Adult Autism Care in New Brunswick

Dear Honourable Elected Leaders, Representatives and Public Officials

I am writing to you as the father of a 14 year old son with severe Autistic Disorder and profound developmental delays, and within 48 hours of the deaths of severely autistic 22 year old Benjamin McLatchie, and his father Daniel McLatchie, in nearby Gray, Maine. The Maine state medical examiner’s office has ruled the case a murder-suicide, the father having shot and killed his son and himself. Reports describe the father as a caring stay at home father who despaired for his son’s future, in a state with inadequate residential care for autistic adults, after his own inevitable passing. There is speculation that the father’s fears and despair might have prompted this tragedy.

Many parents, including here in New Brunswick, including this father, fear what awaits our autistic children after our passing. In New Brunswick the governments of former Premier Bernard Lord and current Premier Shawn Graham have both been world leaders in helping our autistic children. The same can not be said with respect to autistic adults.

Autistic children aged 2-5 can receive government funded early intervention program from trained service providers. The Stan Cassidy Center’s autism pediatric tertiary care team is of great assistance to many autistic children. The UNB-CEL Autism Intervention Training program, has received expert recognition for its excellent program and has trained several years worth of early intervention workers, teacher assistants and resource teachers in autism specific interventions. Many autistic children have received the benefit of a flexible, student oriented approach to educating autistic children in neighbourhood schools where those autistic children who can learn in a regular classroom do so while those, like my son, who require more individualized curriculum and training methods and place of learning adaptations do so in environments structured for their specific needs and strengths.

In adult care however New Brunswick has been stalled as reflected in the 5 years without substantial progress that have passed since a youth was housed on the grounds of the Miramichi youth correctional facility while waiting transfer to the residential treatment facility in Spurwink Maine. We have not established a residential care and treatment system that would provide assurance of a decent, respectful future for those autistic adults who will live dependent on the care of others, adults like Benjamin McLatchie in Maine. Group homes are not adequate for all of New Brunswick’s autistic population. Right now many parents are struggling desperately, and facing severe challenges, while trying to care for their adult autistic children at home. The most severely, low functioning autistic adults live at the psychiatric hospital in Campbellton far from parents and loving family members.

I have been present at several meetings over the years where government has been asked to provide a decent residential care system here in New Brunswick. Autism representatives have asked for an enhanced group home system with community based locations in different areas of the province. Of urgent importance has been the need for a geographically centralized combined residential care and treatment facility for autistic adults in Fredericton, close to the resources and expertise of the Stan Cassidy Center, the UNB-CEL Autism Intervention Training program and the University of New Brunswick Department of Psychology.

On this last day of Autism Awareness Month around much of the world and with the reality of the tragedy from Gray Maine still fresh in our hearts I ask you all to move New Brunswick forward to establish the autistic adult care system that is badly needed in New Brunswick.

Respectfully,

Harold L Doherty

Adult Autism Care in New Brunswick

Bad Man Grabbed Hand: An Autism Abduction Story That Ended Well

CNEWS Canoe reports out of Ottawa that a six year old girl with autism  screamed as a suspected predator grabbed her hand in what is believed by family to have been an abduction attempt and that her screaming may have saved her. The girl had gone missing from a family barbecue and the family and friends had gone looking for her.  A male friend of the family who helped in the search heard her scream and the suspected abductor fled.  The family friend gave chase but was slowed by the need to take care of the child: 

"She just screamed automatically and that is what drew the attention of my friend to go that way. He yelled, 'Hey!' and the man dropped Katrina. He booked it," Zion said Wednesday.

...

"Bad man grabbed hand," Katrina said after she was back with her mom. Zion said the man grabbed her daughter so hard he left a bruised handprint on her rib cage."

Police have released a description of the suspect.  

Bad Man Grabbed Hand: An Autism Abduction Story That Ended Well

Maine Man Shoots and Kills Autistic Son and Himself

Dennis Hoey of  The Portland Press Herald  reports that a man in Gray, Maine shot and killed himself and his 22 year old autistic son yesterday:

"A father shot and killed his autistic son Tuesday at their home on Yarmouth Road before turning the rifle on himself, Maine State Police said. Cumberland County sheriff's deputies found the bodies of Daniel McLatchie, 44, and his son, Benjamin McLatchie, 22, in the family's driveway at 227 Yarmouth Road around 2:30 p.m.  ... State police Sgt. Chris Harriman said ...  it appeared that Daniel McLatchie was upset about what would happen to his autistic son after he and his wife died. He was a stay-at-home father, Harriman said. Daniel McLatchie's wife, Allison McLatchie, 45, was at work when the shootings happened."

Ginger Taylor the Maine author of the Adventures in Autism blog, and herself the mother of an autistic son, was interviewed and  notes the lack of services including counseling services for families with autistic children.  Ms Taylor commented on the pressures on families with autism and on the greatest fear of many parents of autistic children:

"That is the big question -- what happens to our child when we die. .... We understand their needs better than anyone else. It really breaks my heart hearing what happened to this family. It shouldn't be like that."

Many people will undoubtedly condemn Daniel McLatchie for taking his son's life.   Some will call for more services.   Few, if any, will take the real action necessary to ensure that people  with autism disorders like Benjamin McLatchie have a decent place to live when their parents are dead.    

Few, during Autism Awareness Month, and certainly not Hollywood or the main stream media giants, will look beyond the  accomplishments of a few High Functioning media celebrity "autistics" to  even acknowledge the existence of severely autistic persons living desperate lives in institutional facilities.  Even fewer will acknowledge, without mocking or attacking them, the fears of parents  obsessed with worry about what will happen to their children after they die. 


In the end, whether it is at the hands of a distraught parent, or from life in prison like, psychiatric hospitals, it is the most vulnerable, the most severely affected by autism disorders who suffer from lack of reality based autism awareness and support services.

Maine Man Shoots and Kills Autistic Son and Himself

CBS Utters Autism Profanities: The C Word and the P Word

CBS may be asking for trouble with its use of words deemed profane by self appointed spokespersons on behalf of severely autistic children and adults. In one article alone Autism Challenges American Science to Seek Cure CBS utters two words, "cure" and "parents", that are considered vulgar, unfit for discussion  and morally reprehensible by President Obama's disability council nominee Ari Ne'eman and other very high functioning leaders of Autism's Neurodiversity sect who do not consider autism a disorder or a disability that should be cured and who oppose efforts by parents seeking cures for their own autistic children. To compound its poor behavior CBS even interviewed, and quoted, some parents of autistic children.

Parents seeking cures for their children's autism disorders being given a platform by CBS News?

Oh, the horror of it all!

CBS Utters Autism Profanities: The C Word and the P Word

Autism Awareness Beyond Temple Grandin: Who Will Care for Our Children When We Are Gone?

April 30 is fast approaching and Autism Awareness Month has been marked by the usual stories about the remarkable accomplishments of author, public speaker, very well educated and extremely successful entrepreneur and innovator Dr. Temple Grandin arguably the most accomplished and well-known adult with autism in the world.  Beyond the Temple Grandin stories there is also the usual  speculation that Einstein, and various other historical geniuses,  were autistic.  The identification of autism with historical genius is  led by academic Michael Fitzgerald of the Department of Child Psychiatry at Trinity College, Dublin, who "has speculated about historical figures with autism in numerous journal papers and at least three books".  

Seldom do autism awareness efforts feature the harsher realities faced by many with autism disorders, particularly those with Autistic Disorder   who can not and, unlike Temple Grandin, do not,  become able to speak or otherwise communicate.  Not much is said about autistic children who are seriously self injurious , who drown in neighborhood schools or wander into deadly snow storms or  automobile traffic.  One of the most glaring omissions is the failure to make any, mention of the 75-80% of persons with Autistic Disorder who are also cognitively impaired or intellectually disabled.  Temple Grandin is one thing but it would be much more difficult to hire a talented and beautiful actress like Claire Danes to put a pretty face on autism if the person she was portraying was  intellectually disabled and destined to spend her life in a  psychiatric hospital. 

Parents of children with autism disorders, at least those whose children are severely affected by autism disorders,  do not have the luxury of pretending that autism is a blessing.  Many of us  are haunted by the Ultimate Autism Reality  and wonder who will care for our children after we die. We   have to live every day haunted by the reality that our children will be unable to care for themselves and will live dependent on the care of strangers. 

Virginia Bovell writes about the ultimate autism reality in the Daily Mail in Who'll be there to care for our autistic son when we're gone?: 

"Danny was diagnosed with autism when he was three years old. He is now 16 and, alongside his severe learning difficulties, this year he has been in and out of hospital with chronic gastrointestinal problems.

He is often in intense pain and is on a fair bit of medication. We keep daily charts, we observe changes in minute detail, we adjust dosages - it is like a meticulously calibrated battle plan.

When he is well, it is as if he doesn't have a care in the world. He is cheerfully non-verbal - he has only a few words, such as 'momma', and 'diddle' for daddy. He is also happily and unresentfully dependent on others for most of his waking life.

On a good day I am optimistic for Danny, but if I'm honest, worry often keeps me awake at night. Because he doesn't speak, and understanding him requires close observation, I wonder who will love him enough to give him the levels of meticulous attention that a parent would."

Ms Bovell, and the Daily Mail, are helping create some real autism awareness as April draws to a close.  It may not make for a feel good movie but what they describe is the Ultimate Autism Reality.

Autism Awareness Beyond Temple Grandin: Who Will Care for Our Children When We Are Gone?

Autism Reality News Beat: Autism Speaks Guest Comment by Professor Valerie Hu

In  GWU Medical Center Study Suggests Autism May Be Treatable  I commented on the press release highlighting the work of Professor Valerie Hu and her colleagues at George Washington University, who claim to have found a way to identify autism disorder using blood. Their study also discovered that drugs that affect the methylation state of genes, drugs currently used in fighting cancer,  might also reverse specific autism effects.  This autism news provides some badly needed good news about possible autism treatments.  

In Beyond genetics: What the new fields of functional genomics and epigenetics are revealing about autism  Autism Speaks offers a guest post from Professor Valerie Hu, a Professor of Biochemistry and Molecular Biology at The George Washington University Medical Center  as well as a mother of a son with ASD.  The comment also offers links to two studies by Professor Hu and her colleagues at GWU. 

Professor Hu describes the functional genomics approach to studying genes employed by the GWU team.  This approach focuses on gene expression explained as the activities of the genes.   The team has in fact published two studies which together, using the functional genomics approach "illustrate two different “epigenetic” mechanisms controlling gene activity in autism that lie beyond genetic mutations".  The studies suggest that some of the symptoms of autism may be reversible by reversing or controlling gene activities.

The Autism Tissue Program of Autism Speaks provided brain tissues used in one of the studies.  I highlight this point here because of the hostility directed at Autism Speaks from anti-cure interest groups like ASAN.  Studies like those by Professor Hu and George Washington University may actually help autistic persons like my son.  Autism Speaks deserves recognition for its contribution to such studies and I thank them for their contribution.

Autism Reality News Beat: Autism Speaks Guest Comment by Professor Valerie Hu

It's OK, It's Politically Correct to Stigmatize Persons on Intellectual Disabled, Low Functioning End of the Autism Spectrum

"The stigma of autism is fading fast. One reason is that we now understand that autism is a spectrum with an enormous range. Some people with autism are nonverbal with profound cognitive disabilities, while others are accomplished professionals.

...

People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.

...

We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”

NYT Times Op-Ed, Disorder out of Chaos,  February 9, 2010, Roy Richard Grinker, Anthropologist,  father of a daughter with Asperger's

The stigma of autism is fading fast for those with Aspergers disorder who, by definiton, do not have intellectual disabilities, and who can be quite successful in many fields of endeavor.  The original stigma against those with autism who are intellectually disabled continues and is in fact promoted by people like Professor Grinker who essentially argue that persons with Aspergers should not feel stigmatized by inclusion in the autistic disorder category in the DSM 5 because we know that people with autism are really quite intelligent.  The stigma feared by those with Aspergers who express concern, and spokespersons like Grinker,  is clearly the stigma of being associated with the intellectually disabled.   

The NYT and Professor Grinker do not urge anyone to refrain from such fears  on the basis  that there is nothing wrong with being placed in a disorder category with persons with intellectual disabilities.   Instead,  in 2010 they try to imply that persons with autism disorders don't really have intellectual disabilities at all.  This is a falsehood, perpetuated by successive revisions of the DSM including the DSM 5.  In 2010 it is OK, it is in fact politically correct to stigmatize the intellectually disabled members of the autism spectrum in order to make some persons with Aspergers feel comfortable about formal inclusion in the autistic disorder category.

Professor Roy Richard Grinker, and the New York Times which gave him their podium, assert that autism disorders are disorders only in the sense that persons carrying an autism disorder diagnosis are socially awkward.  They make light of the very harsh realities faced by persons with severe, low functioning autistic disorder diagnoses.  While Professor Grinker,  with a high functioning, intelligent, if socially awkward daughter, feels comfortable in assuring us that "people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s"this father of an intellectually disabled, low functioning 14 year old boy with severe Autistic Disorder does not buy what the Professor is selling.  Professor Grinker's opinion, rosy at it is, informed as it is by his high functioning daughter's Asperger's Disorder, is not substantiated by professional literature or anecdotal evidence concerning Autistic Disorder.

I  know first hand the realities of living with, raising and caring for a severely autistic child, now well into adolescence.  As an advocate I have represented parents of severely autistic children trying to cope with the realities of severely autistic children while the good professors and others who promote autism as a strength prattle on with their powerful media megaphones like the NYT in hand.  As an advocate here in New Brunswick, Canada I have visited with severely autistic persons living in psychiatric hospital facilities.  The good Professor's rose colored,  Autism as Asperger's, glasses obscure his understanding of the harsher realities faced by the severely autistic to the detriment of those most severely affected by autism who need society to understand those realities before their lives can be changed for the better.

The Professor apparently doesn't follow news of autism as closely as he follows news of Aspergers.  If he did he would know of people like  Keith Kennedy lost in mid-west woods for a week, James Delorey who wandered off to his ultimate demise in a Nova Scotia snow storm, the child who died in a neighborhood pool recently,  the young man arrested by police at a  hospital that refused him admittance because of his autistic behavior  who informed the arresting officer that he was a good boy,  and those who are lost in local traffic . Or he might know of those severely autistic children like my son Conor who was fortunate to survive a busy neighborhood street because a truly good Samaritan stopped his vehicle before traffic stopped my son's life and took him to a local convenience store where I was able to locate him, whole and healthy with chips and candies in hand,  after calling 911.  

If the good Professor knew the realities of severe autism disorders he would know of the middle aged woman living in a New York residential facility who was  repeatedly, severely and physically abused by staff until caught on camera and saved by a conscientious staffer.  The  abuse had gone of for some time but the woman, severely autistic, was unable to communicate her situation to the facility and may not have known she could do so.  

The myth that even non-verbal autistic persons have Aspergers like intelligence is promoted in stark defiance of the professional studies done to date.  The Canadian Psychological Association, which embodies in its membership at least as much knowledge of the autism spectrum as that which can be attributed to Anthropology Professor Grinker,  stated in its 2006 Canadian Senate submission that ""Cognitive impairment is present in about 80% of persons diagnosed with Autism and general intellectual functioning is most often below average"  The  CPA figures, which expressly included only autism and excluded  Aspergers from the 80% figure,  mirror very closely two successive surveys conducted by the CDC in the US.  CDC  Autism and Developmental Disabilities Monitoring (ADDM) Network gathered data in  2004 and 2006  that indicated between 41 and 44% of persons on the autism spectrum (including persons with Aspergers who, by definition are not intellectually disabled or cognitively impaired) also suffered from intellectual disability.

Professor Grinker, proud father of a daughter with Aspergers,   does not mind reassuring people with Aspergers that their inclusion in the DSM 5's autistic disorder category will not result in their stigmatization by association with intellectually disabled persons with autistic disorder.  This proud father of an intellectually disabled son with autistic disorder does mind.  I mind very much and I strenuously object to this  stigmatization of intellectually disabled autistic persons like my son.  For me, such stigmatization is not politically correct.  It is offensive and  unacceptable.  

It's OK, It's Politically Correct to Stigmatize Persons on Intellectual Disabled, Low Functioning End of the Autism Spectrum

Conor and Feathered Friends on a Special Treat Walk Adventure

Mom, Dad and Conor headed out for our Saturday morning grocery and treat walk adventure.  Today was a special one. Conor, on his initiative,  stopped at the vegetable section to pick out some peppers  - one orange, yellow, green and red.  He also spotted a basketball and Mom and Dad just coudln't say no.

Along the way we had the company of some fine feathered friends.  I wish I could have produced an audio of the different bird noises we heard chattering back and forth as we moved along the trail.

Conor and Feathered Friends on a Special Treat Walk Adventure

GWU Medical Center Study Suggests Autism May Be Treatable

"As the mother of a now 22-year-old son with an autism spectrum disorder, I hope our studies, as well as those of others, will lead to therapies that are designed to address specific deficiencies that are caused by autism, thus improving the lives of affected individuals.  Since autism is very diverse in the array of symptoms present in any given individual, it is first necessary to be able to identify specific deficits in each individual in order to design and then prescribe the best treatment."

Professor Valerie Hu, George Washington University, Researcher

As reported on UPI.com, Study: Autism may be amenable to treatment, Professor Hu was commenting on the recent GWU study that claims to have found a way to identify autism disorder using blood. The study also discovered that drugs that affect the methylation** state of genes, drugs currently used in fighting cancer,  might also reverse specific autism effects. 

Successful, high functioning persons with Aspergers diagnoses, like university student and Obama  appointee Ari Ne'eman, and businessman, author and speaker John Elder Robison, who do not want parents to describe autism disorders honestly, and who do not want  us to  seek to cure our  own children of their autism disorders  might be alarmed by studies such as the GWU study and by Professor Hu's comments.  This father of a 14 year old boy severely affected by his Autistic Disorder is very pleased to see such studies taking place.

Thank you Professor Hu, and GWU Medical Center,  for your efforts to find treatments to help our autistic loved ones who suffer from the effects of  their autism disorders.  

On behalf of my son, Conor, I say thank you.

**For a helpful (to this humble layperson) explanation of methylation, genes and various diseases and disorders I suggest Silencing of the Genes on the Genome News Network

GWU Medical Center Study Suggests Autism May Be Treatable

Autism and Experimental Stem Cell Treatment

Attached is part of a PR Web Press Release for a clinical trial application being submitted to Greek authorities by AdiStem Tehcnology. It indicates that a  group of doctors in Greece are preparing a protocol for submission to the Greek Ministry of Health for an official clinical trial of stem cell treatment on children with autism spectrum disorders:

The stem cell technology developed by AdiStem for the past 5 years has been used and trialed by doctors around the world for the treatment of type II diabetes and its complications, osteoarthritis, and cosmetic medicine. Physicians in Greece approached the company recently with the intent to treat Yannis, the son of Dr. Solomos, a cardiologist. Yannis, a 9 year old boy, had been diagnosed with autism but not responded to standard treatments.

An experienced doctor, the father, Dr Solomos, carefully reviewed the case studies of other children with Autism who had received the AdiStem stem cell treatment in Europe and Asia, and was convinced of its safety and potential for improving the condition of his son. With the help of experienced pediatric surgeons Yannis underwent an hour long mini-liposuction procedure at Kratiko Nikaias Hospital in Athens in which 200cc of abdominal fat was harvested. The fat was dissolved, the stem cells isolated and then activated, and over 100 million cells were returned to Yannis through a standard intravenous drip. Yannis was discharged on the same day.

Just one month later, his father was astonished to hear Yannis talking to him on the phone for the first time. Dr. Solomos explained: "my boy has simply not been able to speak to me on the phone before". Asked if he’d noticed any other changes, he replied: "His school tells me his attention has improved. We experience him nearer to us and he feels us. I see a change in his ability to connect with other children. He plays with them now, which he used to avoid. He has also become more interested in letters and numbers". (This interview with Dr.Solomos was recorded on video and can be viewed at "www.adistem.com/application/autism.htm").

Present during the treatment, Dr. Koliakos, Associate Professor at Aristotle University and President of Hellenic Research Foundation Stem Cell Bank pointed out: "One month after the therapy Yannis has shown remarkable progress according to his father's observations. The child will be reevaluated by pediatric psychiatrists 3 months after the therapy to measure the extent of progress in his condition and to decide if the remainder of his stem cells, presently stored in liquid nitrogen, should be administered".

Dr.Kolaikos continued: "We're convinced about the safety of intravenous adipose stem cell therapy – if supported by accredited facilities – and our team has now applied for a large formal clinical trial on autism using AdiStem's stem cell protocol here in Greece".

Terry Grossman, M.D., stem cell researcher from Golden, Colorado said, "I was present to observe 9 year old Yannis undergo the stem cell procedure at the Kratiko Nikaias Hospital in Athens. Further studies are needed, but it is possible that stem cell therapy will soon be available as a powerful new tool to help children with autistic spectrum disorders."

There is much controversy surrounding most aspects of autism spectrum disorders including issues concerning treatment and research involving children.  In this case the PR Web press release states that a trial was run with a child whose father, an experienced medical doctor, consented to his participation  after reviewing case studies involving other children with autism who had received the treatment.  The father, a medical doctor, also provide his observations which indicated substantial improvement in his son's condition.  The procedure was performed by experienced pediatric surgeons and   is vouched for by a Greek professor and researcher as being safe when administered at a proper facility. In addition to the father's observations the child will be seen at follow ups by pediatric psychiatrists for further measurement of his progress and for a determination of whether to continue with the treatment.

The procedure itself was observed by an American stem cell researcher/doctor who says further study is needed but that  but it is possible that stem cell therapy will soon be available as a powerful new tool to help children with autistic spectrum disorders.  The research team involved has applied for a large formal clinical trial on autism using AdiStem's stem cell protocol.

It will be interesting to see what comes of the Adistem application and formal clinical trial results.   This father of a severely autistic 14 year old boy has insisted that my son receive only evidence based interventions and I will not depart from that principle.  But I do not close my mind to new interventions either if they are subsequently supported by a strong evidence base.  If  responsible studies  conducted safely, produce credible results and provide reliable evidence of new interventions that could help my son then I would want, in consultation with trusted professional advisers, to consider new interventions for his benefit.   

It remains to be seen whether the AdiStem trials will provide such evidence but in the meantime this father of a severely autistic son will keep an open mind on the subject. 

Autism and Experimental Stem Cell Treatment

"But Officer I'm a Good Boy" - Severe Autism Reality Hits Home in Oklahoma as the APA Prepares to Substitute Aspergers for Autistic Disorder in the DSM-5

While many major news outlets, Holllywood and the American Psychiatric Association  (in the DSM-5)  are doing their best to convince the world that autism disorders are really just a different way of thinking, that autistic persons are all socially awkward but brilliant success stories waiting to be profiled,  reality hits home for those who are severely affected by autism disorders and the parents who care for them as it did last week in Oklahoma for Stephen B. Puckett, a 28 year old severely autistic man, and his family.

Credit is due to NewsOK (The Oklahoman online) and Age of Autism for reporting the story of Stephen B. Puckett whose autism disorder induced violent behavior at an Oklahoma hospital (OU  Medical Center)  resulted in him being arrested and  taken in handcuffs to an Oklahoma City Jail where his lawyer states that he spent three days in a straight jacket on suicide watch. NewsOK reports that Age of Autism readers responded to that site's coverage with messages of support for the family. A video of Mr. Puckett's mother talking about the situation and changes needed can be found at the NewsOK web site.

The hospital had refused to admit Mr. Puckett after he suffered seizures as a result of his autism. When Mr. Puckett kicked and scratched hospital police officers he was hauled away in handcuffs by police and spent three days in jail in a straightjacket on suicide watch.  As he was being taken away the Oklahoman reports that  Mr. Puckett was heard to say to one of the arresting officers "but officer I'm a good boy". 

Ultimately charges were not laid against Mr. Puckett.  Oklahoma County first assistant District Attorney Scott Rowland refused a police request to file charges recognizing that there were mental health issues involved and not wanting to have Mr. Puckett placed in the general prison population. Stephen Puckett's mother has called for legislative policy changes so that hospitals can not refuse to admit people suffering from autism induced seizures. 

What is also needed is recognition by  the American Psychiatric Association that intellectual disability and cognitive impairment, seizures and other issues are often part of autism disorders.  It is wrong headed and dangerous for the APA to remove any mention of intellectual disability from the description of autistic disorder in the DSM5.  The APA currently plans to separate Intellectual Disability from Autistic Disorder and replace it with  the high functioning form of autism now known as Aspergers.  This will not help society or hospitals in Oklahoma understand that as many as 75-80% of persons diagnosed with what is today known as Autistic Disorder are also intellectually disabled or cognitively impaired or that many suffer from seizures and meltdowns such as those that occurred in the OU Medical Center.   

Autism reality is being replaced in the DSM-5 by psychiatric profession convenience (clinical utility) to the detriment of those most severely affected by autism disorders whether they live in Oklahoma in the US or Fredericton, New Brunswick here in Canada. The APA whitewashing of autism realities is well underway and will continue with the APA substitution of  Aspergers for Autistic Disorder in the DSM-5.

"But Officer I'm a Good Boy" - Severe Autism Reality Hits Home in Oklahoma as the APA Prepares to Substitute Aspergers for Autistic Disorder in the DSM-5

On World Autism Awareness Day Canadian Government Damned Itself With Faint Praise

Damn With Faint Praise

Compliment so feebly that it amounts to no compliment at all, or even implies condemnation. 

For example, The reviewer damned the singer with faint praise, admiring her dress but not mentioning her voice. This idea was already expressed in Roman times by Favorinus (c. a.d. 110) but the actual expression comes from Alexander Pope's Epistle to Doctor Arbuthnot (1733): "Damn with faint praise, assent with civil leer, and, without sneering, teach the rest to sneer."

 Answers.com

The Government of Canada, with its World Autism Awareness Day message from the Honourable Leona Aglukkaq, Minister of Health,  damned itself with faint praise for its feeble efforts to help children and adults with autism disorders in Canada:

April 2, 2010

As Minister of Health, I am pleased that Canada is joining other countries in recognizing April 2nd as World Autism Awareness Day. I would like to take this opportunity to thank the Autism Society of Canada and all autism organizations across the country for their tireless work in creating awareness about Autism Spectrum Disorder (ASD) and providing support to those affected by this condition.

ASD affects people from all walks of life, as well as their families, friends and caregivers. Roughly one out of every 150 Canadian children is affected by ASD . While there has been progress in research, care and education, we need to learn more about the causes of ASD and the most effective treatments and interventions.

The Government of Canada recognizes that autism is an important health and social issue which presents challenges for many Canadian families. We are committed to supporting research and raising awareness. The Canadian Institutes of Health Research has provided approximately $35.3 million for research related to autism since 2000. 

I would like to express my sincere appreciation to every autism organization in Canada for their continued dedication to improving the lives of Canadians living with ASD.

Leona Aglukkaq

Minister of Health

Government of Canada 

You will notice that the Government of Canada's World Autism Awareness Day message makes no reference to any  monies spent  to assist the provincial governments in providing effective evidence based preschool interventions, autism specific training of teachers and education assistants  or autism appropriate residential and treatment facilities for youths and adults.


The sum total spent by the Government of Canada to address Canada's autism crisis, "an important health and social issue which presents challenges for many Canadian families"to quote the Honourable Minister of Health, is $35.3 million dollars for research ....... over a 10 year period from 2000 to 2010.

Alexander Pope, were he with us today, might say that the Government of Canada has damned itself with faint praise,  that it has, without sneering,  taught us all to sneer  ..... at its less than feeble efforts to address Canada's important health and social issue, our national autism crisis.  

On World Autism Awareness Day Canadian Government Damned Itself With Faint Praise

Big Waves at the Bay of Fredericton this Morning

Fredericton looked like a city on the Atlantic ocean this morning with the wind and the rising St. John River waters producing some pretty good waves and flooding up over the walking trails on both sides of the river.

Big Waves at the Bay of Fredericton this Morning

Autism Rising, Environmental Causes of Autism Disorders, and the Top Autism Interview of the 2000-2009 Decade

The autism interview of the decade, from the perspective of this father of a severely autistic 14 year old boy seeking real answers and future directions concerning my sons Autistic Disorder,  is the David Kirby interview with Dr. Tom Insel in December 2009. There are many contentious debates in discussions of autism disorders including the debate over whether the startling increases in rates of autism diagnoses over the past decade from 1 in 1000 to 1 in 500 to 1 in 110 reflects a real increase in autism or whether they are attributable entirely to the diagnostic  manual changes in the early 1990's combined with increased awareness and the alleged existence of autism services motivating parents to seek autism diagnoses.  Tied directly to this issue is the question of whether autism is caused entirely by genetic factors or whether environmental factors are also involved.

David Kirby's recent interview with Dr. Tom Insel, head of the IACC, and not known to be a celebrity actress, an anti-vaxxer or an hysterical, rage filled parent of a child with an autism disorder,  sheds much light on these issues. I encourage everyone, including reporters and journalists with Mainstream Media outlets and anti autism cure Neurodiversity ideologues like Obama disability nominee Ari Ne'eman, to read the transcript of the Kirby interview with Dr. Insel in its entirety.  Some important points made by Dr. Insel in that interview:

"So how much of the doubling or - in this case tenfold increase over a decade - how much of it is related to change in diagnosis, how much to ascertainment? It looks like about 24 percent of the California increase can be attributed to something like a change in diagnosis criteria. They are beginning to use multiple diagnoses. So that children before, who were listed simply as mentally retarded rather than autism - but they had both - are now logged in with both. But that really caps out at around 24 percent. There’s probably another piece of this, which globally could be attributed to ascertainment. But that caps out at around 16 percent, or something like that. And when you put all of that together, you are still well below explaining 50 percent of the increase.

So what does that mean? It means that, as far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected." 

...

This tells you that, you really have to take this very seriously. From everything they are looking at, this is not something that can be explained away by methodology, by diagnosis. Some piece of it can, but the whole thing can’t.

...

 Yes. I don’t think anybody is arguing that it is 100-percent genetic. I mean, I think that there are just a lot of questions that this raises. And I don’t think in those terms, exactly, that it’s either genetic or it’s environmental. From my perspective, it’s almost always going to be both. And the only question is: How do you nail down this interaction, how do you go after it?

...

There is no question that there has got to be an environmental component here. The problem for us has been trying to find the right way to get our hands around it, and to identify what that is most likely related to." 

The acknowledgements by Dr. Insel, head of the Interagency Autism Coordinating Committee, (1) that autism is really increasing and (2) that there is an environmental component to that increase are huge developments in our attempts to understand autism disorders and what is causing them. The assumption for over a decade has been that autism is 100% genetic and that none of the autism increase is real.  Funding of autism research has reflected those twin assumptions.  Now is the time to face autism reality, to start researching and understanding the interaction of genetic and environmental factors that cause and contribute to autism disorders. With the knowledge gained from understanding what causes autism disorders we will be much better able to identify treatments and cures to help those afflicted by these serious disorders.

David Kirby's December 2009 interview with IACC Director Tom Insel easily ranks as the top autism interview of the 2000-2009 decade ... in the opinion of this humble father of a son severely affected by Autistic Disorder. 

Autism Rising, Environmental Causes of Autism Disorders, and the Top Autism Interview of the 2000-2009 Decade

Autism Cure and Recovery and Obama's Divisive Disability Nominee

One of the great surprises of the Obama administration, for this Canadian father of a 14  year old boy with severe Autistic Disorder, and long time autism advocate, is the nomination of a divisive, confrontational but very high functioning young university student with Aspergers to a prominent US disability council.  Mr. Obama won respect around the world, including here in Canada, for his ability to reach across traditional political battle lines to move forward with a consensus.   Yet, with the nomination of Ari Ne'eman President Obama has nominated a young man of limited experience with, or knowledge of, autism disorders and absolutely no experience with severe Autistic Disorders who opposes curing autism, and mocks and ridicules the concept of recovery from autism disorders  despite the work done over many years by people like Dr. Doreen Granpeesheh of CARD to do exactly that.

Mr. Ne'eman also attacks the Autism Speaks organization which has raised autism awareness substantially by its many high profile media events and by its involvement in the establishment of World Autism Awareness Day recognized by the United Nations. Mr. Ne'eman himself has found an organization led by people just like him ... very high functioning autistic persons or persons with Aspergers.   He has displayed in his public comments no understanding of the serious life long challenges facing severely autistic children and adults. 

Nor has he shown any respect whatsoever for the role of parents in raising severely autistic children to live the most fulfilling lives possible and the wishes of many of them that research aimed at finding autism treatments and cures continue.  Mr. Ne'eman, the young university student, views the "autism spectrum" as an entity of which he is the natural leader. In Mr.Ne'eman's mind he is better suited as a person with an extremely mild form of autism spectrum disorder to decide what is important for severely autistic children than the parents and families who care for and love them.  For President Obama to embrace this divisive ego  as a disability council nominee is bizarre and unsettling. 

My opinion carries zero weight in US political matters.  Perhaps as a Canadian my opinion actually carries a negative factor. But as the father of a severely autistic son who was diagnosed with his Autistic Disorder before Mr. Ne'eman received his very mild Aspergers diagnosis, and who has been involved in autism advocacy for a dozen years, I know that this appointment will cause great harm to the future prospects of the severely autistic in the US and elsewhere in the world beginning right here in Canada where US influence is not an abstraction but a fact of daily life.  For many years US autism research, including the research conducted by Dr. Ivar Lovaas, and the work done at places like CARD and the May Institute, have been huge positive influences in helping Canadian children with autism disorders including my son.  It now looks as though US autism thinking is taking a turn for the worse and that will be felt here in Canada... to the detriment of children with severe Autistic Disorder ... children like my son Conor.

Autism Cure and Recovery and Obama's Divisive Disability Nominee

Environmental Factors Contributing To Autism By Irva Hertz-Picciotto

Autism researcher Dr. Irva Hertz-Picciotto has published an excellent commentary on the Environmental Factors Contributing to Autism at scientificblogging. This is a must read for anyone with a serious interest in autism disorders and ALL of the possible contributing factors to autism.

This comment is, fittingly, posted on the scientificblogging Autism Awareness page.

It is a valuable contribution to real autism awareness.

Environmental Factors Contributing To Autism By Irva Hertz-Picciotto

River Rising Tall Guy Walking

Mom, Dad and Tall Guy (Conor) were up for our early morning trail walk to the Superstore.  We  live near the St. John River which has been rising.  You can see the waters up near the trail and bridges in the pictures.  But the trail is still dry and clear and we headed out.  Conor looked forward to one of his usual treats -  "Baby" Birthday Cakes at the Superstore.  

When we arrived the cakes were just fresh out of the oven and had no icing on them so we went for a walk over to the nearby Circle Place where Conor waited patiently.  When we returned the icing was still being done but one was all ready for Conor.  The lady at the counter did it up for him right away. (It isn't Conor's birthday he just likes the small "Baby" Birthday cakes).  We don't give lectures to the people at the Superstore, or anyhwere else in Fredericton, about autism acceptance.  Conor has always been well treated by the good people of Fredericton. And we appreciate it. 

River Rising Tall Guy Walking