Autism Residential Care in NB from 2005-2010: Nothing Has Changed

I have been publicly proud of this beautiful province of New Brunswick when it comes to helping autistic school children and pre-schoolers.  For those age groups I would stack New Brunswick's autism services and real accommodation up against any jurisdiction in North America, even better funded jurisdictions like oil rich Alberta and traditional Canadian economic hub Ontario.  When it comes to taking care of autistic youths living with the challenges of autism and Aspergers though New Brunswick is in very bad shape and has absolutely nothing to brag about.  

In New Brunswick we have an ad hoc system of residential care which has seen New Brunswick adults with autism shipped out of province far from families who love them. We have seen some NB adults with autism living on a hospital ward (information conveyed to me but unconfirmed). We have seen NB autistic youth and adults whose aggressive behaviour even with family members end up in jail facing assault charges.  On some occasions family members are urged by Social Development workers to press charges since the Criminal process will often result in a psychiatric assessment not otherwise available from public funds. The most severely affected by autism reside in a psychiatric hospital in the non central, Northwestern corner city of Campbellton again far from most family members living out their lives. I have visited that hospital and saw caring people in charge but people who have to deal with limited resources.

Things to day are not much different than they were 5 years ago for New Brunswick's autistic adults severely affected by autism who require residential care and treatment. 4 1/2 years ago New Brunswick was infamous for housing an autistic youth charged with no wrongdoing on the grounds of a youth correctional center in Miramichi pending his transfer to the Spurwink facility in the State of Maine.  As the Toronto media headlines faded away, so too did the apparent willingness of government to provide a decent residential care system for New Brunswick adults with autism. I have been part of a contingent of autism representatives that has surveyed the needs of our autistic population and presented our suggestions to government to consider on severeral occasions.  Still no action.  Still nothing to help our autistic  youths and adults in need of decent residential care and treatment.

Following is a Toronto Star article on the incident 5 years ago that saw the autistic youth residing on the grounds of a correctional facility because there was nowhere else for him to go in the Province of New Brunswick.

Autistic boy kept in New Brunswick jail

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

The political standings have changed during the past 5 years in New Brunswick.  Mr. John Foran has been part of a Liberal government in power for almost 4 years now.  The Liberal government of Premier Shawn Graham,  especially  former Education Minister Kelly Lamrock, has done much to improve the lives of New Brunswick autistic students and pre schoolers.  But for New Brunswick's autistic youth and adults in need of decent residential care and treatment it is a different story.

5 years ago things were desperate. Little has changed since then for New Brunswick's autistic youth and adults who have been so badly in need, for so long,  of a modern comprehensive residential care and treatment system.

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Will US Injunction Help Focus on Residential Care Needs of Persons with Autism in New Brunswick?

In the attached news release the US Department of Justice  informs that a preliminary injunction is being sought to keep children from being admitted to a development center in Conway Arkansas :

 The United States has concluded that children at the facility are particularly vulnerable given allegations that CHDC residents are subjected to dangerous medication mismanagement and harmful, unnecessary restraints.  In recent years, at least three CHDC residents have died, suffered possible permanent organ damage or been at risk of hemorrhaging to death because of psychotropic medication mismanagement.  CHDC also continues to utilize 41 different forms of mechanical restraints on both children and adults, including straitjackets, restraint chairs and papoose boards - practices that have been largely barred from other facilities for years.

"The State has a responsibility to ensure the safety of individuals who reside in state-run facilities, and we must act swiftly when the state does not live up to that responsibility," said Thomas E. Perez, Assistant Attorney General in charge of the Civil Rights Division. "Individuals with developmental disabilities have the right to live in the most integrated setting appropriate to their needs, and states must take swift action to ensure that all individuals are accorded these basic rights."

In addition to barring inappropriate restraints and requiring safeguards to prevent dangerous medication practices, the motion seeks to require that the state remove barriers to the provision of supports and services in the community, so that individuals with disabilities, including the approximately 50 children at CHDC, are not forced to choose between an unsafe institution and the denial of necessary services in a more integrated setting.

The  proceedings against the State of Arkansas,  and against the facility in Conway Arkansas,  could  have an impact in Canada;  including here in New Brunswick.   New Brunswick has been examining its residential care system for youths and adults with disabilities for several years but to date very little action has been taken.      Approximately five years ago a youth with autism was  housed temporarily on the grounds of a youth correctional center at Miramichi pending admission to the Spurwink facility in neighboring Maine.  I have,  since starting this blog  3 1/2 years ago,  received unconfirmed  information that an autistic person was essentially living on the floor of a general hospital in Saint John New Brunswick.  

I have visited the premises of the psychiatric hospital in Campbellton New Brunswick where persons with autism and disabling mental health conditions currently reside in New Brunswick.   It is not a future I want for my son even though the persons running the facility who I met,  and who were generous with their time, showing me around the facility, impressed me with their knowledge, compassion and attempts, within the existing system and  resources,  to care for the residents.    

I would rather see my severely autistic son reside in Campbellton once I am deceased than live in a facility lacking properly trained staff and security.  But it is not what I want for him.  I want very desperately to know that he will live in a secure facility properly staffed and centrally located. A Fredericton location would enable the operators of the facility  to more readily access the professional, academic and government resources available in Fredericton and provide residents with access to the community and the wonderful natural environment with which we are blessed in the Fredericton area.

Representations have been made to the Province of New Brunswick from autism community representatives, including me, and from several professionals involved with actually helping autistic youths and adults in New Brunswick,  asking the Province to provide a modernized residential care system for autistic youth and adults.  The representations have been made formally and informally, directly and through the media, for several years but, to date, there has been no sign of progress.  

New Brunswick needs a modernized, secure residential/treatment facility to care for those most severely affected by autism and developmental disorders located centrally in Fredericton where the facility would have access to the professional and academic resources of the Stan Cassidy Center and the University of New Brunswick.   For those persons with autism whose abilities permit New Brunswick needs modern, community based facilities in each area of the province.

Hopefully developments in Arkansas will focus attention on the need to take action   to  provide modernized,  residential care facilities appropriate to the needs of autistic children, youths and adults in New Brunswick.  

Hopefully.

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Department of Justice

Office of Public Affairs

FOR IMMEDIATE RELEASE

Tuesday, March 9, 2010

Justice Department Files for Immediate Relief Regarding Conditions at Conway Human Development Center, in Conway, Arkansas

The Justice Department today asked the Federal District Court for the Eastern District of Arkansas to take immediate action to prevent children from being admitted to the Conway Human Development Center (CHDC) in Conway, Ark. The department’s motion for preliminary injunction aims to prevent the segregation of children with developmental disabilities in dangerous conditions and to address accusations of imminent and serious threats to the safety of the facility’s more than 500 current residents.

In January 2009, the Justice Department filed a complaint against the State of Arkansas to enforce the federal requirement that individuals with disabilities be served in the most integrated settings appropriate, and to remedy unconstitutional conditions at CHDC. Information collected through discovery since the filing of the complaint has led the department to conclude that residents face increasing and grave risk of harm with each day that deficiencies are ignored, and that Arkansas fails to serve individuals in the most integrated setting appropriate to the residents’ needs.

The United States has concluded that children at the facility are particularly vulnerable given allegations that CHDC residents are subjected to dangerous medication mismanagement and harmful, unnecessary restraints. In recent years, at least three CHDC residents have died, suffered possible permanent organ damage or been at risk of hemorrhaging to death because of psychotropic medication mismanagement. CHDC also continues to utilize 41 different forms of mechanical restraints on both children and adults, including straitjackets, restraint chairs and papoose boards - practices that have been largely barred from other facilities for years.

"The State has a responsibility to ensure the safety of individuals who reside in state-run facilities, and we must act swiftly when the state does not live up to that responsibility," said Thomas E. Perez, Assistant Attorney General in charge of the Civil Rights Division. "Individuals with developmental disabilities have the right to live in the most integrated setting appropriate to their needs, and states must take swift action to ensure that all individuals are accorded these basic rights."

In addition to barring inappropriate restraints and requiring safeguards to prevent dangerous medication practices, the motion seeks to require that the state remove barriers to the provision of supports and services in the community, so that individuals with disabilities, including the approximately 50 children at CHDC, are not forced to choose between an unsafe institution and the denial of necessary services in a more integrated setting.

Between June 1, 2007, and Oct. 1, 2009, a CHDC resident was more likely to die than be discharged to a more integrated setting. On average, CHDC residents die at the age of 46.5 years, compared with the average age of 72 years for other individuals with developmental disabilities living in institutional settings. The number of individuals with developmental disabilities who are waiting to receive community-based services is on the rise in Arkansas, with over 1,300 currently waiting to receive services through the Centers for Medicaid and Medicare Services Alternative Community Services waiver program, with an average wait time of approximately two and a half years.

The Civil Rights Division is authorized to conduct investigations under the Civil Rights of Institutionalized Persons Act (CRIPA) and the Americans with Disabilities Act of 1990 (ADA). CRIPA authorizes the Attorney General to investigate conditions of confinement in certain institutions owned or operated by, or on behalf of, state and local governments. In addition to residential facilities serving persons with developmental disabilities, these institutions include psychiatric hospitals, nursing homes, jails, prisons and juvenile correctional facilities. The ADA authorizes the Attorney General to investigate whether a state is serving individuals in the most integrated settings appropriate to their needs. Please visit http://www.justice.gov/crt to learn more about CRIPA, the ADA and other laws enforced by the Justice Department’s Civil Rights Division.

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Attorney General

Autism Speaks Welcomes To Its Board Autism Cure Opponent John Elder Robison

Autism Speaks has responded to my comment concerning publication of my comment on the official Autism Speaks blog site about the views of new Autism Speaks board member John Elder Robison.  AS did, subsequent to my initiial comment on this site,  post my questions to new Autism Speaks board member John Elder Robison. Mr. Robison also answered very honestly my questions on the Autism Speaks blog although I am very concerned about what his answers portend for the future direction of Autism Speaks.

Mr. Robison is a very high functioning person with Aspergers Disorder of whom   Autism Speaks per Dr. Geraldine Dawson has announced:

"It is essential that  our grant funding reflects the needs and perspectives of the community we serve, namely, people with autism spectrum disorders. We are very pleased to welcome John to our scientific review boards. His insight and skills will prove invaluable."

Mr. Robison is, like Ari Ne'eman,  a very high functioning person with an Asperger's Disorder diagnosis.  Autism Speaks, as stated in its announcement,  feels that Mr. Robison's  Aspergers condition permits him to offer insights on behalf of all persons with autism spectrum disorders.  The autism spectrum, at least until the DSM 5 comes into effect, includes low functioning persons with Autistic Disorders. At least 75-80% of persons with Autistic Disorder have been estimated by credible studies and agencies such as the Canadian Psychological Association and the CDC to have an Intellectual Disability.  How the unquestionably talented and very intelligent Mr. Robison will offer insights into the life challenges, needs and perspectives of those with Autistic Disorder is not explained  by Autism Speaks and is not a proposition that I accept as the father of a son with severe Autistic Disorder.  Of course, from Mr Robison's perspective he is better suited to represent my son's interests than I am as his father.

On the Autism Speaks official blog site, where Mr. Robison was featured as a guest commentator, he stated:

"I guess I’d counter with a question of my own. What makes you think a person who cares for a disabled autistic person is better qualified to speak on their behalf than me, a high functioning autistic individual?


Caretakers all too often have their own agendas at odds with the people they supposedly care for. They want to read a paper; their charge wants to keep practicing. There is always the temptation to do what’s easiest for the caretaker rather than what’s best for the care-taken person.


There are so many cases of caretakers abusing or neglecting their charges and forcing unwanted therapies on disabled people that I would not be so quick to assume caregivers should have the exclusive right to speak on behalf of the disabled.

That said, I know there are many loving caretakers out there who are truly in tune with what their disabled charges want and need. I would give considerable weight to their opinions if I were in a situation where that was appropriate.

But that is not what I joined the board to do. I am not there to judge anyone else, or speak on anyone’s behalf. I am there to render my own perspective on proposed scientific research and treatments studies, as an autistic person at my particular level of functionality.

A better question to ask might be: Should Autism Speaks seek individuals with a greater degree of autistic disability to serve beside me on these boards. In my opinion, the answer to that is yes and I hope to see that achieved in the future.

The same reader asked a second question: Do you support research aimed at finding cures for autism?

All of the science to date says autism is founded in structural differences in the brain. Differences are stable things. They are not diseases in need of a cure. Taking away the difference is – to me – tantamount to changing to another person. In any case, the idea of such brain configuration is in the realm of science fiction today.

Having said that, I am well aware that autism presents some of us on the spectrum with virtually insurmountable challenges from crushing levels of disability. Others – like me – grow up with milder but still significant components of disability. As much as I recognize my own unique gifts I never lose sight of the “hard parts;” the reason autism is a disability condition.

That is precisely the reason I joined the Autism Speaks boards. I want to bring my autistic perspective to the boards that choose how to allocate our limited research dollars to the best benefit of people living with autism today.

For that reason I fully support research to develop ways to remediate the things that disable us. For example, I have written extensively about research I’m involved with that’s aimed at minimizing social disability by helping us read nonverbal signals that we were previously blind to. I am working with the scientists at Beth Israel Deaconess to develop a study to improve language comprehension and expression in people with autistic speech impairments. I support research to help alleviate the gastric distress that plagues many of us.

However, none of those things are “cures for autism.” They are studies aimed at attacking specific challenges autism presents us. While I have high hopes that we can remediate certain autistic disabilities, I believe our underlying autism will remain. I am not aware of any proposed research that can change that reality.

That’s where acceptance comes in. I want therapies that can help free people from disability. At the same time, I believe we have the right to be recognized in other ways as different but equal in larger human society. Through the efforts of Autism Speaks and all of us within and without the advocacy organizations I hope to see that goal furthered as well."

Without responding, at this time,  to all of the points raised by John Elder Robison in his reply to my questions I do thank him for stating clearly and honestly  that he is opposed to research aimed at curing autism. And  he does pay lip service to representing the perspective of  an "autistic" (Aspergers) person with  his particular level (very high) of functionality) he does not restrict the content of his views to that perspective.  He does not, for example, oppose allocation of research funds for curing Aspergers Disorder alone; he opposes allocation of research funds aimed at curing autism a concept which he derisively dismisses as science fiction.

To the parents of severely autistic children who are seeking autism cure oriented research from Autism Speaks Mr. Robison has an answer.  Hey, some parents and caregivers do not act in the best interests of their charges, their children in the case of parents. Therefor better to let John Elder Robison who doesn't actually know your children or charges, who doesn't share their condition speak on their behalf.

The primary concern I have with Mr Robison's views is his opposition to research aimed at curing autism.  If those are his views then it is a clear indication that Autism Speaks will not be using the research dollars that it solicits, including the money solicited from parents of severely autistic children, to back cure oriented autism research.

For now at least the Autism Speaks official web site under Autism Speaks History still describes itself as  an organization dedicated to finding cures for autism disorders:

"Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatment and  a cure for autism."

In the section titled Our Mission  Autism Speaks states"

"We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism"

It is difficult for me to understand how the mission of Autism Speaks to fund research into curing autism disorders can be reconciled with the views  of its new board member and scientific and research advisor that autism can not, and should not, be cured, that the idea of curing autism is ... science fiction.



Hopefully,  in future news releases,  Autism Speaks will confirm whether it will, or will not, continue to raise funds for research aimed at curing autism.  Hopefully they will do so before they ask members of the public, including the parents of autistic children that AS Board member Robison holds in such low esteem, for contributions.


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Autism Speaks Rejects Questions About Views of New Board Member Robison

I have been appreciative of much of the work done by Autism Speaks in raising autism awareness and funding for autism research. I have also found some Autism Speaks decisions questionable. In particular, I disagree with Autism Speaks decision to provide research funding to Dr. Laurent Mottron who is ideologically opposed to curing autism and who works with anti-ABA activist Michelle Dawson. Reacting to criticism that Autism Speaks does not have a person with Autism on its Board Autism Speaks has responded by appointing a very high functioning person with an Aspergers Diagnosis. The appointment of a person with Aspergers to me represents exactly that ... the appointment of a person with Aspergers not Autistic Disorder not severe autism not low functioning autism.

I am concerned that Mr. Robison and Autism Speaks will, contrary to the wishes of many families with children with Autistic Disorder, move its autism research spending in a more anti-autism cure direction. I am concerned that, with its powerful media connections,  Autism Speaks is moving toward adopting the anti-cure positions of some "Autism" self advocates with Aspergers and High Functioning Autism at the expense of persons with low functioning Autistic Disorder. Autism Speaks has already cowered before  those who view autism as a "different way of thinking", those who oppose research aimed at curing  autism by disassociating itself as much as possible from the "I Am Autism" video produced by parents of autistic children.

I posted a comment on the official Autism Speaks blog guest blog from Mr. Robison asking two questions. The comment did not pass moderation and does not appear on the Autism Speaks blog site. This was the comment I posted:

Mr. Robison do you feel that as a very high functioning person with an Asperger's diagnosis you have any particular insight to offer on behalf of very low functioning persons with severe Autistic Disorder or should the persons who actually care for them and have legal guardianship speak on their behalf?


If I may ask a second question, do you support research aimed at finding cures for autism?

I do not object to the right of Autism Speaks to moderate comments on its official blog site. I moderate comments on this site to prevent spam, profanity, abusive, offensive language and off topic comments aimed at disrupting discussion.  I thought my comment questions were fair and reasonable in the context of Mr. Robison's guest comment introducing  himself on the Autism Speaks blog and I do not see anything offensive or disrespectful in my comments.  Apparently Autism Speaks disagreed.

I respect Autism Speaks' right to moderate its blog site and to reject my comment.  I am not going to throw a hissy fit over Autism Speaks decision to reject the questions I posed for Mr. Robison.

I will take it  though as a sign, a bad sign, about Autism Speaks willingness to address openly some of  the issues that concern me as a parent of a  low functioning  son with  Autistic Disorder. 

Autistic Persons You Don't See on Sitcoms, Reality Shows or Hollywood Movies .... or in the DSM 5

The CDFoakely videos present the realities of severe autism that you don't see on television or movies.

Persons who are severely autistic do not attend colleges for gifted youths, intervene as "autistics" before the Supreme Court of Canada to oppose families seeking government funded ABA interventions for their own children, pose for interviews with CBC, CNN or the New Yorker Magazine or hob nob with Washington politicians and bureaucrats.

Their existence, if they survive snow storms in Nova Scotia, being lost in the woods of Northwestern Wisconsin for a week, being physically abused by  some staff members in a Long Island residential home, living on a hospital ward in New Brunswick Canada, or jumping from an ambulance in South Carolina , is not always pretty and does not usually attract beautiful Hollywood actresses to portray "autism" for the world.

It is the families of the severely autistic who know their realities and speak for them, not the very  igh functioning IT professionals, researchers and  politically vocal university students who declare that autism is a different way of thinking and should not be cured.  It is the families who, day in and day out, care for, and love, their severely autistic family members who know and understand  the realities of severe autism. 

Severe autism may ultimately be whitewashed entirely from the public consciousness by Hollywood movies and the DSM 5.  If severe autism is not obliterated entirely from  public awareness it will be because even the mainstream media, at least at the local level, does report the tragic consequences that sometimes strike the severely autistic.   And because courageous family members will tell the world, and keep telling the world,  the truth about severe autism.

CDFoakley videos continue that effort to courageously portray some severe autism realities. You can find them on Youtube. And they are featured on the sidebar here at Facing Autism in New Brunswick. From CDFoakley "Persons You Don't See on Sitcoms, Reality Shows or Hollywood Movies":

For Conor There Is Fun And Then There Is Circle Place Fun

Conor had a great day trail walking with Dad this morning but his favorite part or our hike came when we visited the Circle Place; the Lawrence Amphitheatre.  Conor loves to play  balancing games on the curved cement seating rings of the amphitheatre.  We have an early spring.  Whether it is a false spring or not remains to be be seen, but Conor took advantage of the great weather to have fun at one of his favorite places - the Circle Place.

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Absolutely Awesome in Fredericton Today

Yesterday was a great day. Today though was awesome. Being Saturday I was able to get out for a couple of good walks. Conor got out too; walking and playing in the back yard. .

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Trails Start to Open in Fredericton on a Beautiful, Almost Spring, Day

It was a beautiful blue sky, "almost spring", day in Fredericton today. The trails are starting to open up for walking and I had to take the afternoon off and enjoy the outdoors. Conor wasn't keen to do any trail walking today but I am going to push him a bit harder to get out with Dad tomorrow if the weather is any where near as nice as it was today.

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Autism Jabberwocky Questions Michelle Dawson's Understanding of Evidence Based Medicine Concept

Autism Jabberwocky one of the best, and best written, autism blogs on the internet features an excellent commentary  which highlights an apparent lack of understanding by anti-ABA ideologue Michelle Dawson of the concept of evidence based medicine.  As explained by MJ at Autism Jabberwocky in Michelle Dawson Writes A Letter.

:
"Evidence-based medicine is the idea that all medical decisions should be based on the best scientific evidence that is available.  The concept is really very straightforward. You take the results that research has provided, rank them according to the quality of the information, and use that ranked evidence to decide what the best course of treatment is."

Making medical decisions as to appropriate treatment based on the best available evidence seems simple enough to grasp.  It is an eminently practical concept.  People can not just wait  decades  for perfect research  studies to be conducted under perfect conditions (which may never occur).  They have to make  treatment decisions based on the best evidence of safe and effective treatment  available at the time they are confronted with a medical condition requiring treatment.

It is one thing for Michelle Dawson, researcher, to hold out for an ideal and perfect study that may never happen.  It is another thing altogether for parents trying to help their autistic children overcome their disorders and live the fullest, happiest life they can. They have to make decisions to help their children based on the state of knowledge at the time.

MJ summarizes concisely and accurately the status of ABA as an evidence based, effective treatment for autism disorders and the curious nature of Michelle Dawson's apparently irrational opposition to ABA: 

"One of the few treatments for autism that does have a solid evidence base is ABA (Applied Behavior Analysis).   While it is not guaranteed to work for everyone, the available evidence shows that it can be an effective tool to help teach children with autism and is almost universally recommended.

That is, with the exception of the universe of Michelle Dawson.  As I have pointed out before, Ms Dawson has a real problem with ABA. She seems to have an almost irrational obsession with proving that ABA is somehow unethical or immoral to use on children with autism. She would tell you that she has ethical concerns and that there is very little evidence that ABA works.  However, Ms Dawson is almost universally alone in her opinion."

Michelle Dawson is not completely alone though.  Her anti-ABA views are shared by her collaborative colleague Professor Morton Ann Gernsbacher.  Gernsbacher's anti-ABA views have been scathingly reviewed by Professor Edward K.  Morris of the University of  Kansas who commented on the harm caused by Gernsbacher's misrepresentation of ABA:  A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures.

Michelle Dawson has spent her post Canada Post career  trying to tarnish the public perception of ABA as an effective, beneficial autism treatment. To my knowledge she has never explained what autism treatments, if any,  do meet with her approval.

Fortunately  the serious and credible reviews of autism interventions that have been done over the past decade and a half do not appear to give her views, or those of her colleague Morton Ann Gernsbacher,   any weight or mention.

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Autism Not a Gift for South Carolina Boy Who Jumped to His Death from a Moving Ambulance

"Shelley Hodge said nobody believed her when she protested her 16-year-old son’s release from a state psychiatric hospital, warning that he could hurt himself or someone else. That teen, Ryan Emory of Greenville, was being driven back to the same hospital Sunday when he loosened a gurney’s straps and jumped out of the back of an ambulance as it traveled down Interstate 85, authorities said.

Emory later died at Greenville Memorial Hospital "

- Greenville Online.com, Autistic Greenville High student dies after jumping from ambulance   

The Greenville Online describes an autism reality unlikely to be portrayed on CNN, or  the larger mainstream media generally,  which prefers to focus on feel good stories about high functioning persons with autism and Aspergers and generally ignores the  harsher realities confronting persons with low functioning autism disorders.  Thanks to Claire Danes and the producers of the recent biopic about Dr. Temple Grandin the misleading image of autism as nothing more than a different way of thinking will likely be pushed more and more by a mainstream media that has no desire at all to burden its viewers and readers with darker tales of the dismal life prospects of those for whom autism is a serious disorder.

CNN has posted a video clip of Temple Grandin on its web site opinion page under the title Temple Grandin: why autism is a gift. In the video Dr. Grandin describes yet again her way of looking at the world and, apart from describing her way of thinking in very positive terms, she also offers the widely circulated opinion that Einstein and Mozart were autistic; a claim based purely on speculation .  Many parents of autistic children would disagree with Dr. Grandin and CNN, which has in the past fawned over Amanda Baggs,  a person with an autism disorder diagnosis who once attended a college for gifted youth . Many parents, including me, love our children and find great joy in them,  but live with the reality that our children are not Dr. Temple Grandin,  that  they are much more severely affected by an  autism disorder which  will restrict and impair their lives.  For the sake of our children, we have to be brutally honest when describing their condition to a world that does not always want to hear about the realities confronting those most severely affected by autism disorders.

The Greenville Online article reports that Shelley Hodge said nobody believed her when she protested her autistic 16-year-old son’s release from a state psychiatric hospital, warning that he could hurt himself or someone else:

"The last six months have been particularly difficult, Hodge said.

Emory became more aggressive lashing out at relatives and others, she said. He was in and out of hospitals for fainting spells and his behavior. 

Hodge said that when the psychiatric institute released Emory, she protested plans to send him home.

“I’m like, ‘He’s 250 pounds. I’m afraid for his safety and mine,’”

“And I wrote that on the discharge plan. Hodge said she believed her son’s troubles went beyond autism and that he needed a thorough evaluation and to be in a controlled environment with “24-7 care.”

A state mental health worker told her Emory’s needs weren’t critical enough, she said

(Highlighting added - HLD)

The media, and health care authorities, don't always put much weight on the information provided by parents of children with autism disorders.  A world that  prefers to see autism as just another way of thinking, as the way of  Einstein and Mozart, does not always listen to parents who claim that their autistic child suffers from a serious disorder which causes harm to them and others. Shelley Hodge tired to tell them but it appears that no one listened.

Autism may be a gift for Dr. Temple Grandin. For others, like Shelley Hodge's son Ryan Emory, it is a disorder which can restrict their lives .... and even end them at an early age. You can read more fully about Ryan Emory at Greenville Online. You are unlikely to see his story  on CNN.

autism

Autism Vaccine Myth Busting: Thimerosal Is Still Used In Vaccines

One of the myths pushed in the mainstream media is that thimerosal, the mercury preservative used in vaccines, has been removed from vaccines.  That position simply is not true. 

The recent H1N1 panic showed that health authorities and pharmaceuticals still push vaccines containing thimerosal when it suits them.  The Ipswich Massachusetts Chronicle web site on  February 2, 2010 advertised immunization clinics for February 16 and 25, 2010 for thimerosal containing H1N1 shots:

"Only the injectable (shot) form of the H1N1 influenza vaccine will be used.


Participants should wear a shirt with loose0fitting sleeves or short sleeves to the clinic since the injection will be given in the upper arm.


Just like the seasonal flu vaccine, many formulations of the H1N1 vaccine contain a preservative called thimerosal. The vaccine that will be used at the clinic contains thimerosal."

Here in New Brunswick Canada the H1N1 (Swine Flu) vaccine also contained thimerosal and adjuvants and which were declared safe by our provincial health authorities as reflected in this  October 8, 2009 NB government news release. Of particular note, our provincial health authorities declared that thimerosal does not cause autism and is safe to give to pregnant women, one of the high priority groups targeted to receive the H1N1 shot during the fall H1N1 Pandemic/Panic:

• There have also been reports and public speculation about the safety of the H1N1 vaccine. The contents of the H1N1 vaccine will protect against contracting H1N1. The included additives and preservatives are there to help the vaccine work, and are not cause for alarm.
• As a multi-dose vaccine, the H1N1 influenza vaccine will contain a mercury-based preservative called thimerosal to prevent contamination of the vaccine by serious infectious agents from the growth of bacteria. Thimerosal also has a stabilizing effect on the vaccine, ensuring its effectiveness.
• The seasonal flu vaccine and most hepatitis B vaccines are also multi-dose vaccines, and thimerosal is added during the manufacturing process to maintain sterility of the vaccine.
• There is no safety reason to avoid using vaccines containing thimerosal. The best available scientific evidence to date shows no link between vaccines containing thimerosal and any adverse health condition, including neurodevelopmental disorders such as autism.
• The National Advisory Committee on Immunization (NACI) has reviewed the safety of thimerosal and concluded that, "There is no legitimate safety reason to avoid the use of thimerosal-containing products for children or older individuals, including pregnant women." International bodies, such as the World Health Organization (WHO) and the U.S. Food and Drug Administration, share this opinion.
• Most of the H1N1 vaccine available in New Brunswick will also contain an adjuvant. An adjuvant is a substance that is added to a vaccine in order to boost an individual's immune response. It also means that less of the virus, or antigen, is needed to make a dose of the vaccine. Unadjuvanted vaccine has no booster element, and more antigen is needed to create this kind of vaccine.
• By developing an adjuvanted vaccine, Canada has used less of the virus material (antigen), allowing us to immunize more people in a timely manner.
• Adjuvants are not new. Many commonly used vaccines in Canada contain an adjuvant. Adjuvants have been used for several decades to boost immune response to vaccines. However, adjuvants have not previously been used with influenza vaccines in Canada.
• The WHO has indicated that it has no special concerns about the safety of adjuvanted H1N1 vaccines in general.

The WHO is now under scrutiny for its role in pushing the H1N1 panic button.  And not everyone shares our NB officials' unquestioning faith  that thimerosal does not play a role in causing autism particularly when given to pregnant women.  Dr. Bernadine Healy, a highly respected former US National Institutes of Health Director has stated several times that the issue of a thimerosal autism connection is still an open question. She has made particular reference to the possible effect of the mercury preservative thimerosal o the fetuses of pregnant women:

"thimerosal crosses the placenta, and pregnant women are advised to get flu shots, which often contain it. Studies in mice suggest that genetic variation influences brain sensitivity to the toxic effects of mercury. And a primate study designed to mimic vaccination in infants reported in 2005 that thimerosal may clear from the blood in a matter of days but leaves inorganic mercury behind in the brain."

Former NIH Director Dr. Healy's concerns do not appear to have been taken seriously by public health authorities during the great H1N1 Swine Flu scare of 2009.

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