New Brunswick STILL Needs a Modern Adult Autism Residential Care and Treatment Facility

Restigouche Regional Hospital, Campbellton New Brunswick

Centracare Long Term Mental Health Services Center, 

Saint John New Brunswick

New Brunswick adults with severe autism disorders need an alternative to the Centracare and Restigouche hospital models as recommended by NB Autism Expert Paul McDonnell in a 2010 CBC Analysis :

"We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."

Paul McDonnell, CBC Analysis, September 2010

A young Saint John New Brunswick woman has, thankfully, found a new home in a special care facility as reported by CBC in Autistic Saint John woman finds new home. The article indicates that the young woman's mother is relieved but is still concerned about her daughter's future.  The mother's concerns are similar to my own concerns about my son and severely autistic adults in New Brunswick.  Everyone should be concerned.  New Brunswick governments, both Liberal and Conservative, have pretended to deliberate on this issue for years without providing a real solution for the long term residential care and treatment needs of adults with severe autism issues.

There is a reference in the article to the review of youth mental health needs by former Ombudsman Bernard Richard.  What the article does not address is the fact that Mr. Richard and his advisers at the Office of the Ombudsman refused during the review in which I participated to give serious consideration to the possibility of recommending that the government establish a facility for the permanent residential care and treatment of youths and adult with autism disorders.  The need for such a facility has been highlighted by stories similar to the young SJ woman's story for many years but the problem is simply ignored. 

Any attempt to discuss development of  a facility is treated with disdain by adherents to the New Brunswick Association for Community Living philosophy  that dominate New Brunswick public policy making for persons with disabilities.  Rather than find a sustainable, systemic  residential care and treatment solution  for persons with serious autism issues who can not live in group homes the NBACL dominated public policy mindset is to let severely autistic adults live in Psychiatric and other hospital wards,  live temporarily on youth prison grounds and hotels and even send them out of the country to long term care and treatment, at considerable public expense in Maine. For public decision makers who adhere to this philosophy anything is better than acknowledging that the simplistic community ideology does not provide a realistic, sensible solution for youth and adults with severe autism disorder deficits.

Autism experts have made submissions to the New Brunswick government on these issues and I have made representations as an autism society representative  to governments both Liberal and Conservative, about the need for a Fredericton based (close to NB's autism expert base) adult autism residential care facility, spoken with media and commented several times over the last decade all to no avail:

October 2005, Toronto Star

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital. 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."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.

As I am quoted saying in the 2005 Toronto Star we (Autism Society NB) had been pushing for several years for better autism care facilities here in NB.  The 2005 incident did not result in action from the Liberal government of the day.

March 2011 - The Aquinian  (Karissa Donkin) - A Place for Conor

Doherty, a lawyer, is now in the fight of his life. As Conor nears adulthood, Doherty’s greatest worry is that the province doesn’t have the proper services for someone like Conor to maintain a high quality of life when they leave the public school system. He’s afraid Conor will fall through the cracks.

“My big fear is that he will simply be put into a room in Campbellton in the psychiatric hospital without any real life to live once I’m too old or deceased.

“On the other hand, I don’t want him dumped into one of the group homes they have.

“They don’t have staff trained to help him and they don’t have enough programs to really work with someone like my son.”

Autism is a developmental disorder that affects a person’s communication and social skills. The severity of the disorder ranges from the severe form that Conor has to Asperger’s, a more mild form depicted in movies like Rainman. The Centre for Disease Control and Prevention says one in 110 children have autism.

New Brunswick provides care both in a patient’s home and in residential facilities for more than 6,250 adults under 65 with disabilities, including autism, says Department of Social Development spokesman Mark Barbour.

But Barbour admits the province needs to do more to help autistic adults.

“There is a need for more specialized services for autistic youth and adults, whose behaviours or conditions are severely impaired.

“These individuals require services and supports designed to specifically meet their high care needs.”

The province wants to build an autism residential facility, which would provide permanent care for severely autistic adults who can’t live on their own, Barbour said."

Department of Social Development spokesperson Mark Barbour's March 2011 comments about the province's desire to build a permanent care for severely autistic adults have not been followed by any subsequent public statements to indicate that the stated intention was anything more than a public relations sound bite.

June 2011 - Facing Autism in New Brunswick 

"In Autism resources in N.B. are a 'patchwork system' Jacques Gallant of the Times & Transcript has reported on the state of autism services here in New Brunswick (Canada, not New Jersey).  As Mr. Gallant reports, our early autism intervention services have received justified praise and our schools have made significant progress although much improvement is needed especially in rural schools. I am interviewed and discuss, in particular, my concerns about the wholly inadequate state of adult autism specific residential care facilities in New Brunswick.  We have group homes with untrained staff who can't accommodate the most severely challenged autistic adults and we have psychiatric hospital in northern New Brunswick far from most of our population.  Other than that we have resorted to temporary housing in hotels, general hospital wards, youth prison grounds and shipping our autistic population out of the province and even out of the country to nearby Maine.  New Brunswick needs an autism specific residential care facility, based in Fredericton, close to the autism expertise that has been developed at the UNB-CEL Autism Intervention Training program and the Stan Cassidy Centre Autism team.  The center should have a variety of configurations and buildings to accommodate the differing needs of the range of autistic adults on the spectrum.  It should have the trained staff and quick access to the autism professionals in Fredericton to help provide continued adult education, recreation and life enjoyment opportunities for autistic adults in New Brunswick. " 

Costs have always been a challenge in establishing a permanent residential care facility for New Brunswick adults with severe autism.  That is a given and always will be.  There are however serious costs associated with the failure to build such a facility.  The primary consideration blocking the establishment of a residential care facility in Fredericton where autistic adults could receive some expert autism care during their adult years has been the overwhelming domination of social policy decision making by the "community", "inclusion" mindset of the NBACL and its partners in government.  It is simply not possible for those who subscribe to that belief system to consider alternatives. 

During the last election UNB Psychology Professor Emeritus and Clinical Psychologist Paul McDonnell, New Brunswick's foremost autism expert, who has done more for autistic children and adults then anyone else in the province commented on CBC about the need for an adult autism residential and treatment facility:

September 2010, CBC, N.B. can be a leader in autism services (Analysis, Paul McDonnell)


"Our greatest need at present is to develop services for adolescents and adults.

What is needed is a range of residential and non-residential services and these services need to be staffed with behaviorally trained supervisors and therapists.Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities.The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger's Syndrome that have no access to professional services of any kind.

In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family, or the community.

We can do much, much better.

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."


The  realities facing severely autistic adults in NB have been clear for many years.  Periodically those realities show up in, usually unpleasant, media reports.  Our governments however have simply chosen to ignore those realities.  They are stuck, not on financial costs but on their ideological mindset, the refusal to implement a system as described by Professor McDonnell.  New Brunswick's autistic adults need a centralized, adult facility in Fredericton close to our autism expertise which could provide permanent residential care and treatment for severely autistic adults and could provide expert assistance to autism specific adult group homes, operating with autism trained staff, in communities around the province.   Such a system would actually address the adult care realities that surface periodically in media reports and help New Brunswick's severely autistic adults live and enjoy their adult years.  

AOL Huffington Post Blogger Zurcher Promotes Autism Disorder Denial

I love and accept my son unconditionally. I  do not

 embrace the autism disorder that restricts his life.  I 

will speak honestly about autism disorders. 

Ariane Zurcher is a jeweler, author and mother of a child with autism.  Zurcher  though is tired of people talking about autism as though it were a disorder or group of disorders. In the AOL Huffington Post opinion piece The Depiction of Autism and Why It Matters Zurcher says she is tired of negative depictions of autism.  She criticizes those who do talk about the realities of autism disorders because ... well because in her view she has outgrown such views and so must we. No mention should be made of the deficits that led parents to seek medical advice in the first place, to find out what was wrong with their child.  No description should be made of the deficits that resulted in a medical diagnosis of autism in the first place.   Zurcher wants us all to talk about autism as though it were ... jewelry, pretty, sparkly jewelry.

The word disorder does not appear in Zurcher's opinion piece.  There is mention of deficits (without any description of those deficits) associated with autism but primarily for the purpose of chastising the media and anyone who uses negative imagery in talking about autism.   She does not describe in any detail the harsh realities facing those severely affected by autism disorders.  

Ariane Zurcher has tired of searching for treatment for her child's autism and doesn't want others to talk about autism as though it were a disorder.  Like other joy of autism authors before her Zurcher's solution to autism is simple: talk to some very high functioning celebrities with "autism" and talk about autism like it is not a disorder after all.  Embrace your child's autism and forget about the deficits your child displays which led you to seek medical advice for him or her in the first place.

I have always loved my son unconditionally and my blog is full of pictures of the many joyful times I have spent with him.  I find great joy in my son.  It is because of my love for my son that I will not walk the path of autism disorder denial that Zurcher and others before her have chosen.  I applaud the parents and organizations that stay strong and continue the efforts to fund research to find causes, treatments and cures for autism disorders.  

I will continue to speak honestly about autism disorders and the autism deficits that limit the lives of so many who suffer from them.  I hope that other parents stay strong and continue to support efforts to research and find the causes of, and treatments and cures for,  autism disorders.  

DSM5 Autism Change Threatens Funding for Intellectually Disabled Who Meet DSM-IV Autism Criteria

Many children with intellectual disability and autism will be specifically targeted for exclusion under the DSM-5 new Autism Spectrum Disorder. The express wording of mandatory criterion A of the DSM-5 ASD criteria makes this clear:

"Autism Spectrum Disorder

Must meet criteria A, B, C, and D: 

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays"

Very, very few people, apart from myself, have expressed any concern over the express and specific exclusion of intellectually disabled from future autism disorder diagnoses.  No one has seriously discussed the rationale for targeting the intellectually disabled in this fashion.  The NYT has been upset over the likely removal from the autism spectrum of very high functioning persons with autism and Aspergers but has expressed no similar concern over the exclusion of the low functioning, intellectually disabled.  The most vulnerable, as they have been so often, are not considered as worthy of our concerns as the less vulnerable members of the autism spectrum. 

It came as a pleasant surprise to me to read an article on GoErie.com, Changes threaten funding for children with autism, that mentions the likely exclusion of intellectually disabled children with autism, as well as high functioning children with autism, under the DSM-5 Autism Spectrum Disorder. Featured prominently in the article are comments by a medical doctor and by a health care organization administrator which highlight the negative impact on funding for autistic children with intellectual disabilities resulting from the DSM5 autism changes:

"Children diagnosed with both mental disabilities and autism might no longer be eligible for autism services, if a new diagnostic manual is published as currently written.

Local families might have to pay out of pocket for their children with these dual diagnoses to receive autism support services, said Joseph Barber, M.D., an Erie pediatric neurologist.

"The concern is that funding for 'intellectual disabilities,' which is the new term for mental retardation, is more limited than the funding for autism," Barber said."

....

"The good news is that a recent study by Autism Speaks determined that the same number of children would be diagnosed with autism under DSM-5 as they would currently," said Maureen Barber-Carey, executive vice president of the Barber National Institute. "The concern is that children with intellectual disabilities would not be eligible for autism funding."

Dr. Susan Swedo, in reply to my questions at the IMFAR 2012 conference in Toronto recently, did indicate that not ALL persons with intellectual disability and autism would be disqualified from autism diagnoses under the DSM5 ASD criteria.  She indicated that the social communication challenges of mandatory criterion A would have to be present independent of the intellectual disability and would have to arise separately from autism.  How professionals would make that distinction in future is not clear to me.  Nor is it clear why, it should matter if an intellectually disabled child has serious social communication deficits he/she should not receive an autism disorder diagnosis if the other mandatory criterion for an autism diagnosis are also met.  

What was clear at IMFAR was that Dr. Swedo, and presumably the other members of the DSM5 committee responsible for the DSM5 Autism Spectrum Disorder, are feeling the pressure from the uproar over the possible exclusion of some higher functioning persons who would qualify for an autism diagnosis under the DSM-IV.  They appear to be hunkering down and are unlikely to make changes to the DSM5 autism criteria.  If they do though it will be at the high functioning end of the spectrum where the heat has come from not from the low functioning, intellectually disabled end of the autism spectrum where very few outside of myself and a few health care professionals in Erie appear to give a damn.

Conor and Mom Trail Time

End of May, first of June is a great time to be outdoors in Fredericton.  With beautiful weather the last couple of days Conor and Mom got outdoors for some fresh air and fun on the North Riverfront Trail. (Dad was there too, the invisible guy behind the point and click camera).

Atlantic Guest Columnist Breaks Autism Taboo, Discusses Economic Impact of Autism on Families

Atlantic guest columnist Laura McKenna breaks a major autism taboo by discussing the impact of autism in families, more specifically The Economic Impact of Autism on Families. This could be a real shock to those who feel that parents should have no input into discussions about autism generally and to those who want to prattle endlessly about the joys of autism as an alternative way of thinking. McKenna speaks very candidly about some harsh realities facing parents of autistic children:

"However, once the parent overcomes that grieving process, they have to endure a lifetime of smaller cuts. The therapy, which is so necessary for the child's success, is very expensive. Parents will fight insurance companies and school districts to cover the costs. Often, they are unsuccessful, and they must deplete family bank accounts. They face hostile school districts and community members who accuse the family of stealing their children's money. Families become drained both emotionally and financially. 

Working on their children's behalf becomes a full-time job. One parent, often the mother, either stops working or works less hours,  in order to manage the educational and therapy of the child. She must shuttle the child long distances to find the right services. She must navigate the health care bureaucracy. She must meet frequently with teachers and constantly negotiate with the school district to get the therapy that their children need." 

I recommend this article for anyone who is looking for a complete understanding of the realities of autism disorders and how they affect all of us, the diagnosed individual, the community, society and .... families with autistic children.  

ABA Treatment for Autism: America Leads, Lets Catch Up Canada, Lets Get Moving Again!!

At one time the argument might have been made that Canada led North America in terms of provision of evidence based treatment for autism.  Strong parent advocacy had made gains in encouraging provincial governments in British Columbia, Alberta and New Brunswick to provide Applied Behavior Analysis treatment. Our federal government, however, refused to get involved in any meaningful way and the Harper government played politics with the National Autism Strategy. The pitiful National Autism Symposium was postponed to allow the deck to be stacked with anti-ABA advocates and to weed out ABA advocates including me.  Here in New Brunswick our successful provincial program for early intervention based on the recognized (Eric Larsson, David Celiberti) UNB-CEL Autism Intervention Training program has  been abandoned at both the early intervention and school levels in favor of  in house autism intervention "training". In New Brunswick gains made are being abandoned, in Canada federally they never started.  In the Courts our Supreme Court of Canada, apart from a human rights and statutory analysis,  opined in Auton that ABA was an "emergent" therapy, notwithstanding earlier findings by the US Surgeon General, among other prominent authorities, that ABA effectiveness as an autism treatment was backed by 30 years and hundreds of studies.

Our good neighbors to the south, however, are taking autism disorders more seriously with more states requiring insurance providers to include ABA treatment and a 2012 federal judge ruling ordered that Medicaid cover ABA treatment in Florida.  Now Autism Votes, an Autism Speaks initiative, reports that the US federal government has concluded that ABA is primarily a medical, not just educational, therapy with the result that autistic persons among the 8,000,000 US federal employees will be eligible for ABA treatment under their medical coverage: 

Autism Speaks Hails Landmark Federal Decision Calling Key Autism Therapy a ‘Medical’ Service Eligible for Insurance

NEW YORK, NY -- Autism Speaks hailed today’s announcement by the federal government, the nation’s largest employer, that Applied Behavior Analysis (ABA), the most widely used behavioral intervention used to treat autism, is a “medical” therapy that qualifies for health insurance coverage, rather than an “educational” service.

The decision by the U.S. Office of Personnel Management (OPM) involves health insurance coverage provided to the nation’s eight million federal employees, retirees, and dependents, under the Federal Employees Health Benefits (FEHB) Program. It could have even more far-reaching implications on the health insurance benefits provided all Americans living with autism, as it will be much harder for insurance companies to continue denying coverage for ABA treatment.

. 

“The OPM decision directly contradicts a long-standing insurance industry claim that ABA therapy is not ‘medical,’ but rather ‘educational’ - provided by the schools at taxpayer expense,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now, tens of thousands of families will have better access to more affordable, critical ABA treatment.” 

The decision was rendered in the form of guidance to insurers who participate in the FEHB Program for policies that will be renewed or issued starting in 2013. The OPM decision does not require the insurers to cover ABA, but rather allows them to offer the coverage as it does many other medical treatments. The guidance reads: “The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”

Autism Speaks has fought to provide families insurance coverage for ABA therapy through state-regulated plans, self-funded group plans that are regulated under federal law, the FEHB Program, and TRICARE for military families. In each instance, opposition to covering ABA treatment has been based in large part on the claim that ABA is educational, rather than medical."

In Canada our provincial government health care providers defined autism intervention as a social service rather than a medical necessity helping it avoid responsibility for autism coverage in the Courts. Canada still has an autism advocacy movement at work trying to right the Canadian autism ship which has floundered on the rocks of indifference.  Medicare for Autism Now! has been fighting hard to encourage our disinterested federal government to take autism seriously, meet with the provinces and get effective ABA treatment covered for autism under all provincial health care legislation.  

Wake up Canada! We are not falling behind in autism treatment we have already fallen way, way behind.  Get behind Medicare for Autism Now! and provide your support, get involved.  When we wave the Canadian flag this July 1st lets remember our autistic children in need of effective ABA treatment. If our American friends can wake up and address the autism crisis that confronts us all surely we Canadians can do so too,  EH?

"Thinking" Persons Guide to Autism Issues Proclamation Declaring Autism Speaks Does Not Benefit Autistic People

Some of the people referenced in this post are affiliated with Autism Speaks. TPGA does not consider Autism Speaks an organization that benefits autistic people. -SR

I am not sure what constitutes "Thinking"  at the "Thinking" Persons Guide to Autism. The above quote from "SR", Shannon Des Roches Rosa, precedes a blog comment by Carol Greenburg, a TPGA sponsored blogger at the recent IMFAR 2012 conference in Toronto. I attended IMFAR courtesy of Autism Speaks and found the conference to be an amazing experience. (Although attending courtesy of Autism Speaks my attendance still cost me considerably as I lost 3 days out of my legal practice and time I could have spent with my son Conor). 


I am not totally surprised that SR would make a statement of that nature about Autism Speaks. This is after all the same individual who used tragedy to promote TPGA ideology and products: 

"Vanquish the Forces of Autism Evil! Declare Your #AutismPride!

 When I hear about yet another dangerously misinformed autism parent killing their child because of  autism fears, I literally fall to my knees with grief. What kind of world do we live in, if people can't bear. ........ I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.

It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics. ........this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week)."

I notice that Autism Speaks wasn't mentioned on SR's "blame" list when she wrote the above comment in response to the tragedy of a mother taking her autistic child's life. Prosecutor's in that case declined to prosecute the woman because they doubted they could prove her sanity at the time she killed her child.  But that didn't stop the self referenced "squidalicious" Shannon DRR from launching her bizarre rant against parents and others who view their child's autism disorder as a ......... disorder.

Autism Speaks deserves to be criticized, like everyone else, on occasion. My oldest non-autistic son finds ample, and I mean ample, reason to criticize me and I actually get a kick out of it when he does.  As the father of a severely autistic son with profound developmental delays I am not sure at times whether all those "thinkers" at the TPGA actually realize that, notwithstanding all their feel good buzzing about autism as an alternative way of thinking etc.,  autism is still a ..... disorder.   I am a bit surprised that SR would identify Autism Speaks as one of the forces of evil and I am not sure why but I assume it is because AS helps fund cause oriented research which may some day result in treatments and cures for autism disorders.

My own frustrations with Autism Speaks arise from their attempts to be all things to all people and in the process downplaying some of the harsher realities of those most severely affected by autism disorders.   In particular I believe that Autism Speaks glosses over the strong connections between Autistic Disorder and intellectual disability.   Autism Speaks has, however, been a key factor in the research area in particular; both genetics and environmental autism research, although I would like to see more emphasis on the environmental research. While I disagree with some of their decisions and directions overall I believe Autism Speaks is a positive force that does benefit autistic people, particularly in raising funds for autism research. Of course as a parent of a son with severe challenges arising from his autistic disorder, and as an unthinking person, my opinion probably doesn't count for much as a guide to autism issues.


I guess it is just par for the course that if you try to please everyone you risk pleasing no one and certainly not someone who identifies so many parents and parent driven organizations as "forces of evil".    I will have to start reading TPGA more closely now, not in hopes of learning anything constructive about autism disorders, but for the amusement value of seeing from day to day who SR and the TPGA have proclaimed to be not acting for the benefit of autistic people.   

A Focused Environmental Autism Research Strategy Is Needed

If you have a child who is severely affected by an autism disorder, whose ability to understand the world is limited, who wanders into dangerous traffic, lakes or rivers,  is prone to seizures or  engages in serious self injurious behavior autism is not just an alternative way of thinking or an opportunity to build a career mouthing empty feel good cliches about autism acceptance on twitter.  If you are a parent with a severely autistic child you will probably fight for evidence based autism interventions, accommodation in the schools for autistic students and a place for them to live with dignity as you grow old and ultimately die.  These are the harsh realities faced by  parents with low functioning autistic children who must look at autism seriously and not as an opportunity to tell the world that everything problematic about autism is solved if we all just accept autism in our child. For many parents we would like to see solid scientific research into all the causes and conditions that create autism in our children, genetic and environmental causes.

Autism may be prevented, treated or even cured in the future if the research is done.  If that research leads us to the age of the father in some cases then that is important to know. If that research leads us into the multitude of possible impacts on children while in the incredibly important environment known as the womb then that research must be done.  What will not help in understanding autism is simply throwing our hands up in the air and arguing that we should not conduct research on the prenatal environment or in mocking attempts to research possible environmental causes of autism as some Neurodiversity bloggers like to do.  

For many of us our child's Autistic Disorder is a serious, life impairing disorder, and a mystery  that must be solved by solid research, genetic and environmental. Environmental research has been short changed and a solid environmental research strategy is required as recently advocated by Philip Landrigan and his colleagues in A Research Strategy to Discover the Environmental Causes of Autism and Neurodevelopmental Disabilities. Landrigan and his colleagues Luca Lambertini and Linda Birnbaum of the Children’s Environmental Health Center, Mount Sinai School of Medicine, New York and NIEHS and NTP, National Institutes of Health, Department of Health and Human Services, Research Triangle Park, North Carolina.  

The distinguished authors argument includes a "proof of principle" segment in which they list studies linking various toxic substances to neurodevelopmental impairments:

"Exploration of the environmental causes of autism and other NDDs has been catalyzed by growing recognition of the exquisite sensitivity of the developing human brain to toxic chemicals (Grandjean and Landrigan 2006). This susceptibility is greatest during unique “windows of vulnerability” that open only in embryonic and fetal life and have no later counterpart (Miodovnik 2011). “Proof of the principle” that early exposures can cause autism comes from studies linking ASD to medications taken in the first trimester of pregnancy—thalidomide, misoprostol, and valproic acid—and to first trimester rubella infection (Arndt et al. 2005; Daniels 2006).

This “proof-of-principle” evidence for environmental causation is supported further by findings from prospective birth cohort epidemiological studies, many of them supported by the National Institute of Environmental Health Sciences (NIEHS). These studies enroll women during pregnancy, measure prenatal exposures in real time as they occur, and then follow children longitudinally with periodic direct examinations to assess growth, development, and the presence of disease. Prospective studies are powerful engines for the discovery of etiologic associations between prenatal exposures and NDDs. They have linked autistic behaviors with prenatal exposures to the organophosphate insecticide chlorpyrifos (Eskenazi et al. 2007) and also with prenatal exposures to phthalates (Miodovnik et al. 2011). Additional prospective studies have linked loss of cognition (IQ), dyslexia, and ADHD to lead (Jusko et al. 2008), methylmercury (Oken et al. 2008), organophosphate insecticides (London et al. 2012), organochlorine insecticides (Eskenazi et al. 2008), polychlorinated biphenyls (Winneke 2011), arsenic (Wasserman et al. 2007), manganese (Khan et al. 2011), polycyclic aromatic hydrocarbons (Perera et al. 2009), bisphenol A (Braun et al. 2011), brominated flame retardants (Herbstman et al. 2010), and perfluorinated compounds (Stein and Savitz 2011).

Toxic chemicals likely cause injury to the developing human brain either through direct toxicity or interactions with the genome...."

Landrigan, Lambertini and Birnabaum generated a list of 10 chemicals that they recommended as priorities for investigation.  They expressly stated that the list is not intended to be exhaustive but is intended to provide a strategic environmental research focus to catalyze new evidence based programs for prevention of neurodevelopmental disorders in children. The  list includes some very well known dangerous substances:

1. Lead (Jusko et al. 2008)
2. Methylmercury (Oken et al. 2008)
3. Polychlorinated biphenyls (Winneke 2011)
4. Organophosphate pesticides (Eskenazi et al. 2007; London et al. 2012)
5. Organochlorine pesticides (Eskenazi et al. 2008)
6. Endocrine disruptors (Braun et al. 2011; Miodovnik et al. 2011)
7. Automotive exhaust (Volk et al. 2011)
8. Polycyclic aromatic hydrocarbons (Perera et al. 2009)
9. Brominated flame retardants (Herbstman et al. 2010)
10. Perfluorinated compounds (Stein and Savitz 2011).
    
    

Landrigan, Lambertini and Birnbaum recognize the importance of genetic research but, as other learned authorities have noted, genetic research has received the overwhelming share of autism research dollars. The recent IMFAR conference in Toronto left me with the impression that the "it's gotta be genetic" trend of channeling autism research overwhelmingly toward genetic research  is continuing. As these learned authors have argued so compellingly it is critically important that environmental autism research be focused .... and funded ... if autism disorders are to be prevented, treated or cured in future.

Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash

I have never accepted, and have in fact been openly contemptuous of, the view that autism is a joy, an alternative, even superior way of thinking.   My son's autistic disorder diagnosis accurately describes autism as it really is ...  a disorder, one that  impairs the lives of those, like my son Conor, who suffer from that disorder.  In my view those who promote autism as anything other than what is, who portray autism as a feel good alternative way of thinking delude themselves and ill informed members of the public. In societies where the public participates in a democratic process to determine what services and interventions will be made available to help those in need the light and fluffy portrayals of autism do a serious disservice to those with severe autistic disorders who require help in living and enjoying their  lives.

In the picture above, and most that follow these comments, my son is shown enjoying time on the swings at the neighborhood grade school he attended several years ago.  We arrived early and no one else was present on the grounds. There was no sensory overload.  It was overcast and mildly cool but very pleasant. We made no demands on Conor and let him enjoy his time on the swings which, for the most part, he did.  We were there only  a few minutes though when, quite suddenly and with no discernible external causal factors, no external stress factors, he began hitting himself on the head.  There was no apparent internal cause for his sudden shift to self injurious behavior either.  He had enjoyed breakfast and had visited our washroom facilities for personal reasons.  He showed no indication of discomfort whatsoever prior to switching suddenly from enjoying the swings to self injury. 

Conor's sudden shift from enjoying the swings to self injury suprised me only because it was so sudden and occurred while he was thoroughly enjoying himself.   After 16 years of 24/7 caring for my son I have no idea what caused this specific outburst of Self Injurious Behavior (SIB) any more than most similar incidents where there were no obvious external or internal causes.  What I do believe, and believe fully, is that such sudden SIB's are a result of his neurological disorder, his autistic disorder.  I don' t give a darn whether any autism experts accept my anecdotal evidence or not.  Conor's SIB is part of his autistic disorder.  The many well intentioned autism researchers who gathered in Toronto for the IMFAR convention might wish to consider spending more of their time, resources and intellects reseaching Self Injurious Behavior in persons with Autistic Disorder or Autism Spectrum Disorder as it will be officially known after May 2013.

After IMFAR Some Green Therapy

My 4 days at IMFAR 2012 in Toronto were an incredible experience. After 4 days spent largely inside a hotel though I was in need of some "therapy". Yesterday I hit the trails for some outdoor Conor time.  Felt great.  

Today more time outdoors enjoying the green city  of Fredericton and its surroundings.  Green therapy works every time.  I should have asked Ilanit Gordon Ph.D. of oxytocin fame to do some fMRI scans to get my baseline measurements at the end of the IMFAR conference and then do some more today after a couple of good outings on the North Riverfront Trail and around Killarney Lake. Oxytocin? Not for me thanks.  Green therapy, absolutely!