Autism Society NB Advocacy History: Saving The Stan Cassidy Centre Autism Team

It is difficult to say, as an outsider, what factors weigh most heavily in the minds of public decision makers when they make decisions which impact a community, especially a vulnerable community like children with tertiary level care requirements.  

In May 2005 it was announced that a very valuable resource was going to be closing in New Brunswick. There would be no new patients accepted for treatment by the Stan Cassidy Centre for Rehabilitation tertiary care autism team.  The announcement sent shock waves through most of New Brunswick's autism community, at least  outside Saint John where that city's CACI leader Debbie McDonald was interviewed on CBC radio and took the position that the closure of the Stan Cassidy Centre autism team was a good thing: 

"wow this is too hard to believe … but in some ways I think its kind of good that the Stan Cassidy is kind of toning down its autism um efforts and kind of focusing on what they do really well, which is rehab you know rehab care center for a … for a variety of issues"

In the rest of the province, from Moncton to Maugerville to Fredericton to Miramichi and to points in between the reaction was different. Under the leadership of the Autism Society of New Brunswick we voiced our outrage as parents of autistic children,  and, to their full credit, the decision makers listened and responded meaningfully. The Stan Cassidy Centre tertiary care autism team was brought back from death's door and is today a vitally important element in the delivery of New Brunswick's autism service.  The Centre's role is even more important as an autism resource now that the Province of New Brunswick, under the Alward-Carr-Porter government,  has walked away from the internationally recognized UNB-CEL Autism Intervention Training program as the training agency for early intervention workers and education aides and resource teachers working with autistic children and substituted in its place in house training with an inevitable loss of quality and integrity. 

The letters that follow are a small but significant sample of the Autism Society New Brunswick advocacy that was exerted in order to revive the Stan Cassidy Centre's tertiary care autism team.  It was the kind of effort that is required of parents today, all of us, dinosaurs and rookies alike, if we are to preserve NB's autism gains in early intervention and education and accomplish something in adult  autism residential care and treatment.  An adult residential treatment facility is needed in Fredericton near our province's autism expertise.  

We must revive the spirit that let to our initial gains to protect those gains to the extent possible and to protect the lives of our autistic children as they .... and we ... grow older.  Governments will often ignore autism problems unless parents speak up.  

We have done it before and we can do it again. 

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Dear Minister Robichaud: 

It has come to our attention that officials at the Stan Cassidy Centre for Rehabilitation have unilaterally decided to stop accepting referrals of pediatric patients with Autism Spectrum Disorder (ASD). Our understanding is that currently 20% of the pediatric referrals to Stan Cassidy are for those with ASD.Needless to say, if this decision is allowed to stand, it would be a devastating development for those families that rely on this centre for services such as speech and occupational therapy. These families would be left without services in some cases and forced to fend for themselves. It would also leave a hole in an already insufficient network of services for individuals with ASD.

We find it unacceptable that the Autism community was not consulted on this decision. We request that this decision be reversed until such time as we in the Autism Community have had an opportunity to make the case that this decision will unduly punish many individuals who rely on the treatment they receive at the Centre.

I would respectfully request an immediate meeting with members of the Autism Community including representatives from the Autism Society of New Brunswick to discuss this matter.

Your prompt attention to this issue would be greatly appreciated. 

Sincerely, 

Luigi Rocca

President

Autism Society of New Brunswick


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NB Telegraph-Journal | News - Other

As published on page B6 on July 13, 2005

Changes made at autism treatment centre panned

BY SHAWN BERRY

Telegraph-Journal

Parents of autistic children say they want a sit-down with the health

minister before any changes are made to the way autistic patients are

treated at Fredericton's Stan Cassidy Centre - New Brunswick's only

neurological rehab centre.

While the centre will continue to treat autism patients and those on its

waiting list, pediatricians were recently asked to stop referring new

patients.

"It baffles me that they can turn their heads and make these kinds of

decision without any consultation," says Luigi Rocca, president of the

Autism Society of New Brunswick.

But Dr. Ron Harris, administrative director of the Stan Cassidy Centre for

Rehabilitation, says the decision was necessary.

"The problem we face is one of sustainability of service," he said, adding

that pediatricians will be asked to continue making referrals.

The centre's children's program provides treatment for children with brain

and spinal injuries, degenerative muscular diseases, complex cerebral palsy

and complex developmental delays.

Up to now, Dr. Harris said, the centre's been lucky to find professionals

who have been able to combine their expertise in rehabilitation and learn

about autism.

But it's a situation he doesn't think will last.

Rehabilitation and treatment for autism patients require whole different

sets of skills and training, he said.

"We're going to go out there and recruit traditional replacements who have

the skills necessary to take a six-year-old with a brain injury and provide

service to them - the dilemma that's created is the services we've provided

for autism need to be re-developed."

Autism patients would be better served by "a team that's dedicated to the

kind of challenges autistic spectrum children present," he said.

It will take a year to get through the waiting list they already have, and

over the next 12 months, the centre will be working with the province, the

health authority and other major stakeholders to help develop a new system

of care for autistic children.

Still, Mr. Rocco worries about the decision.

"I'd like to see them reverse the decision and consult with our

representatives to talk about a plan. And if Stan Cassidy is not going to be

able to work, we need a plan before they cut off their services to autistic

children to make sure there is going to be a seamless transition."

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NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 19, 2005

Centre's expertise valued by autistic community

The following letter was sent to Ron Harris, the director of the Stan Cassidy Centre in Fredericton:

I am a parent of a child on the Autistic Spectrum Disorder. I am deeply distressed to hear Stan Cassidy will no longer accept referrals or serve this population of children. I implore you to reconsider. Your decision to no longer provide services to our autistic children will have a profound and direct impact on the quality of life of our children.

For parents who were fortunate to have some intervention from the Stan Cassidy Pediatric Team, it meant the lives of their children improved to the point where they learned skills to cope within a school environment. It also gave parents the tools to teach skills, thus improving their children's lives at home.

Eliminating this service is a an absolute deal breaker.

Our older children for the most part have no service, and for policy makers within your organization to eliminate such an essential service will only serves to increase the burden on parents who are already stretched to the max.

Please recognize the consequences of your decision. It will be detrimental on the lives of autistic children and their families.

I would like to add, your pediatric team of professionals always gave me hope, encouragement and a direction that would improve the quality of life for my child. Without their guidance and direction, my child would not be where he is today.

LILA BARRY

Miramichi

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Daily Gleaner | Readers' Forum

As published on page C7 on July 19, 2005

Decision on autistic children doesn't add up

This is a copy of a letter sent to the Stan Cassidy Centre for Rehabilitation, pertaining to their change of mandate.

When first I heard of the decision to discontinue services to autistic children, I assumed, giving you the benefit of the doubt, that budgetary constraints had motivated this disastrous and hurtful determination.

Now that I have read your press release, in which you rationalize this decision on the basis that the skill sets required to provide services for autistic children are different than those required for typical treatment provided by the centre, I am stunned.

You are discontinuing a vitally important health and education service without ensuring that a replacement model of service delivery is available.

You offered the absurd rationale that these services are being discontinued because they are not typically provided, and that it will be difficult to find the people with the skills to provide the service.

As someone involved in the autism community, I know you have lost some of those skilled personnel, and some potential personnel, solely because of your decision to discontinue services to autistic persons.

Your excuse has become a self-fulfilling prophecy.

You attempt to reassure us that a new model will be developed to replace the existing model for delivery of the services previously provided by the centre.

After breaking trust with the autism community, you now want us to trust you when you assert that, somehow, a replacement model will be developed when you have no authority or means to provide such a model, other than the one which you are now discontinuing.

Your re-assurances ring as hollow as the excuse you offered for discontinuing these services.

Harold L. Doherty Fredericton

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NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 18, 2005

Children with autism have been let down

It has been brought to my attention that services provided to autistic children by the Stan Cassidy Centre for Rehabilitation have been discontinued effective June 21, 2005. I have no knowledge of under what circumstances this decision was made, and am deeply shocked and dismayed.

To further my dismay, no one from the autistic community was consulted or made aware of this decision. Nine years ago, the Stan Cassidy Centre provided my autistic son the benefit of a multi-disciplinary team assessment, recommendations for his early intervention worker, and our family with the tools he needed for neurological rehabilitation in the form of intensive behavioural intervention. Stan Cassidy provided our son with direct therapy every three weeks until he reached the age to move into the Regional Health Authority Paediatric Rehab Team. Since he has been school age he is under the services of the Extra-Mural Program. Stan Cassidy was a vital link to proper interventions for the autistic population.

Stan Cassidy's multi-disciplinary tertiary team travelled the province, into the rural and remote areas providing assessments and recommendations to parents, schools, local paediatric rehab staff, etc. It is a vital and much needed service.

. The number of autistic children on the caseload at Stan Cassidy must have been high, which further perplexes me as to this decision. Dr. Harris is the executive director of Stan Cassidy, and has been involved in the autism community sitting on various committees. I know because I sit on these committees with Dr. Harris.

Again, children with autism have been let down, and a vital link in the chain of services broken. I would like to know what prompted this decision, and full disclosure made to the public and autism community.

DAWN BOWIE

Maugerville

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October 4 2005

Rehab centre to treat autistic kids 

STEPHEN MACGILLIVRAY PHOTO The Daily Gleaner

Children with autism will continue to be treated at the Stan Cassidy Centre for Rehabilitation. The board of directors of River Valley Health last week reversed a decision made earlier this year - at the administrative level - to stop treating children with autism who do not have a physical disability. The policy was to take effect in 2006. "We're elated," said Luigi Rocca, president of the Autism Society of New Brunswick. "We weren't at all happy with the original decision," he said.

Autism is a serious neurological disorder that typically appears during the first three years of life and has a profound effect on communication, social interaction and sensory integration. Autism, an incurable condition believed to be genetic in origin, affects about one in 500 individuals worldwide and is four times more common in boys than girls. Intense behavioural therapy has been found to help improve social and learning abilities, but experts say that for most autistic people, the condition continues to have some impact throughout life. The original decision to discontinue treatment of some children with autism was announced in May. At a recent meeting of more than 30 stakeholders from across the province, John McGarry, president and CEO of River Valley Health, apologized for the lack of dialogue that led up to that May announcement. 

The Stan Cassidy Centre for Rehabilitation is a tertiary care centre that provides services to children across the province in rehabilitation including speech language pathology and occupational therapy. Diane Morrison, senior vice-president of River Valley Health, said the centre has treated children with autism for many years and built up a level of expertise. "They were looking at their resources and how the resources were being utilized," she said about the initial decision. "Like most services there was more demand than you have the resources to meet." Children with autism represent about 20 per cent of the case load at the centre and required more than 20 per cent of resources to treat, she said. Morrison said it was initially thought that that children with autism could be better served elsewhere, particularly children without a tertiary rehabilitation requirement. If a child with autism did have an accompanying rehabilitation requirement they would still have been seen at the centre, she aid. Morrison said the meeting with stakeholders was positive. Following that meeting, and after further discussion within the organization and at the board table last week, the decision was made to continue the service, she said. 

The board motion to continue the service also called for the creation of a provincial working group to develop recommendations that will help ensure the Stan Cassidy Centre's autism services are sustainable and integrated into treatment across the province. Morrison said it was concerns about sustainability that prompted the May announcement. She said if the centre has just one speech language pathologist and one occupational therapist then the service is fragile. "We need to make sure that we can put in place plans for sustainable service," she said. "We are trying to take systemwide approach to this." Morrison declined to comment on whether the regional health authority would need additional funding from the province to make the autism service sustainable. "I don't want to presuppose the recommendations to come out of the working group," she said. Another meeting with stakeholders is planned for Oct. 14. 

Rocca said the dispute has highlighted the overall lack of resources allocated to autism in New Brunswick. The Stan Cassidy Centre for Rehabilitation does not have enough resources on its own to deal with autism, he said. Rocca said that stakeholders are pleased that when they complained they were taken seriously by officials at River Valley Health. He said they quickly reversed their decision and did not let it drag on for months. "We are starting a meaningful dialogue," said Rocca. "We will be involve in finding a solution. "We hope we get the same response from the provincial government."

Autism Society New Brunswick 2005 Submission to the MacKay Inclusive Education NB Review

May 24, 2005

  

AWM Legal Consulting Inc.
7071 Bayers Road R.P.O. box 22076
Halifax,  Nova Scotia  B3L 4T7 

To Whom It May Concern:

The following  is Autism Society of New Brunswick’s submission to the Inclusive Education: A Review of Programming and Services in New Brunswick committee.

  

Thank you,

Luigi Rocca

President, ASNB

            

“If a child cannot learn in the way we teach, then we must teach in the way he can learn.”  Ivar Lovaas.

Autism presents one of the biggest challenges to the New Brunswick Government’s inclusion policies.  According to the Department of Education’s own numbers, there are no less than 1,000 students in the public school system with Autism Spectrum Disorder.  In the majority of cases, these students are not receiving a meaningful education.  

What Inclusion means to Autism Society of New Brunswick

Inclusion is a philosophy, not a methodology.

-          Inclusion should provide autistic school children access to a REAL education in a positive learning environment which may be inside or outside the classroom, or a combination of both, depending on the individual circumstances of the student with autism with the support of an individually assigned and dedicated Teacher Assistant (TA) formally trained in Applied Behavioural Analysis (ABA) methodologies.

-          Inclusion is more than simply including students with an Autism Spectrum Disorder (ASD) physically in the classroom.

-          “The philosophy 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.”  Medical School, University of North Carolina.

Although the goals and values underlying full inclusion are laudable, neither research nor thoughtful analysis of the nature of supports concurs.  There is very little empirical evidence to support the above definition of full inclusion as it relates to students with autism.

-          Numerous studies clearly show students with an ASD cannot learn in a typical classroom environment.  Students with an ASD learn in a one-to-one setting, exclusive of the classroom.

-          Students with an ASD who have no supports will not learn.  If students with an ASD have supports such as formally trained TA’s in ABA methodology, reinforcers, trials, rewards, visuals, etc., learning occurs.

-          ASD, by its very nature, manifests itself differently with each student.  Therefore, flexibility is absolutely crucial with respect to classroom inclusion.  Some students with an ASD, particularly lower functioning students learn better in a quieter setting outside the classroom while some can learn in a room with their peers; most will benefit from a judicious mix of the two settings.  It is imperative that each student be properly assessed by trained individuals so that a proper and individualized learning environment can be designed for each student.

-          Many students with an ASD will be following a completely distinct curriculum.

-          It is critical to take into account the needs and characteristics of the individual student with autism and apply flexible inclusion policies so as to ensure the highest quality education and development.

What Do We Need

-          Ideally, parents of students with an ASD would benefit most by having teachers trained in ABA methodologies to teach their children on a one-on-one basis.  We realize that with the one-to-one methods required for most autistic students, it would be unrealistic to expect this of the public school system.

-          In general, New Brunswick has some of the highest quality teachers anywhere.  They are, however, sorely lacking in the training and knowledge necessary to plan and implement effective strategies for students with an ASD.

-          The Department of Education does not provide the proper training in ABA to work one-to-one with ASD students.  Faced with this reality, parents have asked for dedicated, individually assigned TA’s trained in ABA.

The Department of Education, the Teachers Union, and CUPE Union representing TA’s have to understand this reality, and adjust their collective agreements to reflect it.  It is imperative that no student be denied a meaningful education due to union or collective agreement issues.  Unfortunately, this often what happens so it is critical that the current mindset be changed.

-          Parents are frustrated and angry at the Department of Education policy on TA assignment, as the TA is for the teacher not the individual student.  Also, TA’s changing on a regular basis from year to year, multiple TA assignments to a student with autism throughout the school day, no guarantee that a TA trained in ABA methodologies will be assigned to an ASD student.

-          The TA Union needs a special designation of TA’s with ABA training to be matched with students   with an ASD.  Currently TA’s with special training in tube feeding or catherization are matched to students with this type of need and the same standard needs to apply with ABA training of TA’s.

-          The members of the Unions should have their rights but they should also be part of a regime which reflects more expressly the need to protect students with autism who are sometimes hurt by job competition process and work jurisdiction disputes between the Teacher and TA unions.

-          Faculties of Education need more learning in Special Education given the number of special needs students.  Universities should be offering degrees in Special Education.

-          To achieve inclusion for students with an ASD proper support is needed in the form of TA’s who can work one-to-one with students with autism, and who are formally trained in ABA methodology, which has been proven effective in educating students with autism.

 A Service Delivery Model 

        -   In New Brunswick ABA Training is available through the College of              Extended Learning: Autism Intervention Training.  The Department of Education to date has not seen fit to provide this training to its TA’s and Methods & Resource Teachers (M&R).  Yet, it is this very training which would squarely meet requirements to teach students with an ASD.

-          The Autism Support Worker (ASW) course offered through the College of Extended Learning is exactly what is needed for TA’s who work in the school system with students with autism.  It would be purely arbitrary to fail to provide the necessary training, or to provide less adequate training to the TA’s who work with students with an ASD in the more challenging school environment.

-          The Clinical Supervisor (CS) training offered through the College of Extended Learning is exactly what is needed for the Resource & Methods teachers.  These ABA trained teachers would be qualified to develop and monitor ABA programs designed specifically to each individual student with autism.  The ASW trained TA will be under the supervision of the trained M&R teacher, to implement the ABA programs with the individual student with autism.

-          Speech Pathology, Occupational Therapy, and Physiotherapy services are offered to students through the Extra Mural Program.  The input from these professionals, which is often required for the student with autism, can be incorporated into the individual ASD students ABA program by the CS trained M&R teacher, followed by the ASW trained TA to implement.

-          The teaching of life skills, especially in the Middle and High School levels; need to be incorporated into the autistic students education program.

-          A specific outline of transition protocols for transitioning from Elementary to Middle School, and Middle School to High School, based on the individual autistic student’s needs.

What Are the Systemic Barriers to Having Inclusion

Again…. Inclusion is a philosophy not a methodology.

-          A teacher cannot instruct an entire class and still provide the level of one-to-one instruction required by a student with an ASD.

-          Inconsistency and misinterpretations of the learning needs of students with an ASD at the Department of Education level, School District level, and School level.

-          Collective agreements between the NBTA and CUPE representing TA’s, do not address the interests of students with an ASD, and some procedures and rights within the contracts can be detrimental to the education of students with an ASD.  Two examples are work jurisdiction and seniority rights.

-          Long wait times for students with an ASD to access Occupational and/or Speech Therapy are not the exception, they are the norm.  Once recommendations are made, it is common for the recommendations NOT to be implemented.  School Administrations, teachers, and M&R teachers do not appreciate the “how” and “why” to implement these recommendations.

-          Organization of Team meetings often falls on the shoulder of the parents.

-          Schools have denied parents requests to have the Department of Education’s Autism Consultant involved.

-          The Department of Education’s required document of the SEP/IEP is not meaningful.  The goals are often vague, not clearly defined, and not a working document.  It is developed and utilized in a variety of ways throughout the province.  Often viewed by parents as a waste of time to incorporate.

-          Educators often label behaviors incorrectly i.e.: bold and rude, when in fact the behavior is communication impairment.  For example, we know of one high functioning student with an ASD who forced himself to vomit in order to have himself removed from the classroom which was causing him great anxiety.  This behaviour is often interpreted as “bad” when in fact from the student’s perspective, it is very rational.  In time, what is considered a normal environment for most students becomes torture for a student with an ASD and they will do whatever is necessary to stop it.  Any rational person would do the same thing.

-          Teachers and School Administration often inadvertently reward negative behavior of students with an ASD.  Thus increasing the negative behavior leading to student frustration, and at times, suspension.  Suspension is a consequence a student with an ASD might not have any ability to understand, thus leading to more complications for the student to receive a REAL education.  In addition, what is perceived by the teacher as a “punishment”, can actually be a “reward” for the autistic student because it removes him/her from the classroom.

Propose Alternative Methods of Delivery

-          The Department of Education needs to endorse having more than one Autism Consultant for the entire province.  One Autism Consultant is inadequate to serve a population of more than 1000 students.

-          Training of TA’s as ASW’s, and training of M&R teachers as CS’s through the College of Extended Learning: Autism Intervention Training.

Accountability Measures

-          The Department of Education fully endorse ABA, providing formal training to TA’s and M&R teachers.

-          Develop a legal and workable education tool to replace the SEP/IEP.

-          ABA was endorsed recently in the Department of Education’s Teaching Students with Autism Spectrum Disorder document.  However, the document is woefully inadequate on specifics of formal training and implementation of ABA methodologies.

-          ABA is endorsed by a wide variety of very credible institutions and research organizations.

-          Court cases have clearly outlined ABA as the only proven method for treating and teaching children with autism, and the child’s constitutional right to have it provided.

Auton, BC 2000

Deal, Tennessee 2001

Wynberg, Ontario 2005

Survey Results

Autism Society New Brunswick conducted a survey with parents of students with an ASD to get their views on the current system.  In the interest of brevity, we are not including the full results.  We can, however, summarize the views of parents in two words: frustration and despair.  The vast majority of parents, particularly those of low functioning ASD students, believe that the current inclusion policies are failing their children.  We will provide the details of the survey at your request.

Funding Model

One suggestion would be that the Province of New Brunswick acting through the Department of Education   ensure funding to ensure that TA’s are properly trained in ABA  and available to each student in the province that needs them, regardless of which school district they are located in. 

It should not be left to the individual school districts, and whatever funding model that is adopted should ensure this goal is met.

Final Comments

-          Until the Department of Education commits to ABA training of TA’s and M&R teachers, the outcome for quality education and more importantly a quality of life during the school years will continue to be bleak and discouraging.

-          Do not let students with an ASD currently in New Brunswick schools become a generation lost to bureaucratic inertia or lack of will.

We ask that the Department of Education formally train TA’s in ABA methodologies, who work with our autistic children.

Autism Researcher Bias and the Targeted Exclusion of Intellectually Disabled in the DSM-5 Autism Do-Over

Autism researcher bias exists and its effect, when the DSM-5 takes effect in 2013,  will further the redefinition of autism as social awkwardness and the exclusion from the autism spectrum of persons with severe intellectual disabilities.  

David Kupfer, M.D., chair of the DSM-5 Task Force,  has stated that "the proposed ASD criteria are backed by the scientific evidence". Dr. Kupfer was not addressing the exclusion of the persons with autism and severe intellectual disabilities when he made that statement.  He was responding to the criticisms that the new Autism Spectrum Disorder would target high functioning autistics for exclusion. Scientific evidence in respect of autism disorders is found  by autism researchers though and autism researchers are clearly biased  against inclusion of low functioning, intellectually disabled persons with autism in the their research studies.  The DSM-5 New Autism Spectrum Disorder, based on that same research, reflects the researchers' bias against inclusion of intellectually disabled persons and is intentionally designed as was confessed by Dr. Catherine Lord, to remove persons with classic autistic disorder and intellectual disability from future autism diagnoses.

I do not think the DSM-5  committee responsible for the New Autism Spectrum Disorder will yield to pressure to  revisit the new autism diagnostic criteria. I attended IMFAR 2012 in Toronto and specifically attended two presentations by Dr. Susan Swedo of the committee responsible for the new autism definition.  She was visibly upset over the criticisms received from those concerned with the possible exclusion of very high functioning persons from the autism spectrum but she dug in her heels. She did confirm, in response to my questions after the second presentation, that some intellectually disabled will not be diagnosed with autism under the DSM-5 definition who might have received an autism diagnosis under the DSM-IV.  If there is any change it will come on the high functioning end and will tend to include more high functioning autistic persons, the subjects of much interest by NYT reporter Amy Harmon and others in the Mainstream Media. At the same time there is no significant pressure on the DSM-5 committee members to reconsider the express exclusion of the intellectually disabled in mandatory criterion A of the DSM-5 Autism Spectrum Disorder.  

CDC autism expert Dr. Marshalynn Yeargin-Allsopp stated in an interview with the  Canadian Medical Association Journal that the vast majority of persons with classic autism, approximately 80%, also had intellectual disabilities prior to the DSM-IV addition of Aspergers which effectively watered that figure down to approximately 40%:

"Prior to the 1980s, only those exhibiting autism’s classic symptoms (communication and behavioural difficulties and a lack of social interaction) were considered affected. Those symptoms remain the foundation of “classic” autism.  But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the Centers

for Disease Control and Prevention.

For example, it now includes Asperger syndrome, where the sufferer is socially

impaired, but experiences typical language development. Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."


The DSM-IV effectively expanded the definition of what constituted autism and, in the process, reduced the presence of the intellectually disabled on the autism spectrum from vast majority status to minority status. Since then the Mainstream Media regularly does a feature on the accomplishments of Dr. Temple Grandin and other very talented high functioning persons with autism/Aspergers.  Michelle Dawson and Ari Ne'eman who function very well in complex and challenging legal, political and media proceedings command attention and help redefine autism from a disorder with significant daily living impairments to a different, superior way of thinking. Meanwhile those most severely affected by classic autism disorders, particularly the vast majority with intellectual disability, remain largely invisible,  marginalized by Neurodiversity identity ideology which disowns their presence on the autism spectrum and by media obsession with feel good stories including movies and television shows featuring brilliant characters with Aspergers.

The primary agent in the final push to remove those with intellectual disability from the autism spectrum is the bias of autism researchers.  Bias is certainly a factor in autism research as noted by High Functioning Autism expert and anti-ABA activist Dr. Laurent Mottron in his Nature commentary in which he paid lip service to the quaint notion of autism as a disability affecting some but then  displayed his own bias by redefining autism in terms of the autistic researchers who work with him:

"I am a researcher, clinician and lab director concentrating on the cognitive neuroscience of autism. Eight autistic people have been associated with my group: four research assistants, three students and one researcher. Their roles have not been limited to sharing their life experiences or performing mindless data entry. They are there because of their intellectual and personal qualities. I believe that they contribute to science because of their autism, not in spite of it. Everyone knows stories of autistics with extraordinary savant abilities, such as Stephen Wiltshire. None of my lab members is a savant. They are ‘ordinary’ autistics, many of whom, on average, outperform non-autistics in a range of tasks, including measures of intelligence." (Underlining and bold highlighting  added - HLD)


Mottron also noted autism researcher bias in his Nature commentary:

"Even researchers who study autism can display a negative bias against people

with the condition. For instance, researchers performing fMRI scans systematically report changes in the activation of some brain regions during a task as indicative of a deficit in the autistic group, rather than of their alternative, yet sometimes successful, brain organization."

Dr. Mottron's own bias is on ironic display in the above quote when he references fMRI scan result interpretation as indicative of autism researcher bias.  He fails to mention that such scan studies routinely exclude low functioning, severely autistic subjects because of the difficulties in managing the behaviors of such subjects during the examination process.  This bias against the low functioning, severely autistic would include the vast majority of persons with classic autism and intellectual disability.  Mottron, who has written many published journal articles on persons with High Functioning Autism and Aspergers, has demonstrated his own bias against those with autism and intellectual disability by arguing with flimsy, if any, evidence that intellectual disability does not exist in autism. 


A recent autism study employed lower functioning autistic subjects.  In A stable pattern of EEG spectral coherence distinguishes children with autism from neuro-typical controls – a large case control study, Frank H. Duffy and   Heidelise Als used classic autism subjects because of the tendency of autism studies to exclude them as reported in the study press release:

"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." 

Autism research has generally tended to exclude low functioning autistic participants as was acknowledged by  an article in the Financial Times about the DSM-5's new autism spectrum diagnostic criteria Dr Craig Erickson, chief, Christian Sarkine Autism Treatment Center, Indiana University School of Medicine noted the presence of  a high functioning autism bias in autism research:

"Erickson noted that there is often a bias in clinical trials, where high-functioning patients are typically enrolled as they are more readily able to tolerate routine procedures such as blood tests part of clinical trials. Further, it is easier to make improvements in less-impaired children, Elliott said, noting the Phase II Kuvan in autism trial included children with IQs in the 50-60 range as well as Asberger patients."

Dr. Catherine Lord of the DSM5 committee that has crafted the New Autism Spectrum Disorder has also noted the tendency of autism research to exclude those with multiple disabilities and moderate and severe intellectual disability in  Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""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". [underlining added - HLD]

The APA has stated in its form letter reply to those who submitted concerns to them about the new Autism Spectrum Disorder criteria that the new definition is based on existing research:

"The [DSM-5 Autism Spectrum Disorder] proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders."

Notwithstanding the known and acknowledged distortion of autism research because of researcher tendency to exclude, for reasons of convenience, autistic participants with intellectual disabilities the DSM-5 work group is relying on that same research to justify the intentional (as confessed by Dr. Catherine Lord and confirmed by Dr. Susan Swedo at IMFAR 2012) exclusion from future DSM-5 autism diagnoses of persons with intellectual disabilities. 

As the father of a severely autistic 16 year old son with "profound developmental delays" I do not have the luxury of excluding my son from the realities of haircuts in busy hair salons, dental and other medical procedures and countless other challenges of daily life. I have to deal with and face those realities in my son's best interests.

The conduct of autism researchers in excluding low functioning autistic participants with intellectual disabilities from autism research and, inevitably from the DSM-5 era of autism diagnoses, is not justified by their own professional requirements either.  An Italian study, instead of trying to cleave meatloaf at the joints by removing the intellectually disabled from the autism spectrum, took the  opposite approach and having found a close connection between ID and autism disorders recommended future research into that connection. In Autism and intellectual disability: a study of prevalence on a sample of the Italian population. La Malfa G, et al concluded  that their study:

 "confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID."

The DSM-5 team, like so many autism researchers on whose work they based their new Autism Spectrum Disorder, have chosen to ignore the recommendation from the Italian study and pretend that no relationship exists between ID and  autism disorders.  They have betrayed the most severely affected by autism disorders those with autism and intellectual disability.

Conor Enjoys Canada Day Weekend Despite Autism

We have had perfect Canada Day weekend weather here in Fredericton and Conor has been outside enjoying it .... for the most part.  Some may not see autism as a disorder.  Conor though is severely affected by his autistic disorder including his sensitivity to sounds.  Walking across the bridge with traffic noise can be disturbing for Conor as these pictures show.  Other than that though Conor took full advantage and enjoyed the great outdoor weather.

Happy Canada Day! Now Let's Start Addressing Canada's Autism Crisis

Happy Canada Day EVERYONE! 

Including Canadians With Autism Disorders!

I can not imagine living in any other country in the world.  As much as I love our great neighbors to the South, I would not want to live in any country except Canada. I do not pretend, however, that Canada is perfect, not at all. It is impossible for me as the father of a severely autistic son, now 16 years of age, to ignore the exclusion of autistic children and adults in Canada from coverage for treatment of their serious neurological disorders, their autism disorders, under our so called "universal" health care system.   

As much as I love my country I admire our American neighbors for the leadership they have shown in dealing realistically with autism disorders.  ABA was applied and developed in the US as an autism intervention by Dr. Lovaas and remains the only solidly evidence based effective intervention for autism disorders. ABA has been endorsed in a recent US federal court decision requiring Medicaid coverage of ABA for autism in Florida.  US federal government employees now have medical insurance coverage of ABA for autism. 

Meanwhile in Canada,  autistic persons remain excluded from Medicare coverage for ABA.  We held one sham, orchestrated, (ABA 4 autism advocates, including me, were excluded)  National Autism Symposium that produced no tangible results and no road map for future efforts to help Canada's autistic children, youth and adults. Canadian autistic children who are fortunate enough to receive ABA do so under a national patchwork of largely ineffective service delivery systems.  New Brunswick, once hailed as a leader in autism service delivery by US autism expert Dr. David Celiberti, is now regressing into "in house training" for early intervention and education assistants.  Living conditions for adults with autism are simple: those who are high functioning will be housed in a variety of locations including group homes with untrained staff, hospital wards and  rented hotel rooms.  Those who are severely autistic with intellectual disabilities will often live out their lives in psychiatric hospitals. 

In the US, where they are not asleep at the wheel, the CDC estimates that 1 in 88 have an autism spectrum disorder. It is now time for Canadians to wake up and start addressing our national autism crisis in an organized, concerted effort.  Let's start including Canada's autistic children and adults in our national agenda before the next Canada Day celebrations. 

I love you Canada. I hope you feel the same way about Canada's autistic children and adults ... and start showing it.