attending law school I am no political expert but I believe you are even more qualified now than before to lead the opposition Liberal party and to return to the office of Premier after all the angry voices turn on the current Premier-Elect and his party in the next provincial election.

Regardless of what choices you make Mr. Graham thank you for your contributions to the lives of so many autistic children in New Brunswick including my son Conor.

Harold L. Doherty
Conor's Dad

Friday, October 01, 2010

Alward Transition Team Member Gordon Porter's Policies Harmed & Discriminated Against NB Children With Autism

"You people should be thankful for what you have"

The preceding statement was made by David Alward transition team member  Gordon Porter an Order of Canada recipient, former chair of the NB Human Rights Commission and godfather of New Brunswick's extremist "everyone must be educated in  the mainstream classroom" model of inclusive education, speaking to Autism Society New Brunswick representatives Dawn Bowie, a registered nurse, and mother of a son with autism and me, Harold Doherty a lawyer and father of a son with autism during the Wayne MacKay inclusive education review several years ago.  Mr. Porter was visibly angry with me, and with autism rep Dawn Bowie during a session of the review where we tried to inform him, and others present, that parental experience and research did not support his vision that all children benefit from mainstream classroom inclusion as a place of instruction.  He was upset that we were questioning the  extreme inclusive education model that he introduced in New Brunswick schools decades earlier and he dismissed anything we had to say.  He was contemptuous of our experience, our knowledge and any contribution we had to make. He did not want to hear that his extreme everyone in the mainstream classroom model is not appropriate for all autistic children. Dr. Goron Porter dismissed our contributions with the words "you people should be thankful for what you have".

We tried to tell Gordon Porter, and others during the MacKay  review,  about different ways of learning and different methods of teaching autistic children than those employed in the mainstream classroom. We tried to tell him that autism is a spectrum disorder, that some children with autism will in fact thrive in the mainstream classroom, others can benefit from the mainstream classroom for parts of their day and that for others the mainstream classroom is not appropriate at all and can even cause harm.  Gordon Porter .... and  Jody Carr's wife Krista Carr  ... who was present during the review as  a disability representative did not want to hear what we had to  say.

I tried to tell Gordon Porter, Krista Carr, and other mainstream classroom extremists, about my son's experience with the mainstream classroom for his first year of school when he would come home every day with self inflicted bite marks on his hands and wrists, that the biting occurred as a result of Conor being ovewhelmed by the mainstream classroom environment by the instruction he did not understand. I tried to tell them that the biting was reduced dramatically, almost entirely, when Conor was removed to a separate so called segregated area of the school for his instruction joining other students in common areas when appropriate for  Conor

 Mr. Porter introduced in New Brunswick's education system  an extreme version of inclusive education which insists that ALL children must receive their education in the mainstream classroom with their chronological peers.  It is based on the philosophical belief that all children regardless of ability or disability benefit from placement in the mainstream classroom.  It is NOT an evidence based approach to educating children with autism disorders.  The Gordon Porter Everyone in the Mainstream Classroom model of inclusive education does not work pure and simple. It has nothing to do with the realities of a child's abilities or challenges.  It is simply the faith of one man, Gordon Porter, and his cult like following which includes Jody Carr, Krista Carrr and Jack Carr. 

Gordon Porter's extremist mainstream classroom vision of inclusive education does not recognize the specific challenges faced by some children with disabilities, including some children with autism disorders. When Gordon Porter began, decades ago,  imposing his vision on NB schools autism was not known to the world at large.  While autism was known by some researchers as far back as Kanner in 1943 and was mentioned in the DSM II it was not identified in the DSM, the Diagnostic and Statistical Manual used by psychiatrists in North America, until the DSM III in 1980 well after the Gordon Porter Era had begun in NB.   

Dr. Gordon Porter knows nothing at all about autism disorders or the various challenges faced by many autistic children in a school environment.  During the MacKay Inclusive education review he did not want to learn either.  He did not want me or Dawn Bowie to speak about autism because we were also pointing out that his sacred cow, his extremist vision of inclusive mainstream classroom education did not work for those who were in dire need of assistance. Dr. Gordon Porter who has received awards from around the world did not want to hear evidence from people, Dawn Bowie and Harold Doherty, who knew much better than he, that his vision has actually harmed some autistic children, some of whom are sent home after his model fails them. So the very distinguished Dr. Gordon Porter, like his disciples Krista Carr, Jody Carr and Jack Carr, simply dismissed us and told us that "you people" should be thankful for what you have.

David Alward's Conservative platform in the recent election campaign was written be a committee chaired by Gordon Porter disciple Jody Carr who will be named as a cabinet minister, probably in Education or Social Development, in the Alward government.  Mr. Alward's embrace of Gordon Porter and his extreme inclusion model of mainstream classroom inclusion for all is a very ominous but clear sign that dark days are ahead for the children with autism who have made made much progress recently in NB schools.

Following is a comment I wrote on this blog 3 years ago about Gordon Porter and the discriminatory aspects of his extremist, non-accommodating vision of inclusive education:  

Tuesday, October 16, 2007

New Brunswick Human Rights Commission Guidelines Discriminate Against Autistic Students

The New Brunswick Human Rights Commision has adopted new guidelines to accommodating students with a disability in New Brunswick schools - New Brunswick Human Rights Commission, Guideline on Accommodating Students with a Disability. Unfortunately for some New Brunswick students with Autism Disorder the guidelines themselves fail to accommodate their disability and in doing so discriminate against some students with profound Autism Disorder. The guidelines fail to accommodate by creating a "norm" or presumption in favor of mainstream classroom placement even though, for some autistic students, the mainstream classroom in not an appropriate place of learning, can be overwhelming to environmentally sensitive autistic children and can be result in dangerous, self injurious behavior.

When the NB Human Rights Commission says that mainstream classroom placement is the norm education officials will quite understandably feel that it is necessary to place all children in the classroom. Essentially this "norm" will push students into the classroom who should be in a different, quieter, less busy location within the school in order for them to learn, and to not be overwhelmed. For those school districts who do not want to spend the money from their budget to accommodate more individualized instruction necessary for some autistic students placing them in the classroom without individualized instruction by autism specific trained Teacher Aides will be a cheap solution, as it has been in the past. And the presumption or norm created by the HRC will assist them in justifying their decision.

New Brunswick schools have, over the past 30 years, been dominated by an extreme inclusion model which saw all children dumped in the mainstream classroom without proper support and without regard for the individual conditions of some children with disabilities such as some severely autistic children. The result has been disruption in the classroom, failure to learn by some children, and in some cases, including my profoundly autistic son, dangerously self injurious behavior. Fortunately, over the past several years, the rigid ideological approach of the classroom inclusion for all philosophy has given way in some instances to an evidence based approach which requires examination of what actually works for each child. Educate the child in the way he or she learns best, in the environment in which he or she learns best. An evidence based approach is consistent with human rights policies by requiring an examination of the disability issues presented by the individual student. This evidence based approach was promised by the Province of New Brunswick Inter-Departmental Committee that examined autism services in New Brunswick between 1999 and 2001.

The IDC Report issued in November 2001, disclosed the already known fact that there were at that time very few autism specific services available in New Brunswick. The most significant accomplishment of the IDC Report was that it recommended an evidence based approach to provision of autism services. The three departments that sat on the IDC were Health, Family Services and .... Education. In fact, since that time there have been some to an evidence based approach being adopted in some New Brunswick schools.

My own son, profoundly autistic, was removed from the mainstream classroom, at our request, after he repeatedly came home from school with self inflicted bite marks on his hands and wrists. He was overwhelmed by the classroom. To the full credit of school, district, and Department officials they looked at the evidence and agreed to place Conor in a separate room for his instruction for most of the day. The education officials accommodated my son's disability by looking at his actual condition and educating him in an environment suitable for him in light of the realities of his autism disorder.

During the MacKay Review of Inclusive Education Autism Society NB presented a position paper for educating autistic students which called for an evidence based approach. Teaching children how and where they learn best in light of their actual condition. As one of the autism representatives I spoke on numerous occasions about the need for an evidence based approach for autistic students. For some autistic students the mainstream classroom is the appropriate learning environment. For others, including my son, it is not. This evidence based approach is supported by research including Mesibov and Shea (1996):

The concept of full inclusion is that students with special needs can and should be educated in the same settings as their normally developing peers with appropriate support services, rather than being placed in special education classrooms or schools. According to advocates the benefits of full inclusion are increased expectations by teachers, behavioral modeling of normally developing peers, more learning, and greater selfesteem. Although the notion of full inclusion has appeal, especially for parents concerned about their children's rights, there is very little empirical evidence for this approach, especially as it relates to children with autism. This manuscript addresses the literature on full inclusion and its applicability for students with autism. Although the goals and values underlying full inclusion are laudable, neither the research literature nor thoughtful analysis of the nature of autism supports elimination of smaller, highly structured learning environments for some students with autism.

This information was present throughout the Mackay Inclusion review process. In one session I attempted, along with ASNB Education Rep Dawn Bowie, to speak specifically about autism issues and the need for an evidence based approach by which autistic students are educated in a location, whether it be in the mainstream classroom or elsewhere, according to the realities of their individual conditions. My comments were met dismissively by a New Maryland school official who asserted that we were not there to talk about autism. They were also met with angry opposition by New Brunswick Human Rights Commission Chair Gordon Porter who was present and who told me and Mrs. Bowie that "you people should be thankful for what you have ". Mr. Porter then proceeded to talk about how bad it was in the Special Education system in New Brunswick many years ago and how the inclusion model was a very substantial improvement.

Given Mr. Porter's prominent role in putting the inclusion model in place in New Brunswick, and given his strong personal views, it is not surprising that the Human Rights Commission which he chairs has issued Guidelines which create a presumption in favor of classroom inclusion for all students. It is also not surprising in that the New Brunswick Association for Community Living was tasked by the Department of Education with holding professional development days for New Brunswick teachers to explain the recommendations of the MacKay Inclusion Review. The NBACL is a fierce advocate for the total inclusion model. The NBACL has paid staff who persistently lobby for the full inclusion model. An example are the awards they hand out to teachers in New Brunswick who best demonstrate inclusion practices in New Brunswick schools. The NBACL, in hosting the inclusion professional development days for teachers asked Gordon Porter to be the keynote speaker at the event. A request by ASNB to speak at the event, to speak with the teachers about autism, and the need for an evidence based approach, was rejected by the NBACL.

Mr. Porter and NBACL are both strongly committed to the full inclusion model and that commitment to a philosophy of classroom inclusion for all is reflected in the norm espoused by the new Human Rights Commission guidelines. The promotion of that norm by the Human Rights Commission will put even more pressure on teachers and school officials to put all students in the classroom. The promotion of that norm is contrary to the evidence based approach promised for autistic persons in the IDC Report and it is contrary to the duty to accommodate the individual differences of students with disabilities, particularly some students with profound autism disorder.

It was precisely that failure to accommodate individuals with disabilities that led Yude Henteleff QC to describe the full inclusion model as discriminatory in a paper he presented to the Canadian Assocation for Community Living in 2004. Mr. Henteleff has represented individuals with a variety of different disabilities including autism, deaf and hard of hearing,
aspergers, Tourette's syndrome, attention deficit hyperactivity disorders, developmental
disability, physical disability and the learning disabled. He has been the legal counsel for the Association of Parents of Children with Autism in Manitoba and has been associated with the Learning Disabilities Association of Canada. In The Fully Inclusive Classroom Is Only One Of The Right Ways To Meet The Best Interests Of The Special Needs Child Mr. Henteleff argued that the full inclusion approach is in itself discriminatory by failing to accommodate individual disability based differences. At page 2 he states:

It should be abundantly clear, having in mind the foregoing statistics, that for children
who suffer from emotional, mental, behavioural, cognitive, sensory, physical, expressive
language, visual and auditory difficulties (and often a combination of some of the foregoing), it is simply not possible to meet their diverse needs in one environment. One shoe simply cannot fit all.

Indeed, total inclusion is a discriminatory concept because it limits the environmental choices, which groups of children and youth with differing difficulties have the right to make in their best interests.

I am completely dedicated to the public school system. I believe it is an integral part of
whom and what we are as Canadians living in a democratic society. That means a place where all children are welcomed - regardless of their gender, sexual orientation, ethnicity, colour, religion, physical or mental condition. In other words, the public school system is a place where the social contract guaranteed by the Charter and Human Rights Codes is fulfilled. That social contract is that every individual is entitled to equality and to be free from discrimination.

However, schools being a welcoming place regardless of gender, ethnicity, colour, religion, physical or mental condition, namely inclusivity, is far different from what is described as "full inclusion" in the general classroom. Full inclusion falls far short of guaranteeing equality.

Mr. Porter, the Commission, and the NBACL which all advocate for full inclusion will argue that establishing a norm does not mean that all children must be kept in the classroom at all times and that their disabilities are accommodated. Their argument fails to take into account the pressure this will put on parents and educators to place children in the classroom first and to ask questions later, contrary to an evidence based approach and contrary to an accommodation of the child's real needs. Some parents, will not have a professional background to rely upon when dealing with the education system. Many are talked down to by educators. When told that the classroom is the right option for their child they not be inclined, or able, to challenge that position. With the Human Rights Commission creating a presumptive norm in favor of the classroom inclusion option there will be no realistic choice for the parents to consider in deciding how, and where, their child, severely autistic or otherwise should be educated.

The full inclusion model limits choice as Mr. Henteleff points out. The persistent efforts by the NBACL and its inclusion lobbyists to promote the full inclusion model has in practice limited choice for some parents and their autistic children who might be better served in a quieter environment outside the mainstream classroom. Mr. Porter, who has been a significant part of that push for full inclusion, and who is now the Chair of the New Brunswick Human Rights Commission, has presided over Commission guidelines which will reinforce the presumption of full classroom inclusion - to the detriment of some autistic children.