Tuesday, May 31, 2011

Adult Autism Residential Care: Close the Institutions But First Provide An Alternative

My younger son Conor  is 15.  He is not a very high functioning, celebrity "autie" or "aspie".  My son actually has an Autistic Disorder with "profound developmental delays".   He is living a great life now, at home, with a Mom and Dad, who take incredible joy in his company and at school where he has been treated very well by school and district officials. His adult care prospects in New Brunswick though are grim and they are not getting any better as successive governments, Conservative and Liberal, have failed to face the realities of adult autism care. His prospects will remain grim until government and the powerful New Brunswick Association for Community Living face reality and fill the gap that exists for severely autistic adults in residential care ... the gap between inadequate group homes and life in a psychiatric hospital. 

New Brunswick has done very well in developing a leading model of early autism intervention service delivery.  My son's autism challenges have been well accommodated in school  although there is much improvement that could be made across the system as a whole especially in rural schools.  Not all New Brunswick autistic school children have received appropriate accommodation for their autism challenges. On the adult level New Brunswick has stood still, has twiddled its thumbs and done nothing to improve the adult autism residential care "system".

Conor is a great joy in our life but Conor's Autistic Disorder and  Intellectual Disability impose serious functional limitations on his ability to live and enjoy life to the fullest.   He is now 6 feet tall and growing.  Like his Dad at a much younger age he has a very powerful muscular physique.  With his serious challenges he will require, when his parents can not provide care because of old age or death, and for the rest of his life, full time, 24/7, adult residential care.  Currently in New Brunswick that usually means either a psychiatric hospital placement or placement in a home with staff who are not properly trained and without the security and expert supervision  his condition requires.  In some cases ad hoc arrangements such as placement in a hotel room or on the grounds of a correctional facility or export to another province or American state facility have been made.  The CBC in Autism services needed for N.B. adults spoke with New Brunswick autism expert Paul McDonnell:

"What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists." ... In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community," he said.

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership. The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"Such a secure centre would not be based on a traditional 'hospital' model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development," he writes. "The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff.

Canadian governments, including successive Conservative and Liberal governments here in New Brunswick, have failed to provide adequate, decent residential care for adults with autism disorders.  A couple of years ago I attended a meeting at the Campbellton psychiatric hospital in Northern New Brunswick.  A major question to be answered was whether the facility should remain open or be closed.  The answer was put to a vote and the answer was unanimous: the psychiatric hospital must remain open until real alternatives are developed and in place.  I was part of that unanimous decision. I do not want my son to live in a hospital but I know he is unlikely to receive adequate residential care in a New Brunswick group home. 

 In 'What happens if I'm not around?' mother of autistic teenager asks"   journalist Michael Tutton, as part of an excellent series reporting the inadequacies of adult care facing many adults with disabilities  in Canada,  reports his discussion with a spokeswoman for the British Columbia Association for Community Living, an advocacy group for people with disabilities:

"Faith Bodnar, the executive director of the association, says it's ironic that the issue is unfolding in B.C. because it was a pioneer in promoting the shutdown of larger facilities for people with intellectual disabilities in the mid-1990s.
It also created a network of new living arrangements in the community, such as home-sharing where people with intellectual disabilities share homes with caregivers who receive monthly funding.
However, Bodnar says the association receives emails daily from parents who say the supports they need for their grown-up children aren't there.
"We are running a serious risk of people not having the supports to be safe in the services they have," says Bodnar.
"Our members are telling us that they're concerned that safety issues are developing."
The situation in British Columbia is only ironic to those who have believed that the solution to helping seriously challenged adults with mental health and developmental disorders, including autism disorders, is to simply close institutions and place everyone in community settings without accommodating their disability based challenges.  There is in fact a need for some residential facilities for severely autistic adults  to bridge the gap between community group homes and psychiatric hospitals as noted by autism expert Paul McDonnell.  For those most severely affected a center, integrated in the community but providing the expert care, educational programs, recreational services and security that those most severely affected by autism require is badly needed. Such a center will probably be needed for Conor. Such a center is not on the immediate horizon in New Brunswick though where a  highly influential and extremist community inclusion philosophy prevents any discussion, analysis or developmental of alternatives to our current group home/psychiatric hospital system of adult autism residential care. 

Monday, May 30, 2011

Kung Fu Panda 2, Trail Walking and Conor's Autism Progress

Conor Enjoyed Watching Kung Fu Panda 2 in 3D  ... and so did Mom and Dad

In the early evening Conor and Dad got some fresh air and
 enjoyed the  view on a trail walk along the St. John River

Yesterday was a great outdoors day for Conor with long trail walks in the morning with Mom and early evening with Dad.  He was able to enjoy lots of fresh air and .... always a good thing ... was able to burn off lots of energy.  In the afternoon though Conor, Mom and Dad all headed to the movies to see Kung Fu Panda 2 in 3D.  Conor watched the entire movie quietly with no sign of discomfort.  KFP2 was the latest in a series of theater trips which began about a year ago with Toy Story 3 and Shrek 4.   Conor's movie attendance has been a sign of progress in that he was unable for several years to sit in a movie theater without leaving very early overstimulated and overwhelmed.  He just had to see the Toy Story 3 and Shrek 4 movies though and he started going to the movies, and enjoying them,  again.  

School has made a  big difference as well.  Conor had been increasingly, but selectively, exposed to stimulating common environments by his excellent education assistant throughout his middle school years. In his first year of high school part of each day is now spent in a Resource Center and other common environments, the library, cafeteria and a district swimming pool,  where Conor interacts with other students and staff. He recently attended a school outing at the Kingswood bowling facility.  His educational assistant brought headphones but they were not needed and Conor bowled with the other students and had lots of fun. 

Conor is 15 and his progress in being able to function in environments with lots of noise and activity has been substantial.  Yesterday it included Jack Black and a cast of prominent actors providing voices for a movie which Conor enjoyed ... almost as much as I did. 

Sunday, May 29, 2011

Dear USA: This Canadian Father With a Severely Autistic Son Says Thank You for Combating Autism

"in order to continue meeting the needs of people with autism, the Combating Autism Act
must be fully reauthorized. We still have a long way to go. Working collaboratively with
important partners, the Affordable Care Act and the Combating Autism Act will allow   
 us to research and develop and refine vital treatments

Kathleen Sebelius,  US Secretary of Health and Human Services, April 25, 2011

Autism is a severe and limiting medical disorder for which treatments and cures must be found through solid, focused research.  Autism is a disorder which should be combated so that those who suffer from it can live fuller, more independent, lives. Here in Canada we do not have a serious, focused national autism strategy or recognition of the need for a national effort to combat autism disorders.  We are lucky that our  neighbors in the US have had the good sense and determination  to try and address and combat autism disorders through research  efforts under the Combating Autism Act.

This Canadian  thinks of many things when I think of the USA.  Some of these things are negative. Most are positive, very positive. I think of our neighbors as confident, freedom loving people who constantly seek to better themselves. I think of Americans as people with strong commitments to family.  I think of Americans as people who are afraid of no challenge as amply demonstrated by the audacious and successful commitment by former President John F. Kennedy to put men on the moon by the end of the 1960's.  Autism is a serious disorder which impairs and restricts the lives of those who suffer from it.  The continued efforts in the US, under the provisions of the Combating Autism Act, have helped direct research toward understanding and finding treatments and cures for autism.  It is of great  importance for everyone affected by the serious challenges of autism, including Canadians, that those efforts, and the Combating Autism Act, continue.

This Canadian father with a severely autistic son says thank you to our American friends for the efforts made under the Combating Autism Act.  I  hope you decide to continue this important undertaking. It may not be as glamorous as putting men on the moon but, for many affected by autism and their families, it is of fundamental importance.

Saturday, May 28, 2011

Medical Model of Autism Embraced by Neurodiversity Blogger Kev Leitch?

- Comment by Neurodiversity Blogger Kev Leitch of LBRB on the recent paper indicating that children have been compensated for what, based on an analysis of the symptoms, appear to have been autism disorders.

Neurodiversity, to the extent that it has any meaning at all, opposes the medical model of behavioral and intellectual disorders.  Kev Leitch of LBRB has been a prominent Neurodiversity autism blogger.  It came as a pleasant surprise to me to see that Kev does in fact accept that autism is a medical disorder despite his ND leanings.  Kev has always been solidly in the autism is a gift ND Camp ( Or as Estee Klar argues autism is a joy):

To cure what? Good question. Some believe that autism and its attendant comorbidities are interchangeable. That constipation and a different way of looking at things are the same thing. That dyspraxia and a lack of imaginative ability are the same thing. Others believe that the two things are quite separate. That the comorbidities that are attendant with autism in some people cannot be used to define autism. That the condition of being autistic bequeaths gifts as well as troubles (and it does bequeath troubles, lets not pretend it doesn't) and that keeping the troubles is a small price to pay for keeping the gifts.
Kevin Leitch"

It is difficult for me to rationalize the view that autism is a gift with the concept that autism is a medical disorder for which one must receive a medical diagnosis  before being considered autistic.  Admittedly I lack Kev's intellectual flexibility.  He might well be able to reconcile these diametrically opposed concepts but I can't do that.  I can't embrace two diametrically opposed concepts as both being true.  I have always viewed Neurodiversity ideology as inherently irrational.  

If autism is a gift why does someone have a medical  diagnosis? People don't seek medical attention because they have a gift.  We sought medical attention for our son 14 years ago because, even at 15 months of age, it was clear that he was not developing ordinary speech for a child his age and was not even acknowledging our presence when we tried to play games like peek a boo with him.  We were not seeking an autism diagnosis for him, I did not even know what autism was.  We wanted to know if he had medical issues. Ultimately after observation and testing he was diagnosed with an autism disorder.   Our son is a gift. We enjoy our every minute with him, even the challenging times. But his autism disorder itself is not a gift. It is a medical disorder which limits very seriously his ability to enjoy an independent life or to understand the world in which we live.

I can not reconcile the concept of a medical disorder, obtained because of serious functional and developmental limitations, with the concept of a gift.  Perhaps ND ideologue Kev Leitch is finally moving away from his embrace of the contradictory mess known as  Neurodiversity.  Perhaps.

Monday, May 23, 2011

Asperger's is the New Autism: No Intellectually Disabled Allowed in the DSM-5's New Autism Spectrum Disorder

"the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the Centers for Disease Control and Prevention. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development. Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

Dr. Marshalyn Yeargin-Allsopp, Canadian Medical Association Journal,CMAJ • July 13, 2010; 182 (10). First published June 7, 2010; doi:10.1503/cmaj.109-3274  

Dr. Yeargin-Allsopp's description of the diminution of autism's vast majority, those with intellectual disability, is noteworthy today as we await the commencement of the DSM-5 era and the complete elimination from any autism diagnosis of persons with intellectual disabilities. That accomplishment will be achieved by the DSM-5's New Autism Spectrum Disorder definition and diagnostic criteria which expressly exclude an ASD diagnosis in instances of general developmental delay:

The New Autism Spectrum Disorder in the DSM-5 will eliminate any debates over the exent of intellectual disability amongst those with autism spectrum disorders.  The new definition will complete the process begun in the DSM-IV of diminishing the rates of ID amongst those with autism by changing the definition of autism to exclude those with intellectual disability.   The formula is simple and straight forward.  To be diagnosed with autism a person must meet all 4 criteria, A, B, C and D.  Criteria A requires the presence of "persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays".   If a person suffers from "general developmental delay" that will account for persistent deficits in social communication and social interaction across contexts and the person will not meet the mandatory Criterion A and will not  receive an autism spectrum diagnosis under the new DSM-5.

General developmental delays is a reference to the DSM-5 diagnostic category of Intellectual Developmental Disorder (IDD) which is described as including a current intellectual deficit and a deficit in adaptive functioning.  IDD is further described in two of the mandatory criteria for meeting and IDD diagnosis  as including deficits in general mental abilities. IDD mandatory criterion B refers expressly to impaired functioning in areas of daily life including communication and social participation.  An IDD diagnosis then would account for deficits in social communicaiton and social interaction and preclude an Autism Spectrum Disorder diagnosis under the DSM-5

 The exclusion of an autism diagnosis for persons who are generally developmentally delayed is a substantive change from the DSM-IV  which did not exclude an Autistic Disorder diagnosis in persons who suffered from  general developmental delay, intellectual disability or mental retardation:

The exclusion of persons with Intellectual Developmental Disorders from the New Autism Spectrum Disorder does have a precedent in the DSM-IV.  It is found in the DSM-IV's Asperger's Disorder which states in Criterion E that "there is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills".  And there it is "no cognitive development delay" from the DSM-IV Asperger's Disorder criteria becomes not accounted for by general developmental delay in the DSM-5's Autism Spectrum Disorder.   Asperger's becomes the New Autism in DSM-5 World.

Autism Speaks has long been aware of the APA intention to remove persons with intellectual disability from consideration for autism spectrum disorder diagnoses. Autism Speaks rarely mentions intellectual disability as an autism concern.   It has already been busy presenting Asperger's to the public as Autism  with the promotion of the careers and influence of John Elder Robison and Alex Plank.

Autism Speaks also helped fund the Korean "autism" prevalence study of Roy Richard Grinker who has been busy recasting Asperger's as autism and who went looking for "autism" amongst Korean students who functioned well in Korea's highly structured school environments.  No intellectually disabled were included amongst Grinker's findings of  large numbers of previously unknown autistics.  Of course Professor Grinker, the APA and "Autism Without Intellectual Disability Speaks" will have to readjust their autism prevalence numbers once the DSM-5 officially takes effect.  They will have to revise their autism rates downward to reflect the removal of persons with DSM-IV Autistic Disorder and intellectual disability from the DSM-5's Autism Spectrum Disorder.  Asperger's is the New Autism. 

Saturday, May 21, 2011

Killarney Lake Autism Therapy? No, Just Fun for Conor and Dad

I am sure that riding horses in Mongolia would be fun, and would probably help sell some books and other nifty promotions, but I don' think such an adventure would qualify as an autism therapy.  Yesterday, here in Fredericton, New Brunswick, the weather was warm if slightly overcast.  The trails were in great shape at Killarney Lake and I headed over with Conor for our first Killarney Lake outing of 2011.  Therapy? No. Therapeutic? Maybe, more so for Dad than Conor. We both definitely enjoyed the adventure.  

We had fun, pure and simple.  When Conor decides to set the pace Dad can only scramble to keep up. Sometimes though my Buddy turns and waits for his slower stepping Dad to catch up. We are looking forward to many return visits to Killarney Lake this year.

Thursday, May 19, 2011

Autism Can End Lives: Wandering and Drowning

Those  who don't believe that autism can be a deadly disorder, who believe that wandering from home and drowning  is not a problem that should be associated with autism, will want to skip reports of yet another death by drowning of an autistic child that wandered from the safety of his home.  This time the drowning occurred in Cushing, Oklahoma. As reported on Oklahoma's Own,  NewsOn6.com the child's death has been ruled accidental after investigation by the Department of Human Services and the State Medical Examiner's Office:

"Death Of Autistic Boy In Cushing Ruled Accidental ... criminal charges will not be filed as a result of the death of 4-year-old Blake Murrell.  Murrell drowned in a pond within Memorial Park in Cushing on April 19. His body was found hours after he was reported missing from the family's home nearby.
The D.A.'s office says a thorough investigation was conducted by the Cushing Police Department, the Department of Human Services and the State Medical Examiner's Office. A statement released by Lee's office states "the evidence gathered does not justify the filing of criminal charges. The evidence indicates this was an unfortunate, tragic accident."

Sunday, May 15, 2011

Low Functioning Autistic Persons Remain Invisible on CNN and in the DSM-5's New Autism Spectrum Disorder

Elizabeth Landau, a CNN Health writer/producer, mentions briefly the DSM-5's New Autism Spectrum Disorder, in a report on the organizational changes in the DSM-5 in Psychiatry 'bible' structure overhauled. Ms. Landau's discussion of changes in the DSM autism classification focuses exclusively on the impact the formal inclusion of Asperger's syndrome in Autistic Disorder will have on persons with Asperger's and parents of children with Asperger's.  No mention is made of the impact on that the changed definition of autistic disorder will have on the invisible autistics, those with actual autistic disorder, often low functioning, with intellectual disabilities, who are likely to live their adult lives in some level of residential or institutional care:

"This organizational framework is trying to emphasize that we don’t have strict divisions between disorders," Regier said.

For instance, Asperger's syndrome, a high-functioning form of autism, instead of being its own diagnosis, would now fall under the broader “austism spectrum disorders.” This move has some parents unhappy because "autism" sounds scarier than Asperger's, which has taken on its own identity in that community, and because children with Asperger's have specific educational needs that are different from kids with more severe autism.

But the association has heard from other parents frustrated that their children with Asperger's are denied special education benefits reserved for autism, Regier said. And biologically speaking, Asperger's is a form of autism, doctors say.

CNN, of course, is not unique in excluding mention of those with autistic disorder, particularly those severely affected by autism disorders, while discussing changes to the DSM autism diagnostic category.The process started in 1994 with the DSM-IV. The DSM-IV revision included a de facto inclusion of Asperger's with Autism in the Pervasive Developmental Diosrders.  The new revision completes that process and waters down further the requirements for a diagnosis of autism. 

As previously noted by CDC autism expert Dr.  Marshalyn Yeargin-Allsopp the DSM-IV definition change, amongst other accomplishments, lowered the rate of persons with autism AND intellectual disabilities ... by expanding the definition of autism to include persons who were by diagnostic definition not intellectually disabled.  Autism's "vast majority" to quote Dr. Yeargin-Allsopp became a large minority.  With the new changes more persons without intellectual disability will be diagnosed as autistic under the watered down definition.  The APA will have taken another large step toward lowering the rates of persons with autism and intellectual disability, not by helping to improve the condition of those persons but by redefining them to a  smaller corner once again. 

It will be easier for APA members, and other health professionals,  to ignore low functioning autistic persons as they become a smaller and smaller percentage of the DSM's New Autism Spectrum Diosorder.  It will  also be  easier for Autism Speaks to continue its feel good "autism" fund raising by promoting  the careers of very high functioning persons with Aspergers, like John Elder Robison and Alex Plank, as the faces of autism when their diagnoses are officially changed from Aspergers to Autism Spectrum Disorder. And it will be easier for Autism Speaks to retain its status as Autism Without Intellectual Disability Speaks.

Meanwhile the vast majority of those currently diagnosed with Autistic Disorder, those who also have intellectual disabilities, those with low functioning autism disorders, will become even more invisible to the public eye. 

Saturday, May 14, 2011

You Want Some Autism Awareness? Autism Is A Disorder, Autism Can Restrict Lives, Autism Can End Lives

The site where Adam Benhamama's body was found Tuesday, 
several kilometres downstream from where police believe he 
fell  into  the water  in early April. (Elias Abboud/CBC)

Two incidents in recent days have driven home, once again,  for Canadian parents of autistic children the harsher realities of autism. An autistic boy was banned from  school in Etobicoke because of his autistic challenges even though the school  had not provided autism trained assistants and the body of a young autistic boy, Adam Benhamama, was found and identified after he had been missing for several weeks and, as feared, was found to have drowned.  

News of such events may come as a surprise to many in the public for whom autism is seen as just a different personality type, a misconception created by the rhetoric of the persons, some of whom have no actual autism diagnosis who describe autism as a different, even superior, way of life. In Canada, the misrepresentation of autism disorders is so widespread that even a prominent politician like Conservative heavyweight James Moore has stated publicly that autism is not a disability. 

Autism has not always been the autism of Michelle Dawson, Ari Ne'eman, John Elder Robison or Roy Richard Grinker.  At one time, before the word "autism" became a badge for some very high functioning persons who identified with the word autism, it was known for what it was, a neurological disorder that restricts the lives, can even end the lives, of those who suffer from it.  Like many parents of children severely affected by actual Autistic Disorder, I  have watched in dismay as  successful, high functioning persons have appropriated the label autism and misrepresented it to the public, in the process obscuring the harsh realities endured by those with actual, classic low functioning Autistic Disorder.

A number of years ago we almost lost our  son, diagnosed with Autistic Disorder, assessed with profound developmental delays, when he wandered from our home and crossed busy nearby streets, including the bustling parking lot of a nearby drinking establishment while I was distracted by a business call at home.  I can not mention this incident without giving public thanks to the unknown and caring man who got out of his vehicle and took my son, who was blocking traffic in a nearby street, to a local convenience store where the police were called. The gentleman waited until I arrived before turning abruptly, without identifying himself, and without waiting for a thank you, and left the store.

The intense feelings of that day, the  fear, the guilt, the enormous relief on knowing my son was safe ... the gratitude to his unknown benefactor ... will never leave me.  Nor can I ever buy into the dangerous nonsense peddled by those who build careers for themselves portraying autism as anything but what it is .... a disabling disorder which can restrict and even end lives.  

Tuesday, May 10, 2011

Should Grinker and Co's Flawed South Korean Autism Study be Taken Seriously?

The newly reported autism study from South Korea with its "shocking" 1 in 38 autism rates figure doesn't make much sense. As reported in the Boston Globe:

"Roy Richard Grinker, a cultural anthropologist at George Washington University who worked on the study, said his own child with autism would probably function very well in such a system.

"Many kids with autism who are doing well can adapt to that highly structured situation," he said.

So, what does this finding mean for the United States?

Not necessarily much, according to several researchers who were not involved in the study. They praised the study generally, but pointed out flaws and assumptions that raise questions about whether there really are so many kids with autism in South Korea -- and by extension, in the United States.

Dr. Isaac S. Kohane, a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School, said he thinks the researchers may have taken their estimations too far by assuming that the rate of autism was the same among the nearly 700 families who declined followup assessments for their children, as among the ones who agreed. Wouldn’t a parent worried about a child be more likely to participate than one with no concerns? Without this assumption, Kohane says the researchers would have found roughly the same 1 in 100 prevalence we see in the United States.

Also, the definition of "autism" is so squishy today that it’s very hard to draw the line between autistic and non-autistic, he and other researchers said."

I am the father of a low functioning son with Autistic Disorder and I am not a fan of Roy Richard Grinker's involvement in defining autism and autism prevalence estimates. Grinker is the father of a high functioning child with Asperger's who favors the New Autism Spectrum Disorder definitions of the DSM-5.

I don't know why an anthropologist with strong biases was involved in an autism prevalence study in South Korea. I am not surprised though if a Grinker involved study found higher rates of autism ... particularly if the autistic persons found to have been missed were very high functioning.

Regardless, Dr. Kohane a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School has pointed out some serious flaws and assumptions involved in the study. Hopefully other serious professionals will examine the study and consider Dr. Kohane's comments before promoting the 1 in 38 study from Grinker and Co.

Monday, May 09, 2011

Wheeling & Dealing & Avoiding FDA Scrutiny at the Vaccine Business Industry (Big Pharma) Congress

The vaccine industry business congress  referenced above states that it is scheduled for Baltimore in the fall of 2011 although the agenda indicates dates in March 2011.   More significantly the first items on the agenda show clearly the priorities of Big Pharma, as the conference brochure itself refers to the vaccine industry, which are maximizing government sponsored funding and avoiding FDA scrutiny.  Great stuff.

Yes, the Congress brochure does refer, several times, to Big Pharma, so don't go all Orac berserk on me for using that expression.

No word on whether  Offit, Orac, Mnookin or Deer were/will be in attendance.

Sunday, May 08, 2011

Autism Research After the DSM5? At Least Grinker Will Be Happy

Will the DSM5 render meaningless all autism research to date? Will the DSM5 make it impossible to determine whether autism disorders are increasing or whether they are triggered or caused by environmental factors? The odds are good, given the difficulties in answering these questions resulting from the expansion of "autism" disorders in the DSM-IV and DSM-IV-TR to include Asperger's, that our understanding of autism prevalence and causation will be hampered substantially, and perhaps totally undermined, by yet another revision of the autism diagnostic categories in the DSM-5.  Even our understanding of what autism is will likely change, again, as a result of the DSM-5 revisions.  The intellectual disabilities that characterized the vast majority (Yeargin-Allsopp) of persons with classic autism will now be totally  replaced by the "socially quirky" model of autism.

Autism is now recognized globally with a World Autism Awareness Day each April 2.  While the day is used for autism fund raising, and celebrating the color blue,  it does little to actually raise awareness about the nature of autism, the numbers of persons with autism disorders, or the causes or treatment of autism.  Amongst the leading factors that contribute to our inability to qualitatively improve our understanding of autism disorders is the changing diagnostic definition of autism, increased social awareness and according to some at least, the widescale availability of autism treatments and education accommodations prompting diagnostic substitution by professionals, often prompted by parents.

Roy Richard Grinker is one of the best known advocates of the "don't worry, be happy" autism is not really increasing school of thought.  A 2007 copyright summary of Grinker's  book Unstrange Minds tells us all what was really happening with autism increases ...  in Grinker's opinion:

"Unstrange Minds shows how the shift in how we view and count autism is part of a set of broader shifts taking place in societies throughout the world. The growth of child psychiatry, the decline of psychoanalysis, the internet, the rise of international advocacy organizations, greater public sensitivity to children's educational problems, and changes in public policies have together changed the way autism is diagnosed and defined.

Societies are becoming more aware of children's behavioral and learning differences at earlier and earlier ages and more comfortable with diagnosis, medication, and psychiatric labels. Under the rubric of autism we now find a multitude of emotional and cognitive problems, problems that used to be given other diagnostic labels or that were even considered within the range of the normal. Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools in the United States, which first started using the category of autism during the 1991-1992 school year, are reporting it more often, developing ways to help children with autism, and directing parents to appropriate resources. Epidemiologists are also counting it better.

As a result, the statistics on autism that we have today - 1 in 166 -- are the most accurate we've ever had."

 The 2007 summary was written more than a dozen years after the last diagnostic definition change for autism disorders in the DSM manuals.  Yet the CDC recognized rates have moved upward twice since then to 1 in 150 and most recently to 1 in 110.  I am no cultural anthropologist but with a change from 1 in 166 to 1 in 110 it seems fool hardy to simply assume that the increased rates of approximately another 50% in 4 years are accounted for solely on the basis of diagnostic and social ascertainment factors. 

It is worthy to note that the IACC has acknowledged that the almost 100% dedication of autism funding toward genetic focused research has come at the cost of needed environmentally focused research, that the current thinking is that autism arises from the interaction of genetic and environmental factors (hardly a radical concept) and that the IACC view is that the social and diagnostic changes account for only approximately 50% of the dramatic increases in reported cases of autism disorders.

It seems that, finally the feel good, autism is 100% genetic and is not really increasing view of the Grinker (and Neurodiversity) model of autism is about to be seriously challenged and hopefully researched.  But wait a minute ... along comes another autism diagnostic revision in the DSM-5. 

PREDICTION: The DSM-5 autism diagnostic revisions will once again be used to cloud and confuse our understanding of autism rates and causation.  Many concerned parents and concerned professionals will be  Out of Luck in hoping for more understanding of autism.  Roy Richard Grinker, however, and those for whom exploration of potential environmental causes of autism are a nuisance, should be happy that Grinker's 100% genetic, stable model of autism will be protected from serious research challenges for decades to come.

Saturday, May 07, 2011

Autism and the Stigma of Intellectual Disability: Some CDC Facts

CDC:  Intelligence quotient (IQ) of children aged 8 years with an autism spectrum disorder (ASD) for whom psychometric test data were available,* by site and sex (IQ) score-Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2006

Last week some "autism" blog sites on the internet launched more personal attacks against me for daring to again correct the myth that ALL, or MOST, autistic persons are characterized by high intelligence.  I am not going to respond to the silly comments directly.  I will refer anyone who is interested in the subject and who  wishes to look at autism disorders realistically to the Centers for Disease Control and Prevention site which states that:

"A report published by CDC in 2009, shows that 30-51% (41% on average) of the children who had an ASD also had an Intellectual Disability (intelligence quotient <=70)."

The above information from the CDC is referring to ALL persons with ANY Autism Spectrum Disorder including those with Asperger's Disorder.  By definition Asperger's excludes diagnosis where the person has cognitive impairment.  For classic Autistic Disorder the average number of persons with an Intlellectual Disability or Cognitive  Impairment would obviously be much higher than the 41 % average for all persons with ANY Autism Spectrum Disorder.  

Perpetuating the myth that persons with autism disorders tend to be of high intelligence does not help the vast majority of those with classic Autistic Disorder who have Intellectual Disabilities.  It reflects a desire to disassociate autism from intellectual disability. Autism is seen as good or at least acceptable.  Intellectual Disability is seen as bad.

Perpetuating the myth of autism and high intelligence  stigmatizes those with autism and intellectual disability.  

Friday, May 06, 2011

Time Flies And So Does Conor - Dad's Run Jump Fly Boy

The first two pictures show Conor today  at 15 and the last four show him 4  years ago at 11.  He is no longer the baby faced boy in the bottom pictures.  He is a young man.  But ... he is still Dad's Run Jump Fly Boy ...  full of energy and spirit. It is a gift he shares with his Dad.

Wednesday, May 04, 2011

Harper Majority Means No Real National Autism Strategy 4 At Least 4 More Years

Photograph by: Blair Gable, Reuters

Canadians are waiting to see what Stephen Harper does with the very solid majority that Canadians voted to give him on Monday.  One thing they will not have to wait for during the Harper majority years is a Real National Autism Strategy.  I am not a fan of Stephen Harper and I do not trust him on important issues like health care.  What I do not question is his opposition to any serious role for the federal government in ensuring that autistic children and adults across Canada receive effective evidence based treatment for autism,  a real education or decent, autism specific residential care. 

Citing Constitutional grounds Harper's team led by Mike Lake, father of an autistic son,  have consistently refused to get involved in any meaningful effort to help autistic Canadians.  The recent declaration by prominent British Columbia Harper cabinet minister James Moore that autism is not a disability calls into question Mike Lake's autism awareness efforts within his own party but leaves no room for doubt.  There will be no help for autistic Canadians, no Medicare for Autism, no Real National Autism Strategy during a Harper administration.  Any efforts to bring about a Real National Autism Strategy must look to the future until after the Harper majority has run its course.

Monday, May 02, 2011

Liberal Stewart McGillivray Also Confirms Conservative James Moore's Autism Is Not a Disability Statement

More Confirmation!

Liberal Stewart McGillivray, who also participated in the candidate's forum in which Conservative James Moore made his "autism is not a disability" statement, has, along with NDP Mark Ireland, also confirmed that Moore did indeed make the "autism isn't a disability" statement. The two candidates confirm the information posted on the Medicare for Autism NOW! message board  by Elaine Willis, who was at the forum  and asked the autism medicare question that led to Mr. Moore's statement.  Mr. McGilliivray's confirming email was forwarded to my attention:

Conservative James Moore Autism Is Not a Disability Statement CONFIRMED by NDP Mark Ireland


Conservative James Moore's statement that autism is not a disability has been confirmed by NDP candidate Mark Ireland who participated  in the forum at which Moore made the statement.  Mr. Ireland posted a message to my blog confirming that Moore made the statement and he also tweeted the confirmation to Ben Brisebois:

Sunday, May 01, 2011

Harper Government's Autism Awareness Regression

I have attached an email and  blog comment I posted on May 9, 2007 addressed to Prime Minister Stephen Harper in which I expressed the hope that he would open his heart (I assumed he had one) and his mind (I didn't know it was locked solid) and help autistic children wherever they reside in Canada. 
Since this comment in 2007 the numbers of children estimated to have an autism spectrum disorder have increased, by CDC estimates, from 1 in 150 to 1 in 110.  
As recently as this election campaign James Moore of BC, a cabinet minister in the Harper cabinet, has expressed the views that autism is not a disability and that persons with autism are simply an interest group.  
Notwithstanding the presence  in the federal Conservative party of Mike Lake,  a dedicated father of an autistic 15 year old son,  the Harper government  understanding of autism disorders has regressed since my 2007 letter.
May 9, 2007
Prime Minister Stephen Harper
Dear Prime Minister
I am writing to you as the father of a severely autistic 11 year old boy living in Fredericton, New Brunswick and as an autism advocate for the past 8 years here in New Brunswick. Recently I was disappointed, bitterly disappointed, by two actions by your very tightly controlled government – the rejection of MP Shawn Murphy’s motion to amend the Canada Health Act to ensure autistic children, wherever they reside in Canada, would receive government funded treatment for their autism. Canada as a nation has long ago rejected the notion that accidents of geography should determine whether Canadians receive life sustaining or life enhancing medical treatment.
The arguments about constitutional jurisdiction advanced in justification are specious and you sir, with all due respect, know that. Canada has long operated on the basis of a model of cooperative federalism which has developed many legislative tools to ensure that narrow constitutional boundaries do not impair the quality of life in this great country. I will mention no specific examples because there are far too many for this to be a serious issue of contention.
Autism is a serious neurological disorder borne by 1 in 150 Canadians by currently accepted estimates. It also impacts on the lives of parents, siblings, grandparents and other caregivers. There is no known cure but there is a widely acknowledged, evidence based treatment available, Applied Behavioural Analysis, or ABA, which is supported by literally hundreds of studies, including recent studies, which document the effectiveness of ABA in improving the IQ, the linguistic skills and comprehension, the ability to function in the real world, of children with autism. In my son’s case, even with the limited ABA therapy which was available in New Brunswick at the time because of a shortage of trained personnel, he has made tremendous gains. From a child who could only scream and tantrum he became a child who can communicate using words, who is reading, albeit at a level below his chronological age, and who in fact almost daily pulls out books on his own initiative to real aloud for his own enjoyment. This is the ABA which parents seek across Canada, the USA and the world for their autistic children.
There are those who oppose ABA based on personal preferences, outdated and ill founded misconceptions about what ABA involves and quite simply on the basis of paranoid, conspiratorial beliefs that somehow they as human beings, as functioning adults, will be deprived of their personalities if someone else’s autistic children are taught fundamental living skills by use of ABA. They make stretched and tortured arguments about ABA turning children into robots. This is nonsense as they happy joyful pictures of my son which I will provide a link for in this letter can rebut with finality. They also make disingenuous attacks on the studies which have documented ABA based gains for autistic children ignoring the fact that literally hundreds of such studies exist all showing substantial gains. Critics also focus on costs of providing ABA ignoring the studies that have shown the huge financial savings to government in reduction of service provision over the lives of autistic persons who have benefited from ABA.
I do not actually expect you to personally read this email Prime Minister. I hope though that a conscientious staffer or, through the marvel that is the internet, a family member or friend, will see fit to read this and implore you to take action on behalf of Canadians with autism. You can make a difference in the lives of 1 in 150 Canadians Prime Minister. You can make a difference in the lives of their loved ones and care givers and you can save Canadian governments enormous sums by reducing the level of services required as a result of early intensive ABA intervention.
Please open your mind Prime Minister, open your heart, and do the right thing.
Harold L Doherty
Fredericton New Brunswick