Nice To See Autistic Twin Sons of Toronto Family Receiving Autism Treatment In New Brunswick

PHOTO BY MARC GRANDMAISON / THE CANADIAN PRESS

The headline of the Toronto Star article Toronto family chases autism treatment across the country  doesn't mention the province to which the family in the Toronto Star article seeking early autism treatment for their autistic twin sons moved  - New Brunswick. Nor does the article itself delve into how the province usually mentioned as a financial disaster could have become a Canadian leader in early autism treatment as it was described by David Celiberti, Ph.D., BCBA-D, President of  the Association for Science in Autism Treatment in an October 23, 2010 commentary "ASAT Responds to Canadian CBC's N.B. Can Be a Leader in Autism Services" and again in his  interview with Dr. Paul McDonnell in the 2014 ASAT summer newsletter.  The essence of the Association of Science in Autism Treatment's commentary was that NB was already a leader; one whose autism service model was worthy of consideration by other Canadian jurisdictions. 

So how ... and why .... did New Brunswick develop an early intervention model worthy of consideration by other Canadian provinces seeking to provide early autism treatment to the autistic children of their province?  Without going over it again in detail intense parent advocacy focused specifically on request for  an early autism intervention prompted the NB government of day to to put out tenders for agencies to provide early autism treatment.  That call was answered successfully by Paul McDonnell and UNB-CEL. who developed the UNB-CEL autism training program in both French and English.

We have previously heard unconfirmed rumors of families in national organizations seeking relocation to NB so their autistic children could receive treatment. It felt good for this autism parent who was part of that very focused, committed parent advocacy team that prompted development of the made in NB autism program  to see the be benefits of the program being received by the children of the Toronto family in the Toronto Star article. 

Toronto Star Repeats Outdated 100% Genetic View of Autism Causation

The Toronto Star's Heather Mallick, to her credit, writes in Mallick: The autism enigma — beauty and silence about some of the realities and misconceptions about autism. Ms Mallick and the Toronto Star point out that autism is not as pretty as it appears to some, that at the more severe end of the autism spectrum are some people who, without intensive behavioral therapy,  can not control their actions and will engage in self injurious behavior like hand biting. This type of candid, honest commentary about autism disorders is rare in the mainstream media which tends to focus on promoting high functioning autistic success stories.

In the course of her comments though Heather Mallick repeats an old, and increasingly outdated, view of autism causation ... that autism is essentially 100% genetic:

"No one knows the cause. Some say pollutants or multiple vaccinations in infancy (now discredited with the disgrace of British researcher Andrew Wakefield) but genetics will out. That’s because autism is inherited, a fact that causes panic and grief among parents who blame themselves yet are without fault, unless they continue to have children, some of whom will be autistic. There is no amnio test. It’s a roll of the dice." [Underlining added - HLD]

The opinion that autism is 100% genetic is no longer the dominant view about autism causation.  That opinion has been based largely on the fact that autism research funding had been directed almost overwhelmingly towards genetic based autism research.  That view was adopted even though, as stated several times by Professor Simon Baron-Cohen, in cases where an identical twin has autism the other twin does not always have autism pointing to a gene environment interaction as the bases for autism disorders. Many years later genetic autism research has failed, totally failed to find a single genetic basis for autism disorders.  The emerging view is that autism in fact results from gene environment interaction with much research to be done on the environmental side of that equation as stated on  the IACC website:

"As with many complex disorders, [autism] causation is generally thought to involve some forms of genetic risk interacting with some forms of non-genetic environmental exposure. ... In addition, a number of other environmental factors are being explored through research because they are known or suspected to influence early development of the brain and nervous system. Recent studies suggest factors such as parental age, exposure to infections, toxins, and other biological agents may confer environmental risk. ... Progress in identifying environmental factors which increase autism risk has been made recently (Eskenazi et al., 2007; Palmer et al., 2006; Palmer, Blanchard,; Wood, 2009; Rauh et al., 2006; Roberts et al., 2007; Windham et al., 2006), although this area of research has received less scientific attention and far fewer research dollars than genetic risk factors"[Underlining added - HLD]      - United States IACC (Interagency Autism Coordinating Committee)

The causes of autism disorders are not known.  There is little dispute that genetic factors play a significant role. There is also an increasing awareness that environment plays a role and that autism results from gene environment interaction.  This understanding should be made known to mainstream media institutions throughout Canada and the United States.

That point aside, however, kudos to Heather Mallick and the Toronto Star for presenting autism honestly as what it is, a disorder, one which is not always pretty for those who suffer from it.

The Autism Problem

The Toronto Star has offered a concise, to the point, editorial on The Autism Problem. The factual context leading into the editorial is the situation faced by Susan Fentie-Pearce mother of a 14 year old autistic  boy "who has become increasingly violent -- pinching, kicking, biting and pulling her hair out." Ms. Susan Fentie-Pearce claims that she sought help from her elected Member of Parliament who allegedly suggested that she should have her son charged with assault so that a judge could "order him moved to the front of the line." for placement in a group home. The Star avoided the he said-she said argument and focused on the need to for Ontario to deal with the Autism Problem and increase funding for group homes and autism treatment.

The need for autism specific group homes, with autism trained staff and  centers or  "villages" designed to provide a decent life for the most severely affected by autism exists in most Canadian provinces including here in New Brunswick.  It is not really a choice. We can either continue to dump the most severely affected by autism disorders in psychiatric hospitals and prisons or we can provide a range of decent autism specific residential facilities to accommodate their needs when their parents no longer can.

It is not a question of whether tax payer dollars should be spent on early intervention, autism specific education, community centers to assist parents or adult residential facilities. Autistic persons need help across the life span.  If we do not address our minds, and dedicate adequate resources, as a society, to helping autistic youths and adults live in decent residential  facilities, if we simply throw them overboard in choppy waters of difficult economic times we are not humane.

Autism, Environment and Genetic Mutations: Hamilton Steel Mills and Conor's Autism Disorder

The dark smokestacks and olive green buildings on the left are part of the Stelco steel mill, the mint green ones in front of that and to the right are Dofasco. The skyway bridge (8 lanes wide!) that runs between connects east Hamilton to west Burlington over the Hamilton Habour (the western end of Lake Ontario.)

Photo and information above from skyway-ingenia, Lisa Shadforth

Genetic Mutation has been a hot topic in the autism news with several studies pointing to genetic mutations as indicating increased autism susceptibility. Genetic mutation can occur as a result of a number of different factors including chemical and radioactive insults. A story in today's Toronto Star dealing with genetic mutation in Hamilton Ontario mice really made me sit up and take notice.

Mice breathing the air downwind from Hamilton's two big steel mills were found to have significantly higher mutation rates in their sperm, a new Health Canada-led study says.

While there's no evidence that residents of the area are experiencing the same genetic changes, the project's lead author says the findings do raise that question.

"We need to do that experiment and find out," said Carole Yauk, a research scientist with Health Canada.

A future study will look at "DNA damage in the sperm of people living in those areas."

...

Dr. Rod McInnes, director of genetics at Canadian Institutes of Health Research, said the mice could be "the canary in the coal mine" signalling the genetic risks to humans of breathing toxic air. ... While genetic changes in sperm would not affect a male directly, they'd get passed on to the offspring that receive his DNA.


The story reports on a study indicating that the mice living under the Burlington skyway downwind from 2 Hamilton steel mills and breathing the air from those mills for a period as short as 10 weeks were found to have significant sperm mutations. The study Germ-line mutations, DNA damage, and global hypermethylation in mice exposed to particulate air pollution in an urban/industrial location is published in this weeks edition of PNAS.

Why did this particular story grab MY attention? We lived on Leominster Drive, in the westerly area of Burlington adjacent to Hamilton for 12 months prior to Conor's conception and a further 9 months until he was born at the Joseph Brant Memorial Hospital in Burlington. Two years later he was diagnosed with PDD-NOS, later changed to Autism Disorder with profound developmental delays.

Enough information to jump to rash conclusions? No. Pause for thought? Yes.

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Autism Reality - What Happens To Our Children When We Are Gone?

I may have been too quick when I mentioned the excellent Vancouver Sun feature Faces of Autism as one of the rare exceptions to the "feel good" avoid autism reality mindset of the mainstream media. In Who will care when the caregiver goes? the Toronto Star discusses the fear that haunt many parents of autistic children - what happens when we are gone? Who will care for our autistic children, where will they live, and how? Will they be happy?

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Residential Care, Treatment, Needed for New Brunswick Autistic Youths, Adults

In New Brunswick much progress has been made for pre-school autistic children. Some funding is now available for evidence based autism interventions and agencies have been established, and measures implemented, to provide accountability in delivery of intervention services. Improvements are also starting to be made to provide autism trained teacher assistants and resource teachers to provide autistic school children with a real education. But for youths and adults with autism who are in need of decent, competent residential care and treatment nothing has changed since the fall of 2005. That was when Canada became aware that New Brunswick is so lacking in residential facilites with properly trained personnel and in treatment for autistic youths and adults that we truly literally house some of our autistic residents on the grounds of penal institutions. There has been a provincial election in the period since 2005 and a new governing team is just now getting its full grip on the reins of power. Nonetheless the time is long overdue for New Brunswick to start providing decent residential care and treatment for its autistic youths and adults - right here in New Brunswick.


Autistic boy kept in New Brunswick jail

No other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution." ........


http://www.canadiancrc.com/articles/Tor_Star_Autistic_boy_kept_NB_jail_19OCT05.htm