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

Abstract

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.

HealthImaging.com 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 HealthImaging.com 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.

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.

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".

 

 

  

 

 

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.

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?

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.

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

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.

Conor's Apple Picking Education

Conor receives instruction, including ABA based instruction, at Leo Hayes High School, a neighborhood school. He interacts with other students in the Resource Center and in common areas of the school. He also gets to go on school outings to places like the pool at his former middle school and recently went apple picking with other students and with a Teacher Assistant who was kind enough to take, and forward,  some excellent pictures. And, oh yeah, Conor loves apples. We go through a lot of them at home.

 

New Alward Carr Government Will Roll Back Autism Progress in New Brunswick

Congratulations to New Brunswick's new Premier David Alward and all members of his team who were elected.  Congratulations also to those Liberals who were elected despite the obvious backlash against the Liberal government of Shawn Graham. I offer all these congratulations sincerely even though I know that the election of this government and the likely cabinet role to be played by Jody Carr and possibly his brother Jack Carr will spell the end of the progress that has been made in helping autistic preschoolers and students in New Brunswick over the past 4 years.  We live in a democracy and the people have spoken. Those elected, including the Carr brothers in their ridings, have received the endorsement of the people.  For this they deserve the hearty applause of all NBers including me.

Having offered these sincere congratulations  though I must also state that the Carr Family will exercise a profoundly  negative influence on the future of autistic preschoolers and students in New Brunswick. Their prominence will threaten existing programs of early autism intervention, autism trained Teacher Assistants and accommodation in alternative learning environments within neighborhood schools for autistic children and other children whose severe disability challenges make the mainstream classroom a negative, and in some cases, a harmful environment.  I know these things because I was actively involved, along with other well informed, determined parents of autistic children,  in the struggle to establish the preschool and school programs and policies that have made New Brunswick an autism leader in early intervention and education in Canada.  I know these things because throughout the years of struggle we were steadfastly opposed by the New Brunswick Association for Community Living to which both Jody and Jack Carr are intimately tied.

The NBACL has done much good in raising public awareness about disabilities generally, promoting acceptance of disabilities generally, and acceptance. The problem is that the "community" and "inclusion" principles of the Community Living organizations in Canada and in New Brunswick have hardened into resistance to accommodation of those with severe autism challenges and other individuals whose disabilities require accommodation and learning in different environments ... a separate quieter environment outside the mainstream classroom ... than that which NBACL and CACL insist upon for ALL students regardless of their specific disability and their specific challenges and needs. The fine principles of the NBACL have deteriorated into dogma and ideology and Jody Carr, his wife Krista Carr and Jack Carr have all , in the past, resisted  efforts of parents seeking to help their autistic children.  The Carr's have resisted evidence based approaches to early intervention and education of all children with disabilities, including autistic children, in favor of cliches. There is no room for compromise or accommodation in the Community Living based ideology which the Carrs  promote. For them It is the community cliche way or the highway.

Adult autism residential care is one of the areas in which little progress has been made in New Brunswick.  5 years ago the Bernard Lord Conservative government sent an autistic youth to the Miramichi Youth corrections facility for several months while he waited a place at the Spurwink residential treatment facility in Maine.    When Jody Carr vetoes efforts to create a professional, evidence based and compassionate residential care and treatment facility in New Brunswick he says that "we will not send them away" do not be fooled, do not believe him.   In 2005 the Lord  Conservative government sent them, autistic youths and adults,  away to Maine and to outmoded psychiatric facilities, even to hospital wards and Jody Carr, a Conservative MLA at the time,   said nothing .... absolutely nothing.  

For New Brunswick children and adults with autism the Alward Carr years will not be pretty. There is a rough trail ahead, a very rough trail.

.

The Future of NBers with Autism Will Be Decided Here; Please Vote FOR Autism

Today New Brunswickers will vote.  

We will come together and decide who will represent us in the  legislature.  This is the most important decision we, citizens in this province, will make for the next 4 years.  

If news reports are true many will vote in anger or cynicism or out of a desire to punish the governing party. That is their democratic right. That is your democratic right. I ask you though, as the father of an autistic son, to not let anger determine the future of your family member with autism. Please vote FOR our autistic loved ones, family members and family friends with autism.  Please do not vote in anger or cynicism. Vote for the party that, over the past 4 years,  made New Brunswick a leader in preschool and school autism services in Canada.  

Please do not vote for a party attempting to capitalize on anger. Do not vote for a party which will give New Brunswickers cliches like "community", "inclusion", and "connecting the dots" but will dismantle the evidence based programs that have been built and helped our children.  Do not vote for a party which will dismantle New Brunswick's Canada leading evidence based early intervention and education system.  Please do not vote for anger and the Conservative Party.  Please vote Liberal ... for the continuation of solid autism programs that have benefited our children.

Autism Promise 2006: Liberals Kept Their Word and New Brunswick Became a Leader in Educating Children with Autism

If you are the parent, family member, or family friend of a child with autism who is being educated  or assisted at a neighborhood school by an autism trained Teacher Assistant and autism trained Resource Teacher, as I am, please remember that these services resulted from an extraordinary promise made ... and kept .... by  Liberal leader Shawn Graham who kept that commitment as Premier once his Liberal party formed the government. My son Conor, and many other autistic school children in New Brunswick,  received the benefits of that promise and the UNB-CEL autism trained Teacher Assistant instruction and individual instruction program put together with the help of autism trained Resource Teachers. 

Tomorrow as you cast your ballots please remember the following autism commitment  made to then Autism Society NB President Lila Barry on behalf of autistic children and their families. The commitment was made,  and honored, by  Shawn Graham and his Liberal government. The fulfillment of that commitment has helped many autistic children in New Brunswick, including my son Conor.  The fulfillment of that autism commitment has made New Brunswick a leader in educating children with autism :

From: Graham, Shawn (LEG)
Sent: Wednesday, September 06, 2006 2:37 PM
To: lila barry
Subject: Liberal Platform

Dear Ms. Barry:

Thank you for your letter and for sharing your concerns with me. In our Liberal election platform that will be released this week, we are committing to the implementation of the recommendations of the Interdepartmental Committee on Autism released in November 2001. Although we realize this document is now nearly five years old, it does provide a basis on which to develop, in partnership with the stakeholders, a strategy that will assist children with autism from early childhood and into adulthood.

As well, we will take two concrete steps to address the immediate needs of children with autism in two areas: a case management process and UNB-CEL autism training.

A new Liberal government will:

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.

I commend you and the members of the Autism Society of New Brunswick on your tireless advocacy on behalf of children with autism. You are truly making a difference in many lives. Please feel free to contact me at any time.

Yours truly,

Shawn Graham

Autism in New Brunswick Under Conservatives? I Am Worried, Very Worried

I am very worried that the gains made for autistic children and students and work done towards a modern, decent residential care and treatment system for autistic youths and adults will be lost if the Conservatives are elected.  

On his facebook page Jody Carr, who will have a prominent role on disability issues if the Conservatives are elected,  has made it very clear that the Conservative era of community cliches will replace evidence based, reality based, services and accommodations for autistic children, youth and adults.  

Even worse Mr. Carr had the gall and audacity to dismiss the recommendations of autism expert Dr. Paul McDonell for  a rational, professional, adequate autism residential care system with the political sound bite that his party would not "send them away".  Mr. Carr's memory seems to have failed him.  He was a Conservative MLA during the last term of the Bernard Lord government when  autistic youths and adults were sent away to Centracare even to hospital wards.   It was that same Conservative party, of which Mr. Carr, and Mr. Alward, were members that formed the government when an autistic youth was sent to live on the grounds of the Miramichi Youth correctional facility. The youth had not committed a crime. He had not even been charged with or suspected of having committed a crime.  He was autistic and had very serious challenges and there was nowhere in Mr Carr's community for him.  He was housed in a youth jail facility while awaiting export to decent residential care and treatment out of the country in Maine. 

Jody Carr did not speak out against the jail grounds placement, inadequacy of the autism residential care system or the need to export an autistic youth as I did;  as reported in this 2005  Toronto Star article:

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital 

No other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA
BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't." 

 Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution." Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him. "This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department. "He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents. This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day. Johnson said she does not know any details of his care. 

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada. He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder. "If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder. "We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people. "We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case." The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents. A Spurwink representative did not return a phone call from the Toronto Star. Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province

Jody Carr was a Conservative MLA at the time of the Toronto Star article and events described  therein. He is not mentioned or quoted in the article speaking about the youth's plight.  He did not at that time state that a Conservative government should not "send them away".  Jody Carr  was silent and did nothing to denounce decisions to send youths to prison facilities and to facilities out of the country when he sat as an MLA for the governing Conservatives. Now he had the nerve to dismiss the recommendations of an autism expert who has been intensely involved in helping autistic persons in NB and shaping the autism policies that have made NB a Canadian leader in providing preschool and school services for autistic children and youths with the political hack statement that his party would not send autistic adults away.  Jody Carr is contradicted by his past record when he said nothing while his party did indeed send them away.

If you care about an autistic child, brother, sister, grandchild or other  family member or friend please do not vote Conservative on Monday.