Wesley Romey's Story: Why Canada Needs Medicare for Autism Now!


Medicare for Autism Now! has released the film Medicare's Orphans second trailer.  In this trailer Wesley Romey and his mother Laurie Guerra tell Wesley's story.  It is the story of a boy with serious autism challenges including lack of speech and extended meltdowns who has benefited from receiving ABA therapy.   Ms Guerra candidly points out that she had the resources to be able to afford ABA treatment for Wesley where many parents can not.  Wesley's life has changed for the better because of ABA.  Canada, which likes to talk about universal medicare, does not in fact have universal medicare when an effective  treatment for autism is denied to an entire class of people with autism disorders.  With  Medicare coverage of ABA for autism treatment many other young autistic Canadians could be receiving the life enhancing treatment. The film Medicare's Orphans is scheduled for release in September.



Autism and Cancer Research and Understanding Undergo Similar Paradigm Shifts

Autism research has been marked by an obsession with genetic focused research at the expense of research examining potential environmental causes or triggers of autism.  The frozen "it's gotta be genetic" mindset  of the autism research establishment identified years ago by Teresa Binstock might finally be shattered by recent efforts including the California Autism Twins Study (CATS). It is interesting too to learn that cancer research has also been slowed by a similar obsession with genetic research and ignoring of possible environmental factors.

In Cancer: Belatedly, Environmental Causes Get their Due  Justine Chow and Feifei Li, Research Assistants with the Environmental Working Group, comment on a  recent Duke University study which highlights a dramatic change in thinking among cancer specialists and practicing oncologists who now increasingly see pollution and other environmental factors as causes of cancer:

"For decades, most cancer researchers focused on genetics, diet, smoking and aging populations as the chief culprits, all but dismissing other environmental factors. As recently as 2003, a World Health Organization report featured the conventional wisdom that only 1-to-4 percent of all cancers were due to pollution.

More cancer specialists and oncologists see environmental link

A new report by Duke University researchers highlights the dramatic shift since then among cancer specialists and practicing oncologists. In a paper being published in the September issue of the Journal of Oncology Practice, the Duke team reports on a survey of young oncologists it conducted at the 2010 Australia and Asia Pacific Clinical Oncology Research and Development Workshop.

The Duke researchers found that these specialists from low- to middle-income countries consider pollution and other environmental factors one of the three top reasons for the growing burden of cancer in their countries. Close to a third (32 percent) called environmental factors important contributors, contradicting the traditional reserve that cancer researchers and physicians felt about attributing cancer to environmental causes.

Even though air, water and soil pollution became a major concern during the 20th century, only recently has compelling evidence mounted that carcinogenic chemicals are taking a significant toll on human health. Case studies of water and soil contamination are finding cancer clusters and population-wide epidemiological trends that link pollution to increases in the overall cancer burden, especially in impoverished regions where exposures are often higher than in wealthier nations."

It is likely that the cancer and practicing oncologist world, like the autism world,  will have their own Oracles who will be unable to thaw out their rigid mind sets and consider the interaction of genetics and environment as a more informed model for conducting research and understanding human health issues.  Still it is encouraging to see that the paradigm shift taking place in the world of autism research,  a shift which replaces the purely genetic model with the gene environment model may be reinforced by a similar shift taking place in other areas of human health.

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With a Perfect Storm Approaching for NB Autistic Students Some Tips for Obtaining an Autism Trained Education Assistant

If your child with autism is moving into the school system you may want a trained TA to continue the progress achieved in the pre-school years. If your autistic child is already in the school system and you believe he/she would benefit from the help of an autism trained TA these tips might also help. No matter where you are in New Brunswick whether in Saint John, Moncton, Fredericton, Bathurst Miramichi or Edmundston do not hestitate to email me at AutismRealityNB@gmail.com if you have a question.

I  have been an active member of autism advocacy  organizations in New Brunswick for over a dozen years. I say advocacy because the focus of   efforts I have been involved with have been to obtain effective, evidence based help for children and adults with autism.  I have received no salary or income of any kind for my autism advocacy and I have never sought a pat on the head from government officials (not that they would have wanted to anyway) Mostly I am the father of two boys one of whom is severely  autistic. Like everyone else, I am continually advocating  for a trained Education Assistant to work with my autistic son.  

I once again offer an article I first published in 2006 in the Autism Society New Brunswick newsletter to give parents some ideas to consider in advocating for an Education Assistant for their child. It is offered at a time when I believe it will be increasingly difficult to obtain a quality autism trained Education Assistant to work with a New Brunswick autistic student.

In Conor's case his mother and I have sought Education Assistants with the UNB-CEL Autism Intervention Training program.  This New Brunswick developed program has received recognition from international autism experts like Dr. David Celiberti and Dr. Eric Larsson. Between 500 and 600 TA's as they were then called, were trained at UNB-CEL before the Department of Education in order to reduce costs and increase department control over training of assistants, abandoned the program in favor of a watered down version taught in house without the quality and integrity assurances provided by the UNB-CEL training.  

Whatever you hope for in the Education Assistant working with your child it will be more difficult now with cuts being made this year in the numbers of Education Assistants.  Unfortunately the  new collective agreement entered into between CUPE Local 2745 and the Province of New Brunswick continues the promotion of adult interests, over the interests of children with autism and other disabilities requiring accommodation.  The situation is worse now with the Alward government and its unofficial Education Minister Gordon Porter and his unofficial branch of the Education Department ... the New Brunswick Association for Community Living. 

Despite doing good work in many areas, and making many  positive contributions, Mr. Porter and NBACL have for decades  promoted a mainstream classroom inclusion for all model of inclusive education and have resisted accommodations sought by NB autism advocates.  They have at times resisted with open hostility efforts by autism advocates seeking learning accommodation in separate quieter areas of local schools from autism trained TA's.  Their ideas have changed or modernized very little during the past decades.   

There is currently a review of New Brunswick's inclusive education system being conducted by Mr. Porter and those who have participated in NBACL.  The review will undoubtedly result in a report which confirms their decades old ideology, cuts costs to the Department of Education, and protects the interests of untrained  Education Assistants over the interests of children with autism.  There will probably be fewer and fewer Education Assistants with quality autism training. They will increasingly be pressured to work in mainstream classrooms which will not necessarily be appropriate for some students with autism disorders. Mainstream classroom inclusion will make it less likely a student with autism will receive an EA  with proper autism training and the individual instruction required in some instances. 

These factors will make it very easy for local education authorities to justify, even glorify, cutting proper training and retention of autism trained Education Assistants. There is a perfect storm brewing and parents will have to fight even  harder to ensure their autistic children receive the education services they require. 

Following are some tips I originally posted in an Autism Society New Brunswick newsletter in 2006. They are my advice as a parent (not as legal advice), and as general information.  For those seeking help in obtaining an Education Assistant you may want to give them some consideration. You may also want to seek     assistance from other parents with an autism advocacy background. I did. They were a big help in getting an   Education Assistant  for our  son.

1. Document your child’s condition and school requirements. If your child is diagnosed with an autism spectrum disorder make sure that the school has a copy of the diagnosis. This may seem obvious but in some cases the school and district have been able to point out that they were unaware of any actual diagnosis of autism disorder.

2. Medical, Psychological or Therapeutic Assessments – If you think your child needs a Teacher's Assistant to learn in the school environment you should ask any pediatrician, psychologist, occupational therapist, speech language therapist or behavioural interventionist who is working with your child if they agree and would provide a written recommendation for a TA and present their recommendations to the school.

3. Be a Parent Advocate – Most parents know their autistic child better than most professionals. Do not be afraid to speak up – politely – but without fear - to express your view of what your child requires.

4. Autism Advocates – If you know an autism advocate or fellow parent of an autistic child who would be willing to attend a meeting with the school you should bring them along. They can provide you with moral support and confirmation of your experiences as a parent in describing what your child requires.

5. Safety – For many autistic children a TA is a must for safety reasons alone and this must be stressed if it is true for your child. An autistic child may not appreciate the many dangers posed by school, playground and nearby streets.

6. Individual Learning Method – If your child requires an individual based learning method using Applied Behavioural Analysis (ABA) techniques, or other individual based instructions, emphasize this with the school. For ABA in particular there is a great deal of professional literature about the need for one to one instruction for autistic children.

7. IEP or SEP – If the school or district refuse a TA for your child do not sign off on the IEP/SEP for your child unless you agree with that decision. Or if you do sign put a note beside your signature stating that you still require a TA for your child. Otherwise the school and district will argue that you agreed that a TA was not necessary.

8. Appeal – If a TA is denied for your child be ready to appeal right away under the Education Act. The School should have informational pamphlets available and forms explaining the appeal process to you. You might also want to consider hiring a lawyer to work with you on the appeal process.

Conclusion – Preparation, pressure and persistence are all required to obtain and keep a TA for your autistic child. It is a long tough fight and it is one that almost all of us have to go through to one extent or another. Do not overreact emotionally or unduly antagonize school officials. You need their help and most want to help. Getting overheated gives an excuse to the few who do not want to help to refuse what you are looking for. Stay calm and persist.


Harold L Doherty

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Terrific Autism News: Missing Severely Autistic Man Found Safe in Toronto


A  29 year old Toronto man with Autism has been found safe and sound. 680 Toronto News All News Radio reports that Gyafi Payne is described as having the "mental capacity of a five year old". He had gone missing around 7:30 pm Saturday.  Apparently he followed a local river to a golf course where he spent the night and was found the next day after a citizen at the golf course spotted him and called police. He was taken to hospital to be checked out and is reported to be in good shape.

Autism reality for the approximately 80% of persons with DSM-IV Autistic Disorder and intellectual disability is not necessarily a  joy for those persons and their families.  Stories of missing autistic persons do not always have a happy ending. As the father of a 15 year old severely autistic boy who went missing several years ago  (and was found safe and sound thanks to a helpful citizen and local police)  I am always happy, very happy, to read stories that end with a missing autistic person being found safe and sound. 

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Medicare's Orphans Trailer 1: The Hudson Family Sacrifice for their Child with Autism



This video is the first trailer for Medicare's Orphans by Medicare for Autism Now! which will examine Canada's shameful exclusion of autism treatment from Medicare coverage and the consequences for autistic children and their families. It provides a brief overview of the sacrifices made by the Hudson family, of the greater Toronto area,  to help their autistic child live the fullest, most independent life possible, sacrifices made all the larger by Canada's large scale neglect of autistic children and their need for effective, evidence based treatment.

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DSM-5 Autism Spectrum Disorder: 3 Domains Become 2 and Exclude Intellectually Disabled


In the DSM-5 the new Autism Spectrum Disorder will, for the most part focus on those with Aspergers' and high functioing autism. The vast majority of those with Autistic Disorder who are also intellectually disabled will be excluded. This is clear from the wording used in the proposed new Autism Spectrum Disorder and in the wording of the new Intellectual Developmental Disorder.  That interpretation is also confirmed by the official rationale for the new ASD.

The new Autism Spectrum Disorder, as I have previously written, is misnamed. It would be much more accurately described as New Asperger's Spectrum Disorder.  The new version, which will be rubber stamped, on final review by the APA DSM-5 work groups, will exclude persons with intellectual disability as the current DSM-IV Asperger's criteria does and will remove language delay and general communication impairment also making the ASD consistent with DSM-IV Asperger's criteria.  In addition the DSM-5 ASD criteria make it clear that although the New ASD must be  present from infancy or early childhood it may not be detected until later because of minimal social demands and support from parents or caregivers in early years. This consideration helps those on the milder end of the current autism spectrum.  

As an example my son who is severely affected by his Autistic Disorder and profound developmental delays was diagnosed at age 2 several months after we had begun to seek medical attention for his lack of development.  We knew nothing about autism but his lack of development was apparent and disconcerting. By contrast the media is full of stories of very high functioning persons, some of whom are now quite famous self appointed spokespersons on behalf of all persons with autism who were diagnosed as teens or adults. The  "may not be detected until later" qualifier helps ensure that the New ASD captures those with Asperger's and High Functioning Autism.

I have previously noted that the criteria for the New ASD also excludes those with intellectual disabilities. It does so  by:

1. Establishing 4 mandatory criteria each of which MUST be met before ASD will be diagnosed:


2. Excluding fulfillment of mandatory criterion A where that criterion can be accounted for by general developmental delay:


If a child has general deficits in communication it seems obvious that the general communication deficit will include social communication deficit.  The DSM-5's new Intellectual Developmental Disorder confirms this assertion in mandatory Criterion B which specifically states that deficits in general mental ability impair functioning in various areas including communication and social participation:


The  DSM-5's New Autism Spectrum Disorder rationale also confirms the exclusionary effect of the new Autism Spectrum Disorded Mandatory Criterion A by explaining why 3 domains will be collapsed into 2:


The explanation does continue on but the first example highlights why the reduction from 3 domains to 2 confirms that DSM-5 ASD mandatory Criterion A will exclude the intellectually disabled. As the DSM-5 description of Intellectual Developmental Disorder states the deficits in general mental abilities will impair functioning by limiting and restricting participation and performance in daily life activities such as communication and social participation.  The rationale offered for the new ASD meanwhile states the obvious:  deficits in communication and social behaviors are inseparable. 

When a person suffers from general mental deficits sufficient to meet an Intellectual Developmental Disorder diagnosis he/she will suffer impairment in communication and social interaction.  They are inseparable.  In any instance where a persons meets the IDD criteria they will not meet criterion A of the New ASD because their  persistent deficits in social communication and social interaction will be accounted for by general developmental delay.  

The description  of the DSM-5's new Autism Spectrum Disorder's mandatory Criterion A and the description of the new Intellectual Developmental Disorder combine to exclude from an Autism Spectrum Disorder diagnosis those who are intellectually disabled.  That interpretation is confirmed both by common sense and by the DSM-5 rationale for the new ASD.  3 domains become 2.  Deficits in communication and social behaviors are inseparable.  Those with IDD will suffer deficits in communication and social behavior and will be accounted for by their IDD diagnosis thus excluding them from an ASD diagnosis. 

In the brave new world of the DSM-5, as in the mainstream media, as in Hollywood, as in autism research generally, the Intellectually Disabled will be excluded from the autism spectrum. 

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High Functioning Autism fMRI Brain Scan Study Misrepresented to the Public



"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]


Yet another fMRI brain scan study, The neural basis of deictic shifting in linguistic perspective-taking in high-functioning autism,  has been published in which Low Functioning, Intellectually Disabled autistic subjects are, by design, excluded  in favor of subjects with High Functioning Autism. This study published in the journal "Brain" by researchers Marcel Just, Akiki Mizuno and their collaborators at CMU's Center for Cognitive Brain Imaging (CCBI) and described in a PR Newswire Release found that errors in choosing a self-referring pronoun (eg. "you" instead of "I") "reflect a disordered neural representation of the self, a function processed by at least two brain areas — one frontal and one posterior". 

As evidenced by the above quote from autism expert Catherine Lord low subjects with low functioning autism, which would include the 80% or persons with Autistic Disorder (DSM-IV) and intellectual disability, are often excluded from autism research.  That exclusion of low functioning, intellectually disabled subjects from  recent  fMRI "autism" brain scan  studies has been even more obvious.  

The Carnegie Mellon researchers should be commended for describing their conclusions, as their study title expressly states,  in terms of High Functioning Autism given that their study subjects were all high functioning autistic persons.   Unfortunately the press release, which identifies Carnegie Mellon as the source of its information,  is not as meticulous and generalizes the study to the entire autism spectrum  in its title and content, including quote from lead research Marcel Joust:

New CMU Brain Imaging Research Reveals Why Autistic Individuals Confuse Pronouns


...


The results revealed a significantly diminished synchronization in autism between a frontal area (the right anterior insula) and a posterior area (precuneus) during pronoun use in the autism group. The participants with autism also were slower and less accurate in their behavioral processing of the pronouns. In particular, the synchronization was lower in autistic participants' brains between the right anterior insula and precuneus when answering a question that contained the pronoun "you," querying something about the participant's view.


"Shifting from one pronoun to another, depending on who the speaker is, constitutes a challenge not just for children with autism but also for adults with high-functioning autism, particularly when referring to one's self," Just said. "The functional collaboration of two brain areas may play a critical role for perspective shifting by supporting an attention shift between oneself and others.


"Pronoun reversals also characterize an atypical understanding of the social world in autism. The ability to flexibly shift viewpoints is vital to social communication, so the autistic impairment affects not just language but social communication," Just added.


...


Ongoing research at the CCBI is assessing the white matter in detail, measuring its integrity and topology, trying to pinpoint the difference in the autistic brain's networks.


"This new understanding of what causes pronoun confusion in autism helps make sense of the larger problems of autism as well as the idiosyncrasies," Just said. "Moreover, it points to new types of therapies that may help rehab the white matter in autism."

Presenting the results of a study of High Functioning Autism subjects as representing all persons with autism, including the low functioning, intellectually disabled excluded from the study is  misrepresentation. It helps promote ignorance, both in the general public about the many intellectually disabled persons with low functioning autistic disorder identified by CDC autism expert Dr. Marshalynn Yeargin-Allsopp as autistic disorder's "vast majority". 

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