Conor Enjoys Fredericton's First Snow

Today we awoke to Fredericton's first real snow fall of the winter. It was fresh and cool on the walking trail.   Conor enjoyed the snow and fresh air in the back yard.

autism

Illinois Law Requires Health Insurers To Cover Autism Treatments

Illinois is poised to become a North American autism treatment leader by requiring insurers to provide coverage, up to $36,000, for autism treatments. CBS2Chicago reports that the Illinois legislation has passed and is awaiting the signature of Governor Rod Blagojevich who applauded the passage of the legislation and who fought for it over the past year.

Here in Canada we have a public health care system but autism treatment is not dealt with by our federal or provincial health departments. Our federal Health Ministers have provided no meaningful assistance or leadership on autism treatment and our provincial governments fund autism treatments, to different degrees, as social services not as medical treatments.

Provincial governments provided autism treatment as a social service to strengthen their positions before the Supreme Court of Canada in the Auton case where the SCC decided that ABA autism treatment was not medically necessary treatment, as defined by the provincial legislature, and for that reason no discrimination contrary to the Canadian Charter of Rights arose. The Court's decision was essentially a bow of deference to the policy making authority of legislatures.

New Brunswick was one of the provinces which adopted the social services characterization autism treatment as the Auton case made its way to the Supreme Court. Here the Department of Health had primary carriage of issues relating to autistic disorders and other autism spectrum disorders. On April 1, 2003 the Minister of Health announced some funding for autism programs in New Brunswick. Shortly thereafter the primary responsibility for autism "services" was transferred to the Department of Family and Community Services (now called the Department of Social Development) where it remains to this day.

Illinois and Governor Blagojevich deserve great credit for their honest and determined effort to provide autism treatment coverage for Illinois children with autism spectrum disorders. Autism treatment is a health and medical treatment not a social service. That autism reality, abandoned in Canada for legal strategic reasons is confirmed in this Illinois legislation

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Autism and the DSM-V in Public Life and Discussion

The DSM-IV-TR, the current version of the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, is currently undergoing revision and will ultimately be replaced by the DSM-V. The Report of the DSM-V Neurodevelopmental Disorders Work Group, Susan Swedo M.D., November 2008 lists various issues being examined by that group, many of which could have a dramatic impact on public understanding of what constitutes autism. I strongly encourage everyone with an interest in autism disorders to read this summary report.

Autism as a distinct disorder category began with the 1980 DSM-III, described initially as infantile autism and revised to autistic disorder in 1987. The DSM-IV revision added the "pervasive developmental disorders" which are commonly described today as the Autism Spectrum of Disorders. Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) were added to autistic disorder in this category.

The addition of these additional categories dramatically increased the numbers of children being diagnosed with "autism". A major controversy has ensued over whether the astonishing increase in autism diagnoses is due entirely to this expansion combined with greater social awareness as some believe. Others hold to the view that environmental causes or triggers, particularly vaccines, have contributed, in whole or in part, to the dramatic upswing in autism diagnoses.

Personally I think it is obvious that a substantial portion of the increase is attributable to the expansion of the diagnostic categories of autism in the DSM. But I do not think sufficient research has been done to conclude that the increases are due entirely to the definition changes. Even on the vaccine theory I have never accepted that either side of that debate has been made conclusively.

Another controversy generated by the expansion of the definitions of autism has arisen from the grouping together of persons with normal and even exceptional communication and functioning abilities with persons like my son who has limited communication and functioning ability. From this grouping has arisen a group of high functioning, anti-cure, anti-treatment, autistic persons with excellent communication skills and with an aggressive social/political agenda. Some have appeared before courts, political bodies, in the mainstream media and on the internet to wage political warfare against parents seeking to help their own, generally more severely disabled, autistic children.

The Report states that there are several questions still under discussion for Autism Spectrum Disorders:

1) How to describe the “spectrum” of disorders now known as ASD (e.g., how many domains will define the disorder);

2) What is the specificity of repetitive behaviors in ASD and how might they be better defined;

3) Whether Childhood Disintegrative Disorder (CDD) is a unique and separate disorder, and if so, what are its defining characteristics;

4) Whether autism is a life-long diagnosis or whether it is possible to recover/remit to the point where the diagnosis is no longer applicable;

5) Whether Asperger’s disorder is the same as “high-functioning autism”;

6) How the DSM-V can alert clinicians to common medical comorbidities (including genetic disorders, epilepsy/EEG abnormalities and sleep, or GI problems) and potential biomarkers;

7) How to include consideration of severity and impairment in diagnosis (currently defined as “qualitative impairments”) and how to integrate these with the overall structure of DSM-V; and

8) How/where to discuss cultural influences on diagnosis (e.g., Korean use of reactive attachment disorder rather than ASD to avoid family stigmatization).

These are all important issues and, like most autism discussions, will undoubtedly generate considerable controversy when the DSM-V is finally released.

autism

"MARBLES" - Rare Study Examines Environmental Factors In Autism Disorders

MARBLES, Markers of Autism Risk in Babies - Learning Early Signs, is a rarity. The study being conducted by UC Davis researcher Irva Hertz-Picciotto is looking at possible environmental triggers for autism.

The Autism Knowledge Revolution advances almost daily with announcements of genetic studies and breakthroughs in understanding genetic causes or bases for autism spectrum disorders. But there seem to be fewer studies focusing on possible environmental factors.

The News10/KXTV report quotes Ms. Hertz-Picciotto:

"Autism is very clearly not a single cause type of condition. It's got to be multiple factors," said Hertz-Picciotto, who hopes her study will reveal environmental factors that combined with genetics can trigger autism.

"We expect to find a number of different exposures that affect neurodevelopment and may be related to autism mildly, small increments of risk, for each exposure, but there may be multiple exposures," said Hertz-Picciotto.

To date the study involves 100 women and 59 babies who are being followed for a three year period. Blood samples will be withdrawn at regular periods.

autism

Late Autumn, Late Afternoon

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Time To Resume The Struggle, Canada Still Needs A Real National Autism Strategy

The general election in Canada has come and gone. And Canada's National Autism Crisis remains.

Prime Minister Stephen Harper had no qualms about spending hundreds of millions of dollars on an unnecessary election. But still he can not even spend five cents on actually helping autistic children and adults in Canada. Prime Minister Stephen Harper has done nothing to help autistic children receive evidence based treatment in Canada. Nothing of substance will be done to help autistic children in Canada while Stephen Harper is Prime Minister.

There were many people who fought hard to raise the profile of autism and Canada's autism crisis during this election. I am not offering any names because I do not want to offend anyone by accidental omission. From BC to Nova Scotia the fight was waged for a real National Autism Strategy. The ultimate objective was not achieved .... this time. But the fight will continue for a real National Autism Strategy.

We know that autistic children across Canada deserve the opportunity for a better life. They deserve to receive Applied Behavioral Analysis and any other evidence based treatment that might be developed in future. They need treatment now. They do not need sham National Autism Symposiums which exclude parent advocates and provide watered down versions of what more credible American agencies like the American Academy of Pediatrics, the New York State Department of Health, the MADSEC Autism Task Force and the Office of the US Surgeon General have been telling us for many years.

We have to continue the fight for a National Autism Strategy. We have to reboot, recalibrate, recharge and resume the struggle and we have to start right now!

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Autism and Nicotine Addiction - The Neurexin Connection

Science Daily reports on findings presented by Rene Anand, associate professor of pharmacology in Ohio State University’s College of Medicine and principal investigator of research presented today at the at the Society for Neuroscience meeting in Washington, D.C. The findings identified a relationship between two proteins in the brain that have links to both nicotine addiction and autism suggesting a possible drug therapy to alleviate some symptoms of autism.

The neurexin-1 gene produces a protein which lures another protein "a specific type of nicotinic acetylcholine receptor, to the synapses, where the receptor then has a role in helping neurons communicate signals among themselves and to the rest of the body." Persons with autism have previously been found to have a shortage of nicotinic receptors in their brains while people who are addicted to nicotine have too many.

There is some speculation that drugs known as cholinergic agents, used to counter nicotine addiction, could be adjusted for use in autistic children in an effort to increase the level of neurexin-1 beta protein in their brains. It is hoped that more neurexin would alleviate some of the symptoms of autism by encouraging the presence of more nicotinic acetylcholine receptors and number of other proteins important for the proper formation and maturation of synapses.

These cholinergic agents already exist so presumably they will be adjusted for autism as described and their effectiveness tested in the near future.

The Autism Knowledge Revolution continues.

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AutismPro Still Promoting But Where Oh Where Is The Evidence It Works?

I have commented on several occasions on this site about AutismPro, the Internet based autism "resource" usually after reading the latest PR release, about what an innovative product it is or what an excellent business opportunity it is. This past week the Daily Gleaner featured AutismPro, again, in its nbbusinessjournal section.

Virtual Experts Clinics, which developed the AutismPro product, has stated in the past that it uses several different autism "interventions" which range from interventions that are "somewhat" ABA based, a well researched effective evidence based autism intervention, to some interventions with no evidence basis of their effectiveness. Although respected autism expert Dr. Jeannette Holden, an advisor to VEC, had indicated two years ago that trial studies of the product were being run the results of those studies have not, that I have seen, been made public.

There is a need for autism support services in New Brunswick schools but those services should not be based on unproven Internet products. Premier Graham committed to funding training for 100 Teacher Aides a year for 4 years at the UNB-CEL Autism Intervention Training Program. The second of two classes of that 4 year commitment is currently proceeding and hopefully the full 4 year commitment will be honored. UNB-CEL Autism Intervention Training Program provides the quality and integrity to ensure that autistic children in New Brunswick schools, including Conor, my 12 year old son with Autistic Disorder, assessed with profound developmental delays, receives a real education.

There is much pressure on Education Minister Lamrock to abandon Premier Graham's commitment. Some of that pressure comes from CUPE Local 2745 and its President Sandy Harding who insist that unqualified, untrained aides with greater seniority have the right to work with autistic students in place of the UNB-CEL Autism trained aides.

Some of that pressure also comes from VEC Inc which has worked with some senior education department officials to promote AutismPro as an internet based training tool which would have permitted the Department of Education to train teacher aides in house, with no entrance requirements for the autism training, work at your own pace training requirements and no completion exams. The in-house training would have been overseen on a project basis by an about to retire Director of Student Services who would have been able to , "double dip", to draw a pension while earning a salary as the project manager.

Hopefully Premier Shawn Graham will continue to honor his commitment to train 100 teacher aides per year for four years at the UNB-CEL Autism Intervention Training Program. The UNB-CEL AIT Program has been subjected to external review and received a very positive evaluation by Dr. Eric Larsson of the Lovaas Institute:


"The current AITP is a remarkable and thorough program that has been developed to an exceptional level of quality in the context of limited resources. The province-wide model is one that many other provinces should adopt, as it carries with it many cost-effective features. The curriculum content requires little modification".

Hopefully the results of studies assessing the effectiveness of AutismPro in educating autistic children will be publicly disclosed at some point. And hopefully those studies will have been conducted using ethical, objective and professional standards. We know that VEC Inc is effective at Promoting AutismPro but is AutismPro an effective tool for educating autistic children?

autism

Australian Autism Advocate Nominated for Local Hero Award

The Wynnum Herald reports that Dr. James Morton, a clinical haematologist at South Brisbane’s Mater Hospital, has been nominated for a Local Hero Award for his work as an autism advocate. Dr. Morton helped create a leading treatment program in Australia for autistic children, the Autism Early Intervention Outcomes Unit (AEIOU) after his autistic son's early intervention program closed a year after his autism diagnosis at age 2.

autism

Conor and the Clock

I mentioned in an earlier post, Conor's Sense of Humor - Eight Zero Zero and Zero Kisses, that Conor now is used to going to bed at eight pm or eight zero zero as he likes to say. He pulls up a chair, sits and watches the clock inch toward 8:00 every night. In this picture it is approximately 7:47 and Conor is focused intently on the clock. It is important to keep him busy between 6 and 7:45 to make sure he does not sit there for two hours waiting.

Tonight we went for an after supper walk. The rain had stopped and Conor and Dad headed out. Conor decided he wanted a "bridge walk" a hefty walk of about two hours at a brisk pace. We made it about 40 minutes when the rain started again so we ducked into a Jean Coutu pharmacy and called a taxi to get home. Conor had a heavy chest cold this weekend and I did not want him getting soaked.

While in the pharmacy waiting for the taxi, Conor managed to convince Dad of the need for a "Conor treat", in this case a Coffee Crisp chocolate bar. The taxi arrived shortly afterwards and we headed home where Conor, after some home diversions, took up his place at the clock to wait for bed time - eight zero zero.

autism

Is "New" Autism Theory Much Ado About Nothing?

I have read the New York Times article In a Novel Theory of Mental Disorders, Parents’ Genes Are in Competition about the new theory articulated by Dr Crespi and Dr Badcock but I have to confess that I do not see what all the fuss is about. From what this humble layman can understood the "theory" is really little more than speculation, a simple reorganization of how we categorize or arrange various discrete disorders. It does not appear to be based on any novel research, evidence or observations.

I am not sure if it is properly called a theory but the NYT summarizes it as follows:

Their idea is, in broad outline, straightforward. Dr. Crespi and Dr. Badcock propose that an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways. A strong bias toward the father pushes a developing brain along the autistic spectrum, toward a fascination with objects, patterns, mechanical systems, at the expense of social development. A bias toward the mother moves the growing brain along what the researchers call the psychotic spectrum, toward hypersensitivity to mood, their own and others’. This, according to the theory, increases a child’s risk of developing schizophrenia later on, as well as mood problems like bipolar disorder and depression.

In short: autism and schizophrenia represent opposite ends of a spectrum that includes most, if not all, psychiatric and developmental brain disorders. The theory has no use for psychiatry’s many separate categories for disorders, and it would give genetic findings an entirely new dimension.

What is meant by the NYT 's expressions "tug of war" and "bias"? How do these events occur? And why does the theory have no use for psychiatry's many separate categories for disorders? If persons now described as having schizophrenia, bi-polar disorder or autism consistently exhibit different behaviors and different ways of thinking or understanding the world why should the categories be disregarded?

One of the authors of the theory, Dr. Crespi, states that the implications of their theory are huge.

This humble father of a 12 year old boy with Autistic Disorder, and profound developmental delays, is not so sure.

autism

An Evening With National Chief Phil Fontaine Fundraiser for Mahsos School

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Hi Conor

Conor is diagnosed with Autistic Disorder, with profound developmental delays. In school he was overwhelmed and came home with self inflicted bite marks on his hands and wrists. At our request he was removed from the mainstream classroom and his education in a separate room began. The bite marks were no longer present and he began to actually like school. We very much appreciate the accommodation of Conor's autism disability by educators in our schools and district.

This "segregation" that we requested as his parents has been of great benefit to him in many areas including his own health and his learning. And, despite the concerns of the total inclusion advocates from the New Brunswick Association for Community Living and the New Brunswick Human Rights Commission (the current NBHRC Chair is a very prominent, decades long advocate for New Brunswick's total inclusion model) it has not harmed, and may in fact have helped, Conor socially.

Today, in grade 7 his primary instruction area is still a small separate room. But the education assistant who works with Conor takes him into the gym and other common areas of the school for specific activities and for limited periods of time. The Youtube videos on the sidebar of this site include two short clips of Conor in the middle school gym. Although no other children are visible there were many children in the gym that day when I video'd some of Conor's gym activities while being careful not to capture other children in the videos.

When I take Conor to school each day there is a boy who often speaks directly to Conor and asks me questions about him. Last week as I approached the entrance doors to the school with Conor a girl approached and walked towards the school beside him, saying "Hi Conor" playfully trying to tickle him and engage him in small talk.

Conor's experience at middle school is consistent with his experience at grade school. Having Conor in the local neighborhood schools but not in the mainstream classroom all day has not prevented other children in the schools from getting to know him or wanting to get to know him.

I don't know if the children would be as nice to Conor if he was in their classroom all day, overwhelmed by the noise, sights and activity and suffering periodic meltdowns.

Now they see Conor when it is best for him. His periods of public interaction with other children are designed to succeed. A simple principle of ABA ... and common sense ... that is often ignored by the ideology of the total inclusion advocates.

autism

Economic Crisis Takes Autistic Boy's ABA Therapy

The Seattle Post-Intelligencer tells a heart wrenching story of the impact of the current economic downturn on the family of real estate broker Robert Ott. The family savings have been depleted, their line of credit suspended and 6 year old autistic son Aaron has lost his behavioral therapy. With therapy Aaron had progressed from squeaking a single tone to a 50 word vocabulary. His therapist used to visit Aaron's school to help solve behavior problems but now Aaron is on his own:

Aaron started coming home from first grade holding reports with orange circles on them -- indications from his teacher that he'd acted out that day.

In the past, Aaron's former behavioral therapist would visit his classroom to help resolve disruptive behaviors often associated with autism.

"Now when something goes wrong at school, it keeps going wrong," Ott said.

It is tough reading this story but I also have to wonder what the schools in the Seattle area provide for autistic students like Aaron. Does he have an autism trained Teacher Assistant working with him? Does he sit in the regular classroom all day with a 50 word vocabulary? Are any supports provided or accommodations made for him in school?

autism

A Break From The Rain

With three days of rainy weather Conor was getting a bit antsy indoors. Today we got a break in the rain and a chance to get outdoors for some fresh air and fun. The water was high and fast in local streams.

autism