Millions for Woodstock Civic Center But No Time to Answer a Simple Adult Autism Care Question

Second from Left, NB Premier and Woodstock MLA David Alward 
PHOTO BY MICHAEL MACDONALD/NBCC WOODSTOCK

On January 4 2012 I emailed New Brunswick Premier David Alward and relevant cabinet ministers the following inquiry which asked simply whether his government was considering helping autistic adults and is working on a modern, reality based model. I also asked if such an undertaking was not being considered to please say so straight up. 

Health Minister Madeleine Dubé's office was the only one to acknowledge receipt of my email.  I have received no substantive response to my question or concerns to date from Premier Alward or any of the relevant Ministers. The question itself requires no research, no public consultations.  It is a simple information request.  The question of adult autism residential care has haunted parents of severely autistic children in New Brunswick for many years. It was probably expecting too much to receive a prompt answer to a direct question. 

In the meantime though 8 million dollars of federal and provincial dollars are being poured into upgrading a civic center in the Town of Woodstock in Premier Alward's riding.  No time to answer a simple question about adult autism care in New Brunswick but lots of time and money for a civic center in Woodstock.  I absolutely do not begrudge the good people of Woodstock an upgrade to their recreational and community center but a few minutes to answer a simple question about adult autism care does not seem unreasonable either. Maybe I should have used an old fashioned letter for my inquiry and mailed it with a Woodstock P.O. Box return address? 

January 4 2012


Dear Honourable Premier, Honourable Ministers
and Respected Recipients


Re: Adult Autism Care And Treatment - NB Continues To Fail Autistic Adults In Need


I am the father of a 16 year old son with severe Autistic Disorder and "profound developmental" delays. He is now 6'1" with the strong, solid physique his father once had in younger days. At some point in the future I will be too frail to provide the care he requires and ultimately will of course no longer be available at all to help him. I began my involvement in autism advocacy in New Brunswick approximately 13 years ago. Along with other determined parents I fought hard, very hard, for early evidence based intervention for autistic preschoolers and for the means to deliver those interventions. I advocated strenuously for autism specific trained education assistants, teachers and resource teachers. Some success has been enjoyed because of the efforts of parents of autism in the area of preschool and school services. New Brunswick has even been cited as a model from which American authorities could learn by the Association for Science in Autism Treatment. The same can not be said, at all, when it comes to adult residential care and treatment


I also advocated for adjustments to the total inclusion education model in our schools. My son's self inflicted bite marks on his hands and wrists declined and disappeared entirely once removed from the mainstream classroom where he was overstimulated, overwhelmed, frustrated and learning nothing because of his serious autism deficits. I have been a determined opponent of the excessive dominance in our schools and facilities of rigid, ideologically based inclusion and community models. This mindset discriminates against severely autistic persons by failing to accommodate their real needs. Our children have, at times, been sacrificed to the vanity of a community movement which can not adjust to differing needs, experiences and expertise. I participated in regular disability committee meetings held by the Department of Education until they were disbanded, the MacKay review and the Ministerial Committe on Inclusive Education. Believe me or not but many teachers and teacher representatives have told me in confidence that they shared my aversion to the rigid inclusion model which has caused considerable suffering to some children and has disrupted the education of others unnecessarily. My son has been accommodated because of my advocacy and because educators who dealt directly with my son were conscientious, could see what he needed and acted in good faith to help him. I know that not all severely autistic children have been as fortunate.


Nowhere has the insistence on an inflexible and non evidence based inclusion model hurt autistic children and adults more though than in the area of residential care and treatment as they move from childhood to adolescence and ultimately adulthood. What awaits is a model which includes a belief in "community" backed up by group homes with untrained, underpaid staffers at one end of a spectrum of care. At the other end of that spectrum is the regional psychiatric care hospital in Campbellton. In between the two ends is a huge gap. What is need is at least one centrally located permanent residential care and treatment facility for severely autistic adults. Such a facility could be modernized and based on existing models in the world. It could include the professional assistance needed to provide care for severely autistic adults in a setting designed to provide them with a decent life, with continuing education and recreation opportunities. The facility should be based in Fredericton, not because I live here but because Fredericton is where our evidence based autism interventions and facilities began and grew. It is centrally located and it has a naturalistic environment with many woodlands, trails, parks and outdoor areas together with indoor recreational and entertainment facilities.


I realize the current economic realities in NB, in Canada and the world work against any consideration of the type of facility that is needed. But economic realities always weigh in and have done so over the last decade that I have been involved with trying to advocate for a reality based, evidence based residential facility for autistic adults in need of a permanent home when their parents age and pass on. Ever present too, and just as big an obstacle, is the belief that citing "community" cliches will actually help those who are most in need of help.


I have visited Centracare years ago with the father of a adult autistic son who resided there at the time. He told me of seeing his son dressed in a hospital "johnny shirt" in a room with a cement room and a liquid substance on the floor. I did not know whether to believe him or not until we arrived and again found him in the same room in the same condition. At least one autistic youth and one adult have been sent to a facility in Maine at considerable financial expense and considerable emotional stress for families living on the other side of an international border. I have had parents email me to tell me of their young adult autistic children hitting their head and having to wear self protective head gear at home while parents struggled to provide care. I was told of an autistic adult living on a general hospital ward for a time in Saint John. I am aware, as are we all, of the autistic youth who lived for a time on the grounds of the Miramichi youth correctional facility before being sent to the a Spurwink facility in Maine.


In early intervention and in school services both Liberal and Conservative governments have been of some assistance, have helped to provide needed, evidence based services to some extent. I ask that the same spirit be applied to developing a modern, decent residential and treatment facility for severely challenged autistic adults in New Brunswick. Nothing has been done for years. We have failed New Brunswick's severely challenged autistic adults. Community rhetoric has not helped. Autistic adults need a place to live. My son will need a place to live with access to professional autism care and autism trained staff, a place with educational and recreational dimensions to provide a decent life for him and others like him.


Please advise whether your government is considering helping autistic adults and is working on a modern, reality based model. If that is not in the works, please say so straight up.


Respectfully,


Harold L Doherty,
Conor's Dad


1. A Place for Conor What resources are available when you’re growing up with autism?
2. Autism services needed for N.B. adults
3. N.B. can be a leader in autism services
4. Autistic boy kept in New Brunswick jail, Toronto Star, October 19, 2005

Millions for Woodstock Civic Center But No Time to Answer a Simple Adult Autism Care Question

Catherine Lord Confesses: DSM-5 Autism Spectrum Disorder Intended To Exclude Intellectually Disabled

"Catherine Lord, the director of the Institute for Brain Development at NewYork-Presbyterian Hospital, and a member of the committee overseeing the [DSM-5 autism] revisions, said that the goal was to ensure that autism was not used as a “fallback diagnosis” for children whose primary trait might be, for instance, an intellectual disability or aggression." [Bracketed terms added for context - HLD]

- Dr. Catherine Lord, as reported by NYT High Functioning Autism/Asperger's reporter, Amy Harmon, A Specialists’ Debate on Autism Has Many Worried Observers, New York Times, January 20, 2012

The above reference to, and quote of, Dr. Catherine's Lord about the DSM-5 committee's intent to exclude intellectually disabled from further autism diagnosis was important journalism by Amy Harmon even if it was simply an inadvertent by product of her exploration of HFA and Asperger's in the DSM-5's New Autism Spectrum Disorder.  Ms Harmon has shown considerable interest in HFA and Asperger`s while largely ignoring those severely affected by autism disorders.  To here credit her article about worried observers relates primarily to those high functioning groups but did cough up the above confession by Dr. Lord.  Ms Harmon consistent with her slant towards covering High Functioning Autism  then moved on and glossed over the admission by Dr. Lord.  In Amy Harmon World as in Dr. Catherine Lord`s DSM-5 the intellectually disabled just don`t count and will be excluded from the Brave New Autism Spectrum Disorder.

To my knowledge I am one of the first, and few, persons to comment on the intentional exclusion of the intellectually disabled from the autism spectrum in the DSM-5; despite their historical presence on the "spectrum"` as a vast majority of those with classic Autistic Disorder. One person who pursued my concerns was Lisa Jo Rudy, then of the About.com autism site, who obtained the following information from Dr. Bryan King of the APA's DSM-5's Neurodevelopmental Work Group:

"My Question for Dr. King


There seems to be a desire to remove people with "Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays" from the ASD category. Does this mean that a child with Mental Retardation (also called Intellectual Delays) no longer qualify for an Autism Spectrum diagnosis? Would that person wind up dually diagnosed with Intellectual Development Disorder and social communication disorder rather than with an ASD diagnosis?


His Response


There is no explicit desire , however, by creating more specificity we believe that people may be given diagnoses that better capture their individual conditions. The qualifier above about general developmental delays ensures that the social communication deficits are more specific, and also potentially allows for earlier diagnosis if appropriate.


Just as typically developing infants and toddlers are able to engage in very rich social communication and interaction across contexts, appropriate to their developmental level, so too most individuals with intellectual delays or disabilities are also able to communicate. On the other hand, significant deficits in social communication in toddlers may suggest the presence of autism. What the criterion above is meant to ensure is that clinicians take into account what is typical in terms of social communication abilities at a given age or developmental level, and not assume, for example, that a lack of social perception in a teenager with intellectual disability not automatically suggest the presence of autism. As is currently the case, some individuals with Down Syndrome may also meet criteria for autism; but most will not."

When I read Dr. King`s reply to Lisa`s question I was skeptical. I had difficulty rationalizing his answer with the express wording of mandatory criterion A of the DSM-5`s new Autism Spectrum Disorder which requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays"

Dr. King stated that it was not the DSM-5 committees`s intent that children with mental retardation (now to be known as Intellectual Developmental Disorder) would be disqualified from receiving an Autism Spectrum Disorder diagnosis.  Dr. Catherine Lord`s appears to say exactly the opposite.  Dr. Catherine Lord takes issue with the Volkmar data base and study that has prompted the current fears over exclusion of persons with HFA and Asperger`s from a DSM-5 Autism Spectrum Disorder diagnosis.

Dr. Lord is undoubtedly correct and Amy Harmon and the New York Times need not worry.  The DSM-5 targets for exclusion from the new ASD diagnoses are not those with HFA and Asperger`s.  Those who will be excluded are the invisible autistics who are not featured in the NYT or in Hollywood movies.

Catherine Lord Confesses: DSM-5 Autism Spectrum Disorder Intended To Exclude Intellectually Disabled

NB Ombudsman's Centre of Excellence is a Fantasy That Will Not Fill Residential Care and Treatment Needs of Severely Autistic Adults

The Bricks and Mortar Office of the Ombudsman 548 York Street,

Fredericton,New Brunswick, at the Staying Connected consultations,

in which I participated, Ombudsman Bernard Richard and NBACL

President Clarence Box both dismissed Long Term Residential

Care and Treatment Facilities for Autistic Youth and Adults as "Bricks and

Mortar Solutions" The Centre of Excellence which the Ombudsman's

office has promoted so heavily is not an actual center, it is a

bureaucratic fantasy which will not provide a place to live and receive 

treatment for severely autistic youth and adults.

As a former Autism Society New Brunswick representative I  met with government officials on several occasions to stress the need for evidence based, secure, autism specific residential care and treatment facilities for New Brunswick adults with severe autism disorders.  Invariably government officials in both Liberal and Conservative administrations have declared that they were studying the issue but they have never taken concrete action to establish a modern, decent, facility with autism trained staff or with access to ongoing autism treatment.  I have on this site  posted several times over the past 6 years about the lack of adult residential care and treatment facilities for autistic adults.  

Still nothing happens. Part of the problem lies with government and part of the problem lies with the community living ideology which governs education, health and social development departments and institutions like the NB Human Rights Commission and the NB Ombudsman's Office under its various names.  All of these institutions talk about providing care in the community and talk about temporary care for the more severely autistic in more institutional settings. But they have no grasp of the realities facing severely autistic adults, none whatsoever, and NB youth and adults with autism pay the price for their autism ignorance.

Since my last post and email on this subject CBC New Brunswick reported the situation of an 18 year old New Brunswick autistic man who checked himself out of Centracare in Saint John in winter weather wearing only a hospital johnny shirt:

"The family of an 18-year-old with autism, who's currently being housed at the Salvation Army hostel in Saint John, is calling on the province to do more to help people in his situation.

The young man, whom CBC News has chosen not to name, has mood swings and behavioural issues, including violent outbursts.

He has been unable to remain in a group home and last Sunday, he checked himself out of the long-term mental health facility Centracare, wearing only a Johnny shirt in the subzero temperatures."

This 18 year old autistic man unfortunately falls squarely in the middle of the gap that exists in New Brunswick between group homes and psychiatric hospital care. CBC News deserves some credit for reporting this story but in their report they asked for feedback from former Ombudsman Bernard Richard. Mr. Richard is a very courteous and gentlemanly career politician and bureaucrat but he is also a person who lacks any obvious understanding of the realities faced by youth and adults with severe autism disorders.  In his comments on this Saint John "johnny shirt" incident Mr. Richard talked about the alleged "centre" recommended by the Complex Needs process which he oversaw:

""I've been generally encouraged," he told CBC on Wednesday."They are feeling that they need to do something and I am hopeful that they will."

In 2008, in his report called Connecting the Dots, Richard recommended a centre of excellence be dedicated to research and the provision of services to children with very complex needs, including the establishment of community-based residential capacity for them.

The centre was one of 48 recommendations in the report, which was a two-year undertaking and included a review of seven individual complaint files relating to youth with very complex needs.

Richard called for a centre of excellence again last year in report called Staying Connected, which he co-authored as co-chair of a task force on a centre of excellence for children and youth for complex needs.

"When a placement outside of the home is required for assessment or step-up intervention purposes, the centre of excellence will help ensure that clinicians, educators, social workers and all interveners work together and from the same page in meeting the child’s needs," the report said.

"The millions expended to date for step-up interventions abroad could benefit many more children if they were spent here in New Brunswick; those expenditures could develop expertise, services and employment in communities around our province."

The first point to note is that Mr. Richard is talking about children not older youths and adults.  The second is that he is talking about community based residential capacity for these children.  Mr. Richard's comments, to the extent that they are referring to autism disorders, do not demonstrate any understanding of the very serious, long term, and in some cases, permanent challenges facing many adults living with severe autism disorders.  For such adults assessment is not an issue. Nor is a hospital in patient out patient model the answer. Many severely autistic adults need facilities in which to live permanently with autism trained staff and access to expert autism therapeutic and medical care on an ongoing basis.  

I was involved with the Staying Connected review process and I spoke about the need for permanent residential care and treatment placement facilities with autism trained expert staff. My comments carried no weight with the Staying Connected process panel which was ideologically opposed to any attempt to establish centres. The Ombudsman's office has never been a strong advocate for autistic children and adults in New Brunswick.  Positive improvement in early intervention and school services were obtained by committed parents fighting on behalf of their children. The Staying Connected consultations actively discouraged discussion of actual facilities, or "bricks and mortar" solutions for the serious challenges facing New Brunswick adults with complex needs including the very complex needs of severely autistic NB youth and adults.

Unfortunately, when it comes to adult autism care, the Ombudsman's office is not just  an irrelevant bystander as it was for preschool and school autism services.  It has become part of the opposition to providing decent modern and adequate residential care and treatment facilities.

The Ombudsman's office is not part of the solution when it comes to adult autism residential care and treatment in New Brunswick. As a bureaucracy closely tied to  the community living leadership which has such great influence with New Brunswick governments, and which vigorously opposes residential care and treatment facilities for autistic adults, it is part of the problem, a very big part of the problem. 

NB Ombudsman's Centre of Excellence is a Fantasy That Will Not Fill Residential Care and Treatment Needs of Severely Autistic Adults

2011 Autism Progress or Back to the Future?

Was there any progress in addressing autism disorder issues in 2011?  In the humble opinion of this father of a severely autistic 16 year old there was very slight progress on the research front, very slight, and that progress was more than offset by the regression on other fronts particularly in the area of autism awareness.  

The hard core reality is that in the six years since I began this blog and in the nearly 14 years since my son was diagnosed with autistic disorder no substantial progress has been made towards curing, treating or even understanding autism disorders.  The displacement of the original more severely autistic population with very close links to intellectual disability by Aspergers diagnosed, in some cases self diagnosed, persons with very little, if any impairment in daily life functioning has confused the public, confounded autism research and taken the pressure off of autism service providers.  

The severely autistic are still under represented in autism research which now searches Korea and the rest of the world for those who are so high functioning that they are not even noticed as having a disorder in highly structured, organized societies. Those who are barely autistic, if at all, still purport to speak on behalf of those on the spectrum who are severely affected by autism. Governments feel less and less pressure to provide services for those who most need them because autism has become autism fluffy and lite in the New York Times and other influential mainstream media outlets.  

The original severely autistic remained invisible in 2011 and with the DSM5 removal of the intellectually disabled from the autism spectrum will be forgotten completely.  Hidden out of sight in institutions, they are now out of the public mind completely which instead sees highly intelligent, highly functional "geek" populations,  as representative of autism.  Autism has become autism lite and fluffy. Autism dark and heavy remains hidden and forgotten.

For those seeking treatments and cures for autism, for the original, invisible, severely autistic population in 2011 it was just another year like those before,  just more back to the future. 

2011 Autism Progress or Back to the Future?