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.

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. 

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?

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-typical controls – 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: http://vectorblog.org. 

CONTACT: 

Meghan Weber 

Boston Children's Hospital 

617-919-3110 

meghan.weber@childrens.harvard.edu 

SOURCE Boston Children's Hospital 

Back to top 

RELATED LINKS 

http://www.childrenshospital.org/

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.

 

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.