Friday, June 29, 2012

Adults with Autism Disorders Not on the Political Agenda In Nova Scotia or New Brunswick

Conor at Black Rock on the Minas Basin, the eastern extremity of the Bay of Fundy, shared by New Brunswick and Nova Scotia, and home of the highest tides in the world.  NB and NS also share a lack of commitment to helping autistic, particularly severely autistic,  youth and adults.

Nova Scotia is receiving some recognition for improvement in services for children with autism disorders on the one hand but is also criticized for leaving adults and older children with autism behind.  The situation is not unique to Nova Scotia.  

New Brunswick made significant gains in provision of preschool and school services for autistic children during the Lord and Graham administrations although those services are now slipping away under the Alward-Carr-Porter administration. Autistic youth and adults, however, have not made any substantial gains at all during the Lord, Graham or Alward terms. No progress has been made in developing a modern facility with professionally trained staff for the most severely affected by autism disorders.  The group homes are staffed with personnel who lack training in autism.  

The story is similar in Nova Scotia where adults with autism, like those in New Brunswick, are simply dumped in psychiatric facilities with populations with a variety of mental health disorders:

""I'm happy that the people coming up have the resources I didn't have," said Barbara Gillis, whose 21-year-old son, Paul, is currently institutionalized with people suffering from a range of problems that don't include autism. Gillis, a single mother from Halifax, said she's been fighting to get her son into a properly supported environment to no avail. "What about the young adults that have already come up and didn't have these resources? There's a whole population out there with nothing."

Cynthia Carroll, executive director of Autism Nova Scotia, said there is currently no transition support for young adults leaving high school and there is a "crisis level" lack of residential support for adults as they get older. "They really need to start looking at services and supports for adults right across all government departments," said Carroll.
Health Minister David Wilson said with current budget restraints the province feels it can do more by targeting autistic children at an earlier age. However, he conceded more has to be done to improve support programs for older children and adults living with autism. "There's still work to be done," Wilson said. "We've got to continue to look at ways to support individuals young and old who have autism.
The only promises from politicians that count however are firm and clear  commitments to take specific actions within an identified time frame.  The Nova Scotia Health Minister's rhetoric about adult autism support amounts to "not today but maybe tomorrow".   You don't have to be a political scientist  to know the value of such promises. 

Wednesday, June 27, 2012

Are Autism Disorders Morphing Into Einstein Turing Syndrome?

Autism disorders are misrepresented in the mainstream media, on the internet and, as has been confirmed many times, in autism research which excludes those with severe autism disorders simply because it is too difficult to work with severely autistic children and adults. One of the sorry ways in which autism disorders are misrepresented is whenever mention is made of historical geniuses like Albert Einstein or Alan Turing whose personal qualities are attributed to undiagnosed cases  of autism.  Autism is portrayed as a different way of thinking, the foundation of genius, with no mention made of those severely affected by autism and the large numbers of autistic persons with intellectual disabilities. Maybe though it is time to divide the autism spectrum into two groups, one for whom autism is a disorder under the DSM and ICD diagnostic manuals and one for whom it is a matter of genius and identity, a different way of thinking?

Arguably the silliest speculation of all is the notion that Jesus Christ was autistic a theory promoted by one Alan Griswold of Autistic Symphony fame and the MDs, PhDs and RNs who co-authored  the article Did Jesus Christ Have Autism? An Interdisciplinary Evidentiary Analysis into the Psychiatric and Medical Literature Supporting the Hypothesis That Autistic Spectrum Disorder (ASD) Was the Root Cause of a Terrible Cross to Bear.  The underlying message of such fanciful speculation is simple ... autism is not a disorder ... it is a just a different way of thinking that includes every genius known to history.  

Anniversaries such as the recent 100th anniversary of the birth of Alan Turing the genius who contributed so much to our modern computer world and to the Allies efforts in WWII, and who was prosecuted for his homosexuality, inevitably spur more of the autism as genius rhetoric that obscures the real challenges faced by persons with classic and severe autism disorders: (1) (2, see in particular the comment section).

A significant question to me is whether the DSM5 committee is going in the wrong direction by uniting the autism disorders into one spectrum disorder varying in severity.  Would it make more sense to describe at least two different disorders? 

One for those who actually suffer from the deficits of severe autistic disorder, the vast majority of whom also suffer from intellectual disability. The other for the higher functioning individuals who identify strongly with history's geniuses and some of whom do not wish to acknowledge the existence of  low functioning persons with autism disorders?  

Why combine under one diagnostic umbrella persons with such different challenges in life, one group who clearly have a neurological disorder and the other for whom the term "disorder"  itself is an affront to be erased from public consciousness?  

Autism and Aspergers, (Einstein Turing Sydrome?), two different realities, two different diagnostic categories, now and in the future?  Since autism is diagnosed by behaviors and functioning levels shouldn`t consideration be given to the possibility that the gaps between those who are severely impaired and those who are capable of great feats of art, literature and science should not be grouped in one diagnostic basket?

Tuesday, June 26, 2012

Major Autism Research Breakthrough: EEG Study Involved Classic Low Functioning Autism Subjects

Two thumbs up for Frank H. Duffy, M.D., of the Department of Neurology, and Heidelise Als, Ph.D., of the Department of Psychiatry at Boston Children's Hospital,  for conducting an autism study involving "classic" lower functioning autism subjects who have been excluded too often from autism research 
resulting in skewed autism research findings

A major autism research breakthrough has been reported in the Science Daily/PR newswire article Computer analysis of EEG patterns suggests a potential diagnostic test for autism. The article is copied in full following my commentary

The study is available online: A stable pattern of EEG spectral coherence distinguishes children with autism from neuro-typicacontrols – a large case control study.

The central finding of the study is reported to be the possibility that the researchers have found reliable EEG patterns to reliably distinguish between autistic children and neurotypical children as young as t wo years old.  Another radical aspect of this study though is that it actually used "classic" low functioning autism subjects. IMHO this in itself is a major breakthrough in "autism" research which has tended to exclude low functioning, classic autistic subjects.  I have highlighted in bold the comments by study researcher Frank H. Duffy which indicate the participation of "classic" autism subjects and the rationale for excluding high functioning autism and Aspergers subjects who tend to dominate (and skew) the existing literature because they are relatively easy to study.

BOSTON, June 25, 2012 /PRNewswire-USNewswire/ -- Widely available EEG testing can distinguish children with autism from neurotypical children as early as age 2, finds a study from Boston Children's Hospital. 

The study is the largest, most rigorous study to date to investigate EEGs as a potential diagnostic tool for autism, and offers hope for an earlier, more definitive test. 

Researchers Frank H. Duffy, M.D., of the Department of Neurology, and Heidelise Als, Ph.D., of the Department of Psychiatry at Boston Children's Hospital, compared raw EEG data from 430 children with autism and 554 control subjects, ages 2 to 12, and found that those with autism had consistent EEG patterns indicating altered connectivity between brain regions – generally, reduced connectivity as compared with controls. 

While altered connectivity occurred throughout the brain in the children with autism, the left-hemisphere language areas stood out, showing reduced connectivity as compared with neurotypical children, consistent with neuroimaging research. Findings were published June 26 in the online open-access journal BMC Medicine. 

Duffy and Als focused on children with "classic" autism who had been referred for EEGs by neurologists, psychiatrists or developmental pediatricians to rule out seizure disorders. Those with diagnosed seizure disorders were excluded, as were children with Asperger's syndrome and "high functioning" autism, who tend to dominate (and skew) the existing literature because they are relatively easy to study. The researchers also excluded children with genetic syndromes linked to autism (such as Fragile X or Rett syndrome), children being treated for other major illnesses, those with sensory disorders like blindness and deafness and those taking medications. 

"We studied the typical autistic child seeing a behavioral specialist – children who typically don't cooperate well with EEGs and are very hard to study," says Duffy. "No one has extensively studied large samples of these children with EEGs, in part because of the difficulty of getting reliable EEG recordings from them." 

The researchers used techniques developed at Boston Children's Hospital to get clean waking EEG recordings from children with autism, such as allowing them to take breaks. They used computer algorithms to adjust for the children's body and eye movements and muscle activity, which can throw off EEG readings. 

To measure connectivity in the brain, Duffy and Als compared EEG readings from multiple electrodes placed on the children's scalps, and quantified the degree to which any two given EEG signals—in the form of waves—are synchronized, known as coherence. If two or more waves rise and fall together over time, it indicates that those brain regions are tightly connected. (Duffy likens coherence to two people singing "Mary Had a Little Lamb" together. If they can see and hear each other, they are more likely to sing in synchrony -- so their coherence is high.) 

In all, using computational techniques, the researchers generated coherence readings for more than 4,000 unique combinations of electrode signals, and looked for the ones that seemed to vary the most from child to child. From these, they identified 33 coherence "factors" that consistently distinguished the children with autism from the controls, across all age groups (2 to 4, 4 to 6, and 6 to 12 years). 

Duffy and Als repeated their analysis 10 times, splitting their study population in half different ways and using half to identify the factors, and the other half to test and validate them. Each time, the classification scheme was validated. 

"These factors allowed us to make a discriminatory rule that was highly significant and highly replicable," says Duffy. "It didn't take anything more than an EEG—the rest was computational. Our choice of variables was completely unbiased—the data told us what to do." 

The researchers believe the findings could be the basis for a future objective diagnostic test of autism, particularly at younger ages when behavior-based measures are unreliable. Their most immediate goal is to repeat their study in children with Asperger's syndrome and see if its EEG patterns are similar to or different from autism. They also plan to evaluate children whose autism is associated with conditions such as tuberous sclerosis, Fragile X syndrome and extremely premature birth. 

The study findings complement those of another recent study at Boston Children's, led by informatics researcher William Bosl, Ph.D., and Charles A. Nelson, Ph.D., research director of the Developmental Medicine Center. That study looked at the complexity of EEG signals, another indirect measure of brain connectivity, and identified patterns that distinguished infants at increased risk for autism (having affected siblings) from controls. 

The current study was funded by the U.S. Department of Education, the National Institute of Child Health and Development, the Weil Memorial Charitable Foundation and the Irving Harris Foundation. 

Boston Children's Hospital is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Boston Children's research community. Founded as a 20-bed hospital for children, Boston Children's today is a 395 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Boston Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Boston Children's, visit: 

Meghan Weber 
Boston Children's Hospital 

SOURCE Boston Children's Hospital 

Back to top 

Monday, June 25, 2012

Jean Lewis, Canada's Foremost Autism Advocate, Provides Firsthand History of Canadian Autism Advocacy From an Experienced, Personal Perspective

I strongly encourage anyone with an autistic child or interest in autism services in Canada to watch this video by Jean Lewis, Canada's foremost autism advocate, who has lived and led much of the autism advocacy in Canada over the last decade. 

Jean is extremely well informed, articulate and authentic. She has lived the reality of severe autism and related disorders with her child and she, and her husband Michael, have fought with intelligence and determination to bring services to autistic children and adults in BC and across Canada.


Saturday, June 23, 2012

Autism Is Genetic Eh? Really?

Autism, it's gotta be genetic, even if we can't see the evidence

No one disputes that autism has a genetic link or links somewhere, now if only we can find it ............  or them.

"Researchers say they have identified gene mutations that contribute to autism in three separate studies. The mutations identified were rare and aren’t necessarily present in the parents, only the offspring, which has made finding them difficult for scientists.     [Emphasis added - HLD]

“It just goes to show how complex the genetic architecture of autism is,” says Thomas Lehner, chief of the NIMH Genomics Research Branch, which funded one of the studies and helped to create the Autism Sequencing Consortium. Together, the studies allow scientists to estimate for the first time that some 500 to 1,000 mutations are likely involved in autism, Lehner tells the Health Blog. Abstracts for the studies, which were published in Nature, can be found here, here, and here. 

The work, conducted by three separate research groups on independent patient samples, also confirms earlier research that older paternal age appears a risk factor for the condition."

Wall Street Journal Health Blog, Complex Genetic Mutations Contribute to Autism, Studies Say

Notwithstanding the lack of any specific identifiable genes directly connected  to autism disorders researchers continue to push their beliefs that autism is primarily genetic.  Actually what they are really saying is autism is a disorder found in humans with different genetic makeups for which .... however ... there is no need to devote research dollars to conducting serious environmentally focused autism research.  After all if man made toxins are involved in any way in causing or triggering autism disorders then presumably corporate profit making ventures could be put at risk.  Better to mention paternal age again and invent a new genetic paradigm to explain why, notwithstanding the lack of any real evidence, we have to believe, we must believe, that autism is genetic.  Profits depend on us being devout in our "autism is genetic" faith.  Oh and by the way autism is not really rising despite changes in estimates, in less than two decades from 1 in 500 to 1 in 88.  

The explanations for the failure to identify specific genes connected to autism are beginning to sound funny.  Or they would be funny if autism research wasn't a serious matter for those who are, or whose children are, severely impacted by autism disorders. 

While parents and researchers calling for more environmentally focused autism research are demeaned or, at best, ignored, the autism research community by and large remains unwavering in its devoutly held faith that autism is, autism has to be, genetic.

The word from the autism research community remains the same: Carry on regardless.  Carry on regardless of whether we see any evidence to support the autism is genetic belief.

Thursday, June 21, 2012

Conor Misses His So-Called "Segregated" Autism Schooling BUT Summer Helps A Lot

Conor Doherty, enjoying a summer outing with Dad 
in Fredericton, the green city.

In New Brunswick advocates of extreme, everyone in the classroom, inclusion like to describe my son's accommodations as "segration" as though it could be equated with the racially segregated schools of the old American south.  Conor in fact attends a neighborhood school and has ample opportunity to mix with other students, both challenged students in his High School Resource Centre and throughout Leo Hayes High School.  He is well liked and has friends in both the Resource Centre and in the rest of the school. I have often, and I am mean often, seen kids approach Conor with big smiles and greet him.  His instruction, his ABA based instruction, is received in a separate quieter area and he absolutely loves going to school.  Anyone who has worked with Conor in his high school or previously in middle or grade school can confirm these facts.  

Conor does not receive a "segregated" schooling to use the pejorative terminology of NB's very influential full inclusion activists in the CACL and NBACL.  He receives an evidence based, flexible, inclusive education that accommodates his serious autistic disorder and developmental delay hallenges. Conor loves school. When school ends each year it is a difficult time for him. 

Summer heat and humidity can cause problems too but we do get outdoors, a lot,  in Fredericton, the green city, which we both love and it helps a lot.  The last couple of days we have done some bridge walking to Fredericton's south side for fresh air, exercise and of course ... treats.  (Conor has a new "walking" shirt, one of Dad's old loose fitting shirts to go over his T-shirts).

Conor would like to see September arrive quickly, and resume the "segregated" education that Conor loves and some misguided adults demean,  but he and his ol' Dad will enjoy the summer in Fredericton,  this very habitable green city.

Wednesday, June 20, 2012

Building a Bigger Tent Is A Badly Needed Critical Analysis of New Brunswick Inclusive Education Policies and the Porter Aucoin Report

New Brunswick Legislature Fredericton 
Photo By Harold L Doherty June 17, 2012

The New Brunswick government needs to do a critical analysis of the Porter Aucoin inclusive education report. Porter Aucoin is not an arms length objective review of NB inclusion practice and policy. Too many ties between Alward-Carr government and Porter-Auocoin-NBACL-CACL. Paul Bennett and Yude Henteleff are two excellent external critics whose views should be considered carefully by NB government in setting inclusion policies if the 2009 NB government policy defining inclusion as evidence based on the best interests of the individual child is to mean anything. Yude Henteleff's 2004 paper on flexible, evidence based inclusion recommendations consistent with Canadian jurisprudence is already posted and his presentation to Atlantic Human Rights Centre inclusive education review June 14-16-2012 at the Crowne Plaza in Fredericton will be posted on this site when it is made available to participants.

Building a Bigger Tent Serving all special needs students better in New Brunswick’s inclusive education system  by Dr. Paul W. Bennett, June 2012  is an arms length analysis that has been made available free of charge to New Brunswick. From the Building a Bigger Tent summary on the Atlantic Institute for Market Studies (AIMS) Facebook page:

"Many research findings in New Brunswick’s 2012 report Strengthening Inclusion, Strengthening Schools raise serious questions about whether the existing ‘full inclusion’ model can ever serve the diverse and complex needs of today’s students. There is a place – and perhaps a need – for specialized learning programs where provincial education authorities build a bigger tent. 


It’s time for New Brunswick to embrace 21st century education. Bennett recommends a provincial review of New Brunswick’s current model of special education delivery, and ultimately the development of a new continuum of service, including self-contained classes and special education alternative schools."

New Brunswick education policy is important to all New Brunswickers.  It is of particular importance to students with special needs who require accommodation within our education system, including those students for whom the mainstream classroom is not an appropriate or even a safe learning environment. The contributions of serious analysts like Yude Henteleff and Paul Bennett should not be ignored in  designing policies to address the complex and demanding challenges facing special needs students in our education system.

Sunday, June 17, 2012

Telegraph-Journal: New Brunswick Public Education Must Be Inclusive and Flexible

A New Brunswick Telegraph-Journal June 16, 2012 editorial, reprinted in its' entirety below, has called for a flexible model of inclusion for New Brunswick public education.  The editorial references education policy analyst Paul Bennett who gave a presentation Thursday at the Atlantic Human Rights Centre conference on inclusive education.  




It is imperative that public education be accessible to all students. While the Alward government’s $62 million investment in new resources to support inclusion should help, critics say the province’s vision of inclusion itself needs to change.
One of those constructive critics is education policy analyst Paul Bennett. Mr. Bennett gives New Brunswick high praise for its commitment, but he does not believe equal access can be met within the walls of a single classroom. We’re inclined to agree.
The one-classroom model of inclusion cannot meet the needs of all students, as countless parents of children with Autism Spectrum Disorder and severe dyslexia can attest. Why not acknowledge that hundreds of families are not being well-served, and open the door to private schools or transition programs, funded by provincial vouchers, as Nova Scotia has done?
This would give parents greater choice in their children’s education. It would also serve as a better incubator of innovative and effective education practices than public schools can provide, while still being accessible to all.
The education department seems determined to train more teachers who are interested in special needs instruction. Given the low performance of New Brunswick schools generally, though, we’re not hopeful that New Brunswick can train its way out of this problem.
The average quality of schooling in New Brunswick is among the poorest in Canada. It is unlikely that the turnover in teachers who are better trained will occur fast enough to meet the needs of average students, let alone those who require specialized instruction.
Wouldn’t student needs be served better by permitting the creation of new schools and programs specifically for students with special needs, staffed by professionals who specialize in this area of education?
These schools would not replace classroom inclusion, but augment it by providing alternatives for those students whose needs are greatest.
In Nova Scotia, parents already have access to private, independent special education schools. Since 2004, when the Nova Scotia Tuition Support Program was created, the provincial government has even provided short-term funding for students to attend designated special education private schools, with the goal of transitioning back into public schools at a later date.
We are proud to live in a province which has affirmed that all students have an equal right to education. Surely it is not a big step to admit that to achieve this equality of opportunity, some special needs students will require resources outside the standard classroom.

Saturday, June 16, 2012

Rational, Flexible Inclusion: The Fully Inclusive Classroom Is Only One Of The Right Ways To Meet The Best Interests Of The Special Needs Child (Henteleff, 2004)

Attached hereto is a PNG copy as well as a PDF copy link to "The Fully Inclusive Classroom Is Only One Of The Right Ways To Meet The Best Interests Of The Special Needs Child"(2004) by Yude M. Henteleff, C.M. Q.C., L.L.D. (Hon).  Mr. Henteleff outlines succinctly and compellingly the legal basis for a rational, flexible model of inclusive education, one which will permit children with special needs, including severely autistic and developmentally delayed children like my son to participate in a safe, meaningful and rewarding education.  Here in New Brunswick the Porter-Aucoin report is pushing us Back To The Future, back to the simplistic and fundamentally flawed mid 1980's approach of forcing all children, regardless of their needs and challenges, to receive their education in the mainstream classroom.  The CACL and NBACL are now imposing their simplistic "vision" on schools in New Brunswick contrary to the 2009 NB policy defining inclusive education as being evidenced based and based on the best interests of each individual child. 

Dr. Henteleff's 2004 paper represents an articulate, sophisticated analysis by one of Canada's most distinguished lawyers who has represented many disability groups including autism groups and learning disability association groups over a long and distinguished career. Unfortunately, our current NB Premier David Alward and Education Minister Jody Carr are faithful followers of Gordon Porter's   simplistic inclusion "vision".  Hopefully future NB governments will just walk away from that "vision".  The Henteleff critique, first presented to the CACL in 2004 and maintained on their web site until recently provides a rational, flexible alternative for future NB administrations.  Mr. Henteleff also presented a new submission at the Atlantic Human Rights Centre inclusive education conference.  It will be made available to participants after the conference and I will post it on this site.  

Many thanks to Mr. Henteleff.  And thanks to my friend Claire who was kind enough to provide me with access to a copy of the attached paper.

Thursday, June 14, 2012

Hey Claire, I Bumped Into Yude Henteleff Today at the Atlantic Human Rights Centre Inclusive Education Conference in Fredericton!

L: Yude  M. Henteleff, C.M., Q.C., L.L.D. (Hon.)     R: Harold L. Doherty 
at the Atlantic Human Rights Centre Inclusion Conference
Crowne Plaza Fredericton-Lord Beaverbrook, June 14, 2012 

(NOTE: Apparently the CACL has removed Mr. Hentelleff's paper from their website)

Presented by Yude M. Henteleff, C.M., Q.C.
to the
NOVEMBER 24, 2004

Imposing a standard, namely that the inclusive classroom meets all needs, is a perception not based on reality and is stereotypical. In other words, the standard takes the position that one environment meets the needs of all special needs children. By its very nature, such a standard is discriminatory, as was made clear by the Supreme Court of Canada in the Meiorin, Grismer, Law and Mercier decisions.   (Y.M. Henteleff)

Claire I couldn't help but think of you, when I saw Yude Henteleff at the inclusion conference today. We both respect Mr. Henteleff's outstanding work advocating for disability groups and advancing a rational, flexible model of inclusion that accommodates the challenges faced by children with severe disability deficits. 

Wednesday, June 13, 2012

What Do NB Teachers Really Think About The Porter-NBACL Full Inclusion Model?

What do New Brunswick teachers really think about the full inclusion model  which has been pushed relentlessly in NB schools by Gordon Porter and the New Brunswick Association for Community Living since the mid-1980's? The truth is many teachers recognize that extreme, everyone in the regular classroom inclusion does not work.  Teachers know this but they are afraid, for good reason, to speak up while they remain employed in New Brunswick schools. Speaking up and openly criticizing  the Inclusion Illusion would be detrimental to their careers and livelihoods and they know it.

Full inclusion, as defined by Gordon Porter, means "everyone in the mainstream classroom" as Mr. Porter preached to a Newfoundland audience a few weeks ago:

"Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter."

I am a supporter of flexible inclusion and I am a critic and opponent of the full inclusion, everyone in the mainstream classroom inclusion, of Gordon Porter and his followers with the NBACL.  This father of a son with Autistic Disorder, and profound developmental delays learned long ago that Mr. Porter's  regular classroom is not appropriate for my son's learning requirements. It caused him harm and resulted in self injurious behavior repeated, severe biting of his hands and wrists. Today he is very well accommodated by a flexible inclusion which sees him receive his instruction in a quiet area outside the regular classroom.  He starts his day, has lunch, and has friends in a resource center in his high school with other students with challenges, challenges which Gordon Porter's full inclusion model would not accommodate.  He attends many events with his group from the resource centre and he loves, he absolutely loves going to school.

On my son's behalf and as a representative of the Autism Society New Brunswick I participated in the MacKay and Ministerial Inclusion reviews.  During these proceedings I was approached by teachers who thanked me for speaking out for a flexible model of inclusion.  Some children with an Autism Spectrum Disorder can function in the regular classroom, some can not.  Teachers can see that in their daily work, in respect of autistic students and others with severe challenges. Teachers though,  like most employees, know which way the wind blows where they work.  They know that if they preach the full inclusion gospel according to Gordon Porter they will be viewed favorably by the higher ups in the education department and the de facto education department ... the New Brunswick Association of Community Living. They know that if they publicly criticize full inclusion their careers could suffer. 

My experience during the inclusion review proceedings has been replicated after I have spoken publicly on television and radio.  I have been approached by many teachers who told me that they and their colleagues support my efforts in speaking up about the shortcomings of full (extreme)  inclusion. I have been encouraged by many teachers to continue critiquing the full inclusion model which governs the mindset of those who determine how our children will be educated.

I don't expect anyone in the office of the Minister of Education and Early Childhood Development or at the "bricks and mortar" building of his colleagues at the NBACL to believe what I have stated.  They do not accept actual direct evidence that conflicts with their full inclusion model and they will certainly not accept my hearsay evidence based on undisclosed witnesses to what actually happens in our regular "inclusive" classrooms. The full inclusion true believers simply ignore such evidence and blame problems on the students themselves or argue that more resources are needed in the classroom under the guidance of classroom teachers.  Then everything will work smoothly.  

The full inclusion model of Porter and the NBACL is not an evidence based approach to education.  It is at best a  feel good philosophy.  At worst it is an illusion.  The full inclusion illusion.  One that can literally cause harm, mental, emotional, even physical harm, to some children for whom it is not an appropriate learning environment. This father of a son with severe challenges knows it.  The teachers who work on the front lines educating our children also know it.

The attached document is the 2005 report of an executive committee of the New Brunswick Teachers' Association which describes New Brunswick schools as being in a state of crisis.  The NBTA's report talks about the classroom composition concerns expressed by the teachers they represent but denies that the issue is classroom composition; the issue for the Association is the need for more support in the classroom.   If you look under the politically correct tap dancing of the NBTA's report though there is an honest recognition in many of the statements of its' members that classroom composition is in fact the issue.  I have posted the 5 page summary of the committee's recommendations following my comments in case the document is removed from the NBTA web site in future.

Saturday, June 09, 2012

Thank You To All Who Were Involved With NB`s Incredible Autism Success Story: The UNB-CEL Autism Intervention Training Program

The foundation for the autism service gains that have been made in New Brunswick over the past several years has been dismantled and shut down for good. The screen image above is what I found when I did a search of the University of New Brunswick web site looking to see what, if any, course would still be offered by the UNB-CEL Autism Intervention Training program.  The content section of the screen, however, was literally blank. The UNB-CEL Autism Intervention Training Program is no more.

I was aware for some time that the Alward-Carr-Porter team would not continue to train education assistants and resource teachers through the program.  Autism training will be done "in house" by an education department hierarchy that resisted the program in the first place because it wasn't their project and because they thought it cost too much.  Now pre-school early intervention autism workers will no longer be trained at UNB-CEL either.  Apparently Minister Carr and his combined education-early childhood development team feels that it can do better by consulting experts to instruct our autism intervention agencies on how to provide their own versions of in house early autism intervention.  Minister Carr and Gordon Porter  will call the services they oversee evidence based but an evidence based autism intervention requires a level of quality and integrity that in house training subject to conflicting adult interests is unlikely to meet.

The UNB-CEL Autism program arose as a response to determined advocacy by parents of autistic children.  The program provided NB`s autistic children and students with quality and integrity in the intervention and instruction they received.  Former Premier Bernard Lord responded very personally, and very constructively,  despite the at times combative nature or our advocacy, to our requests.  His government looked for service providers that could provide the necessary early intervention services.  Rather than import and pay huge fees to import services from Ontario a steering committee of various autism professionals, academics and parents involved with autism issues thought it would be a good idea to develop a program using local expertise.  Premier Lord, and after him Premier Graham,  agreed and UNB-CEL provided the autism training for the services our children needed.

Anne Higgins, a brilliant administrator who at that time was with the University of New Brunswick was a key part of the group that founded the UNB-CEL Autism Intervention Training program.  She put a tight organizational plan together and implemented it  with incredible efficiency.  UNB Professor Emeritus (Psychology) and clinical psychologist Paul McDonnell and UNB Psychology professor Barb D'Entremont led the team at UNB that developed the content for the program.  Private autism agencies were established and the UNB-CEL Autism Intervention Training program was used to train early autism intervention and clinical supervisors for New Brunswick's two official language groups.

New Brunswick parents of autistic children advocated for an extension of the UNB autism training to the school system with requests that teacher assistants and resource teachers working with students with autism also receive the UNB autism training.  Both Premier Lord and Premier Graham, in direct discussions with representatives of New Brunswick's autism community, responded positively.  

The training of early intervention and education personnel working with autistic children and students met with fierce resistance, some of it from career bureaucrats in the higher echelons of the Department of Education and some of it from New Brunswick's inaccurately characterized "inclusion" and "community" movement.  Now with Minister Carr and NBACL inclusion icon Gordon Porter in charge of both early childhood development and schools the UNB-CEL autism training is no longer wanted.   The foundation of our autism gains in recent years has been abandoned. My comments are gloomy but they reflect current realities under this administration. 

I would like to end this comment on a positive note though by thanking all persons involved with the UNB-CEL Autism Intervention Training Program, particularly Anne Higgins, Paul McDonnell and Barb D`Entremont.  I would also like to thank all the parents whose efforts in advocating for early intervention and education assistance for our autistic children led to the establishment of the UNB-CEL autism training.  Without determined, focused autism parent advocacy there would have been no UNB-CEL autism program. Thank you all.

Friday, June 08, 2012

Dear Premier Alward: A Request for Adult Autism Care in New Brunswick

Photo by Harold L Doherty, May 20, 2012

Dear Honourable Premier, Honourable Ministers and all other respected recipients:

The subject of this post New Brunswick STILL Needs a Modern Adult Autism Residential Care and Treatment Facility is the title and subject of a comment on a blog I have operated for the past six years, Facing Autism in New Brunswick. Apart from operating that blog I have been active for 12 years in autism advocacy in New Brunswick for the simple reason that I have a son Conor, now 16, who is severely autistic with profound developmental delays. As a former Autism Society New Brunswick president and long time spokesperson for the Autism Society I participated in many meetings and proceedings with officials of both the Lord and Graham governments on early intervention, education and adult care issues affecting autistic persons in New Brunswick. Under both of those governments people in NB saw substantial gains in early intervention and education, to the point that two American autism experts, David Celiberti and Eric Larsson, reviewed and recognized NB as a model that should be considered by other provinces for replication in their jurisdictions.  In adult autism care, however, no significant gains have been made over the past dozen years. Group homes with untrained staff are still the norm.  The alternative, for more severely affected autistic adults, people with conditions very similar to my son, is a life spent in psychiatric care at the Restigouche hospital or even in a general hospital. 

I ask that you all open your minds to the realities confronting adults affected by autism in New Brunswick some of whom, like my son, will require life long residential care and treatment.  Several years ago a youth was housed temporarily in a facility on the grounds of a youth correctional centre in Miramichi.  A variety of other ad hoc solutions including exporting our autistic adults out of province, and even out of the country, to Spurwink in Maine, have been implemented at substantial financial cost and emotional cost to the autistic persons and family members involved.  A permanent, modern and professional solution has been badly needed for many years. Simply repeating phrases an cliches like "community" and "inclusion" endlessly will not solve the problem.

A coherent, rational and expert informed opinion has previously been proposed, but never acted by any NB government.  Paul McDonnell, a UNB Professor Emeritus, Psychology and practicing clincial psychologist helped educate the parents of autistic children who advocated for the early intervention and autism specific services which were enjoyed during the Lord and Graham eras.   On the CBC website in September 2010 he offered a proposal to improve NB's adult autism care and treatment needs.  I posted it on my blog comment cited above and do so again:

"We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

To Paul McDonnell's comments I would add that if this government, or the next, wish to consider the model he proposes including the secure centre for the long term care of the severely autistic and for a source of expertise for the community based homes for less severely impaired autistic adults then Fredericton is the only viable location.  I say that not because I live here at this time. I have lived in many places across Canada as a former "army brat" and as an adult. I travel around NB regularly as a labour lawyer. The Autism Society considered the location of such a centre many years ago and conducted a survey picking Fredericton for the following reasons:

1. Access to NB's autism expertise which is primarily located in Fredericton.
2. Fredericton can provide bilingual service as shown by the UNB-CEL Autism Intervention Training Program itself which provides to both official language groups. 
3. Central location.  Locating in a corner of the province does not assist families around the province in visiting with autistic family members receiving temporary care or residing in a professional autism centre.

To the reasons previously considered by the ASNB I would add a 4th personal reason.  Fredericton enjoys throughout the city a very "green" natural environment and trail system ideal for inexpensive, healthy, walking recreation of all persons including those severely affected by autism disorders. My son and I have benefit tremendously from this incredible resource. 

Autism is shorthand for Autistic Disorder and related neurological disorders which next year will be combined and known as Autism Spectrum Disorder (ASD) in the revised DSM-5 Diagnostical and Statistical Manual of Mental Health Disorders.  The Centers for Disease Control in the US, a highly respected authority, estimates that the numbers of persons with ASD is approximately 1 in 88. 

As the father of a son with severe ASD, I ask that this government begin work as soon as possible to provide a center with professional expertise as described by Professor Emeritus Paul McDonnell, one that can provide expert assistance to the community based group homes around the province.  This has been discussed for over a decade.  New Brunswick adults with autism can not afford to wait another decade before action begins to be taken.


Harold L Doherty 
Fredericton NB 

cc. media, Facing Autism in New Brunswick

Thursday, June 07, 2012

New Brunswick STILL Needs a Modern Adult Autism Residential Care and Treatment Facility

Restigouche Regional Hospital, Campbellton New Brunswick

Centracare Long Term Mental Health Services Center, 
Saint John New Brunswick

New Brunswick adults with severe autism disorders need an alternative to the Centracare and Restigouche hospital models as recommended by NB Autism Expert Paul McDonnell in a 2010 CBC Analysis :

"We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

A young Saint John New Brunswick woman has, thankfully, found a new home in a special care facility as reported by CBC in Autistic Saint John woman finds new home. The article indicates that the young woman's mother is relieved but is still concerned about her daughter's future.  The mother's concerns are similar to my own concerns about my son and severely autistic adults in New Brunswick.  Everyone should be concerned.  New Brunswick governments, both Liberal and Conservative, have pretended to deliberate on this issue for years without providing a real solution for the long term residential care and treatment needs of adults with severe autism issues.

There is a reference in the article to the review of youth mental health needs by former Ombudsman Bernard Richard.  What the article does not address is the fact that Mr. Richard and his advisers at the Office of the Ombudsman refused during the review in which I participated to give serious consideration to the possibility of recommending that the government establish a facility for the permanent residential care and treatment of youths and adult with autism disorders.  The need for such a facility has been highlighted by stories similar to the young SJ woman's story for many years but the problem is simply ignored. 

Any attempt to discuss development of  a facility is treated with disdain by adherents to the New Brunswick Association for Community Living philosophy  that dominate New Brunswick public policy making for persons with disabilities.  Rather than find a sustainable, systemic  residential care and treatment solution  for persons with serious autism issues who can not live in group homes the NBACL dominated public policy mindset is to let severely autistic adults live in Psychiatric and other hospital wards,  live temporarily on youth prison grounds and hotels and even send them out of the country to long term care and treatment, at considerable public expense in Maine. For public decision makers who adhere to this philosophy anything is better than acknowledging that the simplistic community ideology does not provide a realistic, sensible solution for youth and adults with severe autism disorder deficits.

Autism experts have made submissions to the New Brunswick government on these issues and I have made representations as an autism society representative  to governments both Liberal and Conservative, about the need for a Fredericton based (close to NB's autism expert base) adult autism residential care facility, spoken with media and commented several times over the last decade all to no avail:

October 2005, Toronto Star

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
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.
As I am quoted saying in the 2005 Toronto Star we (Autism Society NB) had been pushing for several years for better autism care facilities here in NB.  The 2005 incident did not result in action from the Liberal government of the day.

Doherty, a lawyer, is now in the fight of his life. As Conor nears adulthood, Doherty’s greatest worry is that the province doesn’t have the proper services for someone like Conor to maintain a high quality of life when they leave the public school system. He’s afraid Conor will fall through the cracks.
“My big fear is that he will simply be put into a room in Campbellton in the psychiatric hospital without any real life to live once I’m too old or deceased.
“On the other hand, I don’t want him dumped into one of the group homes they have.
“They don’t have staff trained to help him and they don’t have enough programs to really work with someone like my son.”

Autism is a developmental disorder that affects a person’s communication and social skills. The severity of the disorder ranges from the severe form that Conor has to Asperger’s, a more mild form depicted in movies like Rainman. The Centre for Disease Control and Prevention says one in 110 children have autism.

New Brunswick provides care both in a patient’s home and in residential facilities for more than 6,250 adults under 65 with disabilities, including autism, says Department of Social Development spokesman Mark Barbour.
But Barbour admits the province needs to do more to help autistic adults.
“There is a need for more specialized services for autistic youth and adults, whose behaviours or conditions are severely impaired.
“These individuals require services and supports designed to specifically meet their high care needs.”
The province wants to build an autism residential facility, which would provide permanent care for severely autistic adults who can’t live on their own, Barbour said."

Department of Social Development spokesperson Mark Barbour's March 2011 comments about the province's desire to build a permanent care for severely autistic adults have not been followed by any subsequent public statements to indicate that the stated intention was anything more than a public relations sound bite.

June 2011 - Facing Autism in New Brunswick 

"In Autism resources in N.B. are a 'patchwork system' Jacques Gallant of the Times & Transcript has reported on the state of autism services here in New Brunswick (Canada, not New Jersey).  As Mr. Gallant reports, our early autism intervention services have received justified praise and our schools have made significant progress although much improvement is needed especially in rural schools. I am interviewed and discuss, in particular, my concerns about the wholly inadequate state of adult autism specific residential care facilities in New Brunswick.  We have group homes with untrained staff who can't accommodate the most severely challenged autistic adults and we have psychiatric hospital in northern New Brunswick far from most of our population.  Other than that we have resorted to temporary housing in hotels, general hospital wards, youth prison grounds and shipping our autistic population out of the province and even out of the country to nearby Maine.  New Brunswick needs an autism specific residential care facility, based in Fredericton, close to the autism expertise that has been developed at the UNB-CEL Autism Intervention Training program and the Stan Cassidy Centre Autism team.  The center should have a variety of configurations and buildings to accommodate the differing needs of the range of autistic adults on the spectrum.  It should have the trained staff and quick access to the autism professionals in Fredericton to help provide continued adult education, recreation and life enjoyment opportunities for autistic adults in New Brunswick. " 

Costs have always been a challenge in establishing a permanent residential care facility for New Brunswick adults with severe autism.  That is a given and always will be.  There are however serious costs associated with the failure to build such a facility.  The primary consideration blocking the establishment of a residential care facility in Fredericton where autistic adults could receive some expert autism care during their adult years has been the overwhelming domination of social policy decision making by the "community", "inclusion" mindset of the NBACL and its partners in government.  It is simply not possible for those who subscribe to that belief system to consider alternatives. 

During the last election UNB Psychology Professor Emeritus and Clinical Psychologist Paul McDonnell, New Brunswick's foremost autism expert, who has done more for autistic children and adults then anyone else in the province commented on CBC about the need for an adult autism residential and treatment facility:

September 2010, CBC, N.B. can be a leader in autism services (Analysis, Paul McDonnell)

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

What is needed is a range of residential and non-residential services and these services need to be staffed with behaviorally trained supervisors and therapists.Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities.The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger's Syndrome that have no access to professional services of any kind.

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

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

The  realities facing severely autistic adults in NB have been clear for many years.  Periodically those realities show up in, usually unpleasant, media reports.  Our governments however have simply chosen to ignore those realities.  They are stuck, not on financial costs but on their ideological mindset, the refusal to implement a system as described by Professor McDonnell.  New Brunswick's autistic adults need a centralized, adult facility in Fredericton close to our autism expertise which could provide permanent residential care and treatment for severely autistic adults and could provide expert assistance to autism specific adult group homes, operating with autism trained staff, in communities around the province.   Such a system would actually address the adult care realities that surface periodically in media reports and help New Brunswick's severely autistic adults live and enjoy their adult years.