Not Accounted For By General Developmental Delays: In DSM-5 Era Life for Autism's Invisible Vast Majority Is About To Get Much Harder

DSM-5 Autism Spectrum Disorder Will Exclude 

Autism's Vast Majority  Of Intellectually Disabled

While the New York Times, the CBC and other mainstream media giants debate the DSM5's potential exclusion of high functioning autistic persons from autism diagnosis barely a whisper is heard about the express exclusion of autism's vast majority of intellectually disabled. The exclusion of the intellectually disabled from the DSM5's New Autism Spectrum Disorder is not a potential effect, it is the express and intended effect of the language of mandatory criterion "A" as recently confessed by Dr. Catherine Lord.

"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, and manifest by all 3 of the following:"

Dr. Lord made it clear in her interview with the NYT that the APA's primary means of addressing the autism epidemic wasn't by removing high functioning autism from the DSM5 for that matter by conducting research into the environmental causes of autism. The APA will challenge the autism epidemic by redefining autism's vast majority of intellectually disabled out of the New Autism Spectrum Disorder:

"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]


Exclusion Criteria - Not Accounted For By General Developmental Delays


Dr. Lord's confession is confirmed by the words "not accounted for by general developmental delays.  The "not accounted for by" is recognized as an exclusion criteria formula used in the current DSM-IV.  It is not controversial or contentious  (particularly given Dr. Lord's confession) to read those words, as used in the DSM-5, as excluding autism diagnoses in cases involving intellectual disability or as it is also known in the DSM-5: A00,  Intellectual Developmental Disorder. 


The mainstream media, led by the NYT, is obsessed with the very high functioning persons at the barely autistic end of the current autism spectrum.  Autism researchers also focus on this point.  Very few display any interest in those most severely affected by autism.  Instead of addressing the many serious and harmful effects confronting those on the autism spectrum who are intellectually disabled the APA simply redefines autism ... and defines away the most serious problems currently associated with autism as illustrated in this article on wsiltv.com: 

"Working with young autistic children is key to helping them become more functional in society.

"They have difficulties interacting with people with their social communication," explains Kirsten Schaper, the Autism Center Clinic Director in Carbondale.

The Autism Center at Southern Illinois University works with about 16 autistic kids a semester, far less than the number of people that come seeking treatment.

"I'd say 90 percent of the referrals to the center do not have autism," says Schaper.

Schaper says mis-diagnosis of autism is rampant in the U.S., partly because the criteria to diagnose the disorder are vague and subjective.

"We do have a lot of referrals for kids for challenging behaviors, tantruming, head-banging, aggression, self-injury, but these are not characteristics of autism spectrum disorder," Schaper explains.

Now a group of autism experts are tightening the criteria for identifying the disorder by stating specific characteristics to look for. Some parents fear their child, who has mild symptoms that were diagnosed as autism, will no longer get treatment under the new rules. But Schaper says the new criteria should, actually, better help those kids.

"Kids who have maybe an intellectual disability, or a language disorder, or maybe a behavior disorder, rather than autism, these kids will not be identified as having autism, and hopefully get the correct diagnosis, and therefore the correct treatment for whatever disorder they're having." [Bold Emphasis Added - HLD]

Hopefully get the correct correct diagnosis, and therefore the correct treatment for whatever disorder they're having?  NONSENSE. The APA is changing the rules  so psychiatrists, psychologists and other health care professionals can ignore the most serious cases of autism and dump autism's vast majority in the invisible category ... now to be known as Intellectual Developmental Disorder. In the US where more and more states are requiring insurers to provide coverage for autism the financial hit they experience will now be minimal ... a permanent gift from the American Psychiatric Association.

Frankly, as a father of a 16 year old son with autistic disorder and profound developmental delays, my trust in the psychiatry profession is declining rapidly with each passing day.  Life will be easier for the members of this profession who will now address the autism challenge by ignoring the most difficult cases.  For autism's vast majority of intellectually disabled though, they will now be even more invisible, more forgotten, more ignored as they are dumped in the Intellectual Disabled Development bin.  Life for autism's vast majority is about to get much, much harder in the era of the DSM-5's New Autism Spectrum Disorder.

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

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.

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. 

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. 

Autism, Obesity and Medication: Our Run, Jump, Fly Boy Says NO THANK YOU!

Run, Jump, Fly Boy 2007

Run, Jump, Fly Boy 2011

There are many news reports concerning possible connections between obesity and medications prescribed for children and adults with autism and other developmental disorder.  Those reports help stiffen our resolve to avoid medications for our autistic son Conor, our Run, Jump, Fly Boy.

In the article In Treating Disabled, Potent Drugs and Few Rules  the NYT examined the psychotropic medications given with few guidelines to children with developmental disorders and the possible harmful effects, including obesity, anxiety and in some instances enlarged breasts in boys requiring surgery, that can result. The NYT article also quotes sources indicating that the medications do not treat the underlying conditions.

In Texas Johnson & Johnson is soon  to go on trial in respect of its practices in marketing Risperdal a medication often prescribed for autistic children. The AP article Texas suit against J&J over drug to go to trial reports that Risperdal and similar antipsychotic drugs have been associated with  increased risk of strokes and death in elderly dementia patients, seizures, major weight gain, onset of diabetes and potentially fatal high blood sugar.  

A UK report Parents' tragedy as autistic son found dead in Haringey care home tells of parents' grief at learning that their 20 year old son, who had been placed in a group home 15 months earlier and during his time there had been prescribed chloropromazine, had died of an obesity linked heart attack after being found faced down in his room hours earlier:

"Coroner Dr Andrew Walker of Barnet Coroner’s Court ruled the 22-stone teenager’s death was due to a heart attack linked to obesity at an inquest on Wednesday last week (January 4). But Harry’s parents, Jennifer Horne-Roberts and Keith Roberts, claimed strong anti-psychotic drugs he was given without their knowledge were responsible. They claim his three stone weight gain during 15 months in care was due to the drug chloropromazine and that the boisterous 6t-teen was given the drugs without their knowledge.

Before he moved to the care home, Harry had been exuberant and regularly took part in sports and outings. His parents took the heartbreaking step to put Harry into care to increase his independence, but claimed during the inquest they were instead locked out of his treatment with catastrophic consequences. They only learned that he was on the drug when a carer let the information slip in March 2009 and then wrote four letters to Harry's psychiatrist without receiving a reply.

During the inquest psychiatrist Dr Sujeet Jaydeokar said: There was a breakdown of communications."

In our son's case, shortly after Conor was originally diagnosed his pediatrician, who has considerable expertise with children with autism disorders, recommended that we avoid medications for Conor ... as long as possible.  So far we have avoided resort to medication even as Conor, soon to turn 16, and standing a solid 6'1" in height (as measured by hospital staff in a recent visit),  continues on the sometimes challenging journey known as adolescence.

The first combined photo above is from 2007 and the next two are from 2011.  Our son loves to run, jump and fly when we are out outdoors on our local trail systems (and sometimes indoors).  As long as we can we will avoid any medication for Conor as his pediatrician recommended so many years ago.  I do not want to see him lose the joy he obviously experiences when he decides to Run, Jump and Fly.

I don't want to take Conor's joy of movement from him and I don't want to see the physical and mental harm that appears to have been inflicted on some autistic children and adults by medications. I want our Run, Jump, Fly Boy to enjoy life and his love of movement, for as long as possible. So far we have not resorted to medication.  We have instead adopted a behavioral management approach, as recommended sources in the NYT article. At school which he loves dearly, he works with a UNB-CEL Autism Intervention trained Education Assistant using the ABA principles recognized by several credible authorities.  For now at least our Run Jump Fly Boy can continue to be who he is, and continue to enjoy his love of movement. 

Joy of Conor 2011

Just a tiny bit of the joy that Conor brought to his Mom and Dad every day in 2011.

A Place for Conor? New Brunswick and Its Community Cliché Addicted Bureaucracy Have Failed Severely Autistic Adults

The Ombudsman and the community living bureaucracy in New Brunswick can Connect all The Dots and hold as many cheer leading sessions as they want but none of them have done anything to address the need for decent residential care and treatment facilities for severely autistic adults in New Brunswick. 


When it comes to the need for modern properly staffed residential care and treatment for New Brunswick adults with severe autism disorders our community living cliché addicted government institutions have prevented all progress.

In 2011 Karissa Donkin, a journalism student at St. Thomas University met with me and Conor before addressing these issues head on in a well written piece of journalism: A Place for Conor.  For me, and for my son Conor, this was the autism story of 2011.  It asks a question I asked at a meeting of the Autism Society New Brunswick last year. It asks a question I have raised, with other parents of autistic children, in several meetings with New Brunswick government officials over the past 10 years. It is a question I have asked of the community living bureaucracy that has dominated the New Brunswick Human Rights Commission, the Ombudsman's Office and the Departments of Education, Health and Social Development.  Last year I raised the issue of adult residential care and treatment during the Ombudsman's public consultations. I might as well have been singing to my self in the shower. 

I participated in the center of excellence consultations organized by the Ombudsman's Office  in connection with the  Connect the Dots campaign. It was an orchestrated charade with the same cliches about "community" and "inclusion" and expressed hostility towards "bricks and mortar" centers that have prevented progress on evidence based autism issues for decades in New Brunswick. It was clear from the comments of those at the head table as well as NBACL head Clarence Box who moved to the table I was seated at that there would be no real centers considered during the consultations.

As we move forward in 2012, the need for a decent residential care and treatment system for NB adults with autism disorders remains as it has over the past decades.  The past several decades have been dominated by a community living  bureaucracy  whose ideas were framed decades ago and which has not moved on to address the need for modern evidence based residential care and treatment needed by some people, including my 16 year old severely autistic son.  

With no disrespect intended the fact remains that the community living bureaucracy, including the current occupant of the Ombudsman's office, doesn't have a clue about what is required to move severely autistic adults out of psychiatric hospital and general hospital ward care and into modern residential care and treatment facilities.  They refuse to consider meaningfully any ideas which conflict with their tired community living ideology, an ideology which began around the time my childhood heroes Neil Armstrong and Buzz Aldrin walked on the moon. It is an ideology whose adherents have remained inflexible and dogmatic in their thinking. It is an ideology whose adherents have failed, despite years of the highest level of influence in our government institutions, to help the most severely disabled autistic adults.

New Brunswick has a need for autism specific residential care and treatment facility. Our province has answered the call in early intervention and to some extent in providing autism specific education services in our schools. It has been accomplished despite the determined opposition of those with a near religious belief in community living cliches.  UNB-CEL Autism Intervention and the Stan Cassidy Centre in Fredericton have developed some excellent early and school years intervention services. We have natural living environments in the capital area. There is no excuse for not beginning a serious effort to construct a professional modern living centre for autistic adults in our capital region. None at all.

Karissa Donkin's article, A Place for Conor:

"A Place for Conor

What resources are available when you’re growing up with autism?

Fredericton’s Second Cup is loud and busy on a Tuesday afternoon and Conor doesn’t like it.


Conor is 15 years old and looks the part of a boy becoming a man. He’s nearly six-feet tall and growing sideburns. His blue eyes are staring out of the coffee shop’s window, where he’s watching a raging snowstorm blanket the downtown streets.


Every few minutes, when the noise gets to be too much to handle, Conor lets out a small scream and bats his ears with his hands.


The only person who can hold Conor’s attention is the man sitting across from him with the same blue eyes.


Since Conor was diagnosed as severely autistic and intellectually disabled 13 years ago, Harold Doherty has worked tirelessly to lobby the government to better support autistic children like his son. For the past five years, he’s operated a blog called Facing Autism in New Brunswick.


“There were no services here in New Brunswick … People had to stay active. There was a group of parents who did and I was one of them.”


But 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.

Not only is the current system not comprehensive enough for adults with varying degrees of autism, but it’s also expensive, says child psychologist and autism expert Dr. Paul McDonnell.

Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or out of province.

“It’s fairly expensive to put people in group homes and if you have to send people out of the province then it’s much, much more expensive,” McDonnell said.

“If they’re placed far away from their families, that creates a lot of hardship as well. A lot of people aren’t functioning at the level they could. They’re simply not having the quality of life they should be having.”

McDonnell thinks the province needs to train people to be prepared to deal with adults with severe behavioural challenges.

“They should have stimulating recreational, educational programs. That is absolutely essential.

“That’s what we need to aim towards is setting up a system where we have some really well-trained people.”

***

Every school night before Conor goes to bed, he packs his lunch and puts it by the door.

Conor is in Grade 9 at Leo Hayes High School and loves getting up and going to school every day.

In elementary school, Conor used to come home with bite marks, a sign of frustration from being placed in a regular classroom. Now, Conor studies in a resource room at the high school.

A severely autistic teenager like Conor thrives on the structure of the school day and he struggles when he doesn’t have that structure.

“When school days are missed for different reasons, it’s challenging for him,” Doherty said.

Doherty worries about how to manage Conor’s behaviour when he’s finished with the public school system.

“It’s difficult as parents to give him the structure that he gets at school.”

Many members of the Autism Society of New Brunswick are parents who share similar worries. Doherty organized the society’s first meeting in two years in January.

The parents have been lobbying the government to reform autism services for years. They started out lobbying for services for the youngest kids and saw an autism intervention training program developed at the University of New Brunswick’s College of Extended Learning in 2004.

“We know that wasn’t going to help our children. My son never got the benefit of those (pre-school) services. But it was the right thing to do,” Doherty said.

The parents moved on to advocating for better services at the grade school level and have spent the last couple of years focusing on adult services.

“It’s tougher to get that same emotional response when you’re talking about adults.”

Many of those same parents got burnt out trying to manage careers, autism advocacy work and their families, Doherty said, and the society was disbanded for two years.

But with the clock ticking and Conor approaching adulthood, Doherty knew it would be necessary to have a society to communicate with government.

“Because we don’t look for compensation, we’re not in a conflict of interest. We can’t be pressured into representing our children to the fullest of our ability.

“That’s why we were able to keep pushing ahead when other people pulled back. We know how important it is.”

McDonnell, who has worked with parents to help them understand autism, knows how important it is for parents to be advocates.

“If you don’t (advocate), you simply won’t get the services.”

***

Six weeks ago, Conor had a meltdown in the middle of the night.

Around 2:30 a.m., Doherty woke up to find his son harming himself. Clearly frustrated, Conor was slapping himself in the face and head.

“I tried to talk him out of it and manage his behaviour and it didn’t work this time.

“I tried to grab his arms to restrain him from hurting himself … he lunged forward and gave a good bite on my bicep.”

This is a rare example of a time when communication broke down between Doherty and his son, making it hard for him to manage his son’s behaviour.

Doherty suspects Conor’s frustration that night came from not understanding the teenage changes going on in his body.

The incident serves as a reminder of Doherty’s race against the clock to ensure his son will be able to live his adult life with dignity.

While Doherty is worried about the future, he maintains he isn’t going anywhere soon. Spending time outdoors and running around with Conor, who has a lot of energy, is keeping him healthy and young in body and spirit.

“(Conor) has his frustrated moments but those are far outweighed by the moments he’s just happy and smiling a lot.”"