Parent Advocacy, Autism Services and the Lack of Decent Adult Autism Care in New Brunswick

In Canada October is our official Autism Awareness month.  

That is not as widely known as it might be for a number of reasons including the fact that we live next door to the large, influential United States where April is the official Autism Awareness month. A second reason is that we do not have a meaningful National Autism Strategy.  Here in Canada our federal government has taken a small and narrow approach to autism.  Our federal government plays no meaningful role in providing autism services across Canada and in fact plays no meaningful role in providing reliable evidence based information about autism.  For that reliable autism information parents and autism advocates have had to look to the United States for guidance. It is quite understandable in those circumstances if Canadians assume that April is also autism awareness month here in Canada. In some provinces though, particularly British Columbia and New Brunswick strong parent advocacy did lead to creation of evidence based autism services being available. 

Here in New Brunswick we live in one of Canada's smaller, less affluent provinces.  Nonetheless we were, for a while at least, a Canadian leader in provision of evidence based early autism intervention, thanks to strong parent advocacy and sound guidance about evidence based autism interventions from UNB Professor Emeritus (Psychology) and clinical psychologist Dr. Paul McDonnell. With the information base to which Paul McDonnell directed us, parents were able through determination and strong advocacy, to prompt our governments, both Conservative and Liberal,  to provide evidence based early intervention services, in both English and French at a level that was recognized by the Association for Science in Autism Treatment:

"ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services"

Saturday, October 23, 2010

I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.

There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.

And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.

It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.

Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.

David Celiberti, Ph.D., BCBA-D, President

Association for Science in Autism Treatment"

The most advocacy focused organisation in New Brunswick was group, of which I was a founding member, called FACE ... Family Autism Center for Education. Despite the reference to Education in the title FACE was primarily an advocacy organization that. because of its advocacy focus, did not enjoy official charitable status. We met in my law office board room on King Street in Fredericton and we lobbied persistently online, through the "regular, mainstream" media such as CBC, Rogers Television, The Daily Gleaner and the Telegraph Journal.  Eventually we were able to convince more reluctant members of the provincial Autism Society to join our advocacy efforts and we returned to the Autism Society New Brunswick. Together parents stood in front of the Legislature and other provincial government buildings holding signs and making our voices heard.  

Ultimately we received conscientious, serious responses from high political leadership in the Conservative Bernard Lord government and subsequently in the Liberal Shawn Graham government. With responsive leadership from our provincial cabinets we were able, for a considerable period of time, to leap frog over the more bureaucratically inclined senior civil servants who wanted to go slow who lacked the understanding of the need for urgency in helping our autistic children. 

As noted by ASAT's David Celiberti we were able to establish a strong early intervention autism service base here in New Brunswick.  We were also successful in having our governments begin providing strong autism training to Teachers' Aides and Resource Teachers to assist autistic children in our schools.  That fight was somewhat more difficult.  "Educators" did not really see it as the place of parents to play a significant role in determining what services are available in NB schools.  Again, we appealed to our political leadership and with solid information from local experts like Paul McDonnell and US sources like ASAT,  the Office of the US Surgeon General and state autism reports from Maine, New York and California we were successful. We also used the tools at our disposal including appeals under our provincial Education Act and Human Rights Act to help our autistic children receive autism trained aides in our schools.

Strong parent advocates in British Columbia played a significant role in providing tools for New Brunswick parents to use in exerting political pressure here. The Hewko BC Supreme Court decision and the Auton BC Supreme Court  and Auton BC Appeal Court  decisions (until the latter was reversed by the Supreme Court of Canada) provided valuable tools to assist us in our advocacy here in NB.  Ontario parents fighting for autism education services in the Deskin-Wynberg litigation were also of great assistance to our efforts here in NB. 

New Brunswick parent advocacy was very successful in establishing the early intervention and school autism services here in NB.  We intentionally started out by focusing on early intervention services and then moved on to the school years.  Unfortunately the success we enjoyed in advocating for our children in early intervention and school services has not been repeated in the adult years. We are as we have been for many, many years largely bereft of any meaningful adult autism care residential care and treatment services.  Our more severely impaired autistic adults will, if they are lucky, live in group homes staffed by people with no autism specific training and little if any professional oversight. Those, like my son, who are severely autistic AND developmentally challenged will probably have to live in hospital facilities, again, if they are lucky.  New Brunswick has for many years ignored these serious needs of autistic adults although there are some signs of an awakening in the form of a pilot project involving the training of one service providers at one group home. 

We also have to continue the battle to make our civil servant decision makers understand that some people with autism have other challenges which present themselves which can provide very serious risks to the safety of autistic adults. Many with autism and intellectual disability also suffer from seizures, some of which are life threatening.  Some on the autism spectrum, including some with higher functioning levels also suffer from serious challenges like depression, challenges which may be made very difficult to address because of their autism disorders. 

In Autism Awareness Month in Canada we still lack a meaningful National Autism Strategy.  Here in New Brunswick our successes at early intervention are still recognized as in they were by ASAT in 2010 and by a mother who recently returned to NB from Ontario to open a Bistro in her hometown of Woodstock and because New Brunswick offered better autism services for her autistic son than those that were available in Ontario:

"Opening a restaurant, however, was not the motivation to bring McQuade back to Carleton County. She has a four-year-old son with autism, and she says the treatment in New Brunswick is more accessible and better than what was available to her in Ontario."

A new bistro in the square, Telegraph Journal, September 5, 2013

Many New Brunswick parents whose children are currently receiving early autism intervention services or school autism services may be unaware that it was parent advocacy that led to the creation of these services.  We have to be vigilant to maintain and expand these services at the early and school years. And we absolutely have to work to bring to the attention of government the need for a full range of autism residential care services and for the end of policies of excluding adults with Aspergers/autism from other mental health services.

An Autism Parent's Letter to Morton Ann Gernsbacher

Morton Ann Gernsbacher, Professor of Psychology, President Association for Psychological Science


Centracre mental health facility in Saint John New Brunswick Canada which houses patients with a variety of mental disorders including persons with severe autism. It is not known whether Ms. Gernsbacher has ever visited such a facility to consult with autistic residents of such facilities about meaningful participation in her research efforts.

"Listservs, Yahoo groups, and even Second Life are teeming with autistics’ informed and articulate discussions of autism research — from persuasive deconstructions of their putative lack of mirror neurons, empathy, and theory of mind, to provocative hypotheses about atypical minicolumns, Purkinje cells, and 2D:4D ratios, to book-club-like discussions of the classics. Press releases, conference presentations, and journal articles are devoured and digested, sometimes with burps as simple as “no sh*t, Sherlock” (in response to a Nature Neuroscience publication of mine).

However, autistics are almost never consulted by autism researchers (thereby violating the mantra of disability rights, “Nothing About Us, Without Us”), and often they are explicitly excluded. Ms. Dawson has documented Canadian research conferences that barred autistics from attending but curiously welcomed parents of autistic minors as expert contributors.

Why haven’t autistics’ own voices been heard? Why haven’t autistics been as actively recruited to participate in all aspects of the research process as they’ve been recruited to participate as research subjects (even posthumously by donating their brain tissue)?

Perhaps it’s assumed that autistics just wouldn’t be able to handle high-level research. If so, someone ought to tell Vernon Smith, who was awarded the 2002 Nobel Prize in Economics (alongside APS Fellow Daniel Kahneman) for pioneering the field of experimental economics. And somebody better alert Richard Borcherds, who was awarded the mathematics equivalent of the Nobel Prize — the Fields Medal — in 1998. Both academics are diagnosed autistics. "

- Morton Ann Gernsbacher,
The True Meaning of Research Participation
Observer, April 2007, Volume 20, Number 4

http://www.psychologicalscience.org/observer/getArticle.cfm?id=2147


Dear Dr. Gernsbacher:

Your paper The True Meaning of Research Participation is interesting and thought provoking. As the father of an 11 year old boy who is severely autistic I am somewhat disturbed though by your express identification of autistic persons with the high functioning persons mentioned in the article. Your basic point, that autistic persons should be consulted in research, assumes (1) that all autistic persons are capable of being consulted in a meaningful way or (2) that high functioning persons such as your colleague Ms Dawson, Amanda Baggs, or Jim Sinclair, are representative of the great number of autistic persons, including my son, who do not share their communication abilities. Your article also goes on in a very flimsy way to suggest that objectivity is not an issue when these persons are involved in research. I hope you will not be too offended that I, a mere parent, find your assumptions faulty and your argument flawed.

I will not insult someone of your academic standing in the discipline of psychology by citing studies and reports which indicate that many autistic children do in fact have serious cognitive and communication impairments which render meaningful consultation by such less fortunate autistic persons an impossibility. You know this already although you do not address this point in your article.

I am not as certain though about the second possibility. Your whole article seems to be premised on the belief that Ms Dawson, Ms Baggs, Mr Sinclair and other autistic persons with very substantial communication and comprehension abilities are somehow representative of autistic persons such as my son who have much lower abilities in these areas, who can barely communicate at all, and in many cases, can only do so after years of Applied Behavior Analysis intervention. If that is indeed your assumption then as a parent who has actually lived 24/7 with a severely autistic son for 11 years I have to say I find your assumption to be flawed and not based on any obvious understanding of the realities of autism for persons with more severe cases of autism.

I spoke twice by telephone with Ms. Dawson, albeit briefly, when I was president of the Autism Society New Brunswick. On those two occasions she contacted me seeking access to a copy of a document prepared at the request of ASNB for possible use in litigation. Ms Dawson as you know has very substantial comprehension and communication abilities. What she does not have is much in common with my son or the many low functioning autistic persons who lack basic communication and comprehension. These are two important areas of life. They can literally mean the difference between life and death if, by way of a personal example, a child does not realize that cars will hurt him upon contact.

These differences can mean that dialogue between parent and child, and other persons in the child's life, is extremely limited. These differences mean that many lower functioning autistic persons will live in institutional care for the rest of their lives. This is an existing reality not an academic theory or debate. As a lowly parent, concerned about my son's future, I do not accept your flawed premise that Ms Dawson and others with similar comprehension and communication are sufficiently representative of the autism spectrum of disorders to suggest that autistic person are included in research by virtue of THEIR inclusion.

Your comments about objectivity are disingenuous at best and misleading at worst. Your own colleague, Michelle Dawson, has been a fierce opponent of efforts by Canadian parents to obtain government funded Applied Behavior Analysis treatment for their children. To that end she has appeared as an intervener in the Supreme Court of Canada proceedings in the Auton case and she has appeared before the Canadian Senate Committee which examined autism treatment funding issues in Canada. Ms Dawson's lack of objectivity is documented by her well known comments about parents and organizations seeking treatment for their autistic children:

"“They want autism to be a sickness that needs to be cured,” she said. “They say horrible disgusting things so they can get more money for their lobby groups. They make me sick,” Ms. Dawson said."

- Andre Picard, Globe and Mail, February 20 2006

If you check the internet you can find many more instances of disparaging remarks made by your colleague about parents and politicians seeking ABA treatment for autistic children. I do not share your professional standing. I am simply a parent. And I am a lawyer. Objectivity is also evaluated in my profession. Ms Dawson's public views about autism, and her demonstrated public hostility to parents, professionals and politicians seeking to treat or cure autistic children is more than ample evidence of her lack of objectivity. With respect your homage to Ms Dawson and other agenda driven high profile high functioning autistic persons also demonstrates your own abandonment of professional objectivity.

Ms Dawson has participated in your research as your colleague. Conor Doherty, an 11 year old with Autism Disorder, with profound developmental delays, has not participated and has not been consulted. Michelle Dawson does not speak for my son. Perhaps you, Dr. Gupta, Ms Dawson and Ms Baggs can make a visit to some mental health institutions where they care for youth and adult lower functioning autistic persons less fortunate then your friends. And please, revisit the quaint notion of objectivity while you are there.

Respectfully,


Harold L Doherty
Fredericton New Brunswick
Canada