Discussing Intellectual Disability and Autism Invokes Hostility: The Laurence Arnold Example

"The difference with us and Harold Doherty for instance, is that do not draw a line above a notional IQ of 70, or a given level of functional speech and say, I don't care about the rest of you. We care about everybody."

Laurence Arnold,  In Regione Caecorum Rex Est Luscus, May 10 2010 

  I don't know what facts, if any, that Larry Arnold bases his conclusions on. I don't know how he has concluded that I do not care about high functioning persons with autism spectrum disorders.   For the record though he is wrong.   

As a member of the Autism Society of New Brunswick I  worked with a gentleman with Aspergers who was a major contributor to our organization and to the Canadian Senate committee that examined a number of autism issues in Canada.   I consider him a friend, from whom I learned much and have great respect for what he has accomplished. As a lawyer I have provided legal services to some persons with autism disorders, including Aspergers,    on a pro bono basis.  Since Laurentius Rex is fascinated with Latin he will know that pro bono is derived from the Latin "for the public good" and means in everyday language without compensation or free of charge.

I am not offended by Mr. Arnold's comment even though it is wrong.  It will be accepted without questioning by other members of the Neurodiversity  ideological segment of the  autism community.  Others will not even notice it.    I have had many nastier comments made about me than that by members of  the  "Neuordiversity" community.   

I include Mr Arnold's comment for two reasons. The first is  the relatively civil  language used. The second, but more important reason, I highlight Mr. Arnold's comment  is that it illustrates the anger felt by many persons with Autism Spectrum Disorder diagnoses and  high functioning abilities toward any mention of Intellectual Disability in connection with autism.   I write often about the very clear association between Autistic Disorder and Intellectual Disability.   That is enough to invite  personal attacks and   has invited some angry responses in much less civil language.

To me it is obviously more than just co-morbidity, more than just  mere coincidence, when 75-80% of persons with Autistic Disorder also have Intellectual Disabilities. Simply pointing that out is enough to invoke hostility, even gently expressed hostility, from members of  the Neurodiversity community. Laurence Arnold doesn't approve of my discussion of Autism, specifically Autistic Disorder, and Intellectual Disability.  He is not alone in his disapproval.   

Mr. Arnold is free to react with hostility to my discussion of these related conditions.   He will be joined by others less civil in language than he but I will not be dissuaded.  I will continue to talk openly and honestly about Autistic Disorder and Intellectual Disability. 

CDC Facts: Autistic Disorder and Intellectual Disability

Honest discussion of many autism subjects will invite hostility from different quarters of the alleged autism community. One example is the connection between Autistic Disorder and Intellectual Disability.  Few will even discuss the obvious fact that many persons with Autistic Disorder are also Intellectually Disabled.  Attempts to discuss Autistic Disorder and Intellectual Disability are met with overt hostitlity even though Intellectual Disability is a fact of classic autism or Autistic Disorder:.

The CDC Autism Spectrum Disorders (ASDs) Facts section of the CDC web site states this fact simply and clearly:

Autistic Disorder (also called “classic” autism)

This is what most people think of when hearing the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability. 

(emphasis added -HLD)

With the expansion of the definition of autism in the 1994 DSM-IV the concept of autism has come to include many very intelligent, high functioning persons as autistic and the intellectual disability component of autistic disorder is erroneously but intentionally set aside as a "comorbid" or "coincidental" condition, a process that will be worsened with the New Autism Spectrum Disorder category in the DSM-5.  The obvious connection between autism (pervasive developmental delay) and intellectual disability will be pushed even further from our consciousness.  

What Will the Public Know About Autism After the 2011 Ride Across Canada for Autism Spectrum Disorder?

The Ride Across Canada For Autism Spectrum Disorder, 2011  has elicited support from a number of prominent autism organizations in Canada and the United States including, as listed by web site info on the Ride Across Canada Facebook page,  autismcanada.org, autismsocietycanada.ca, autismontario.com, racing4autism.ca, autism-society.org and generationrescue.org.  It is also endorsed by some very strong and credible autism advocates that I have either met personally or via the internet, people whom I genuinely respect and appreciate for their hard work and commitment to helping  people with autism disorders in Canada and around the world.  This looks like an outstanding project being undertaken to raise autism awareness and I wish every success for it but, because we are talking about autism,  imbued as it is with so many controversies, I ask what kind of awareness will be raised and what specific goals will be targeted with this effort? 

One of the Facebook supporters for the Ride Across Canada for Autism Spectrum Disorders is Jonathan Howard who knows a thing or two about crossing Canada for autism having done exactly that when he ran across Canada.  I met Jonathan when he stopped in Fredericton and he is an outstanding young gentleman who has given much for others and will undoubtedly continue to be a major contributor, helping other people, for many years to come.   I have no doubt that the forthcoming Ride for ASD's will make more people hear of autism as they did with Jonathan's run but what exactly will they learn about autism and what needs of persons with autism disorders will be brought closer to completion anywhere in Canada by this project?

 

My comments are not meant in anyway as a criticism. I commend organizer Scott Carpenter and I genuinely have a good feeling about this effort which has attracted strong support out of the gate.  My comments are meant to ask what specifically will be said about autism disorders with this great effort? What will Canadians learn about autism realities beyond the feel good tripe routinely circulated in the mainstream media about autistic savants and autism successes stories exemplified by the incredible Temple Grandin?

 

The title of the project is a good start.  I no longer believe that there is one single autism disorder.  I believe that there are many different autism disorders.  Still for the public to learn that autism is a disorder, or a number of disorders,  is a very good start and will help break through the feel good nonsense of those who would tell us that autism is a joy and a blessing that we should embrace. 

It will be important for the public to hear the whole truth about autism spectrum disorders.   While there are indeed some very high functioning autistic persons who have been very successful and contributed much to society there are many  persons with low functioning autism and intellectual disabilities some of whom injure themselves very seriously and some of who wander away never to be found alive.  The public should know that there are many adults severely affected by autism disorders who spend their lives lonely and living in institutional facilities far removed from families.   The public should know that right now, at this very instant, we are in dire need of funding for adult residential care and treatment facilities that will allow all adults with autism disorders to live a decent, happy life closer to family and community.

 

The public should know that, to date, only ABA enjoys a solid base of evidence in support of its effectiveness as an autism intervention that actually helps autistic children.   This does not necessarily mean that other biological and dietary approaches do not actually help improve the conditions of autistic children.  What it does mean is that the research to support their effectiveness is still lacking or disputed at this time.  The public should know that research is needed to provide the evidential support for more autism interventions, to help us understand all causes of autism disorders genetic AND environmental as we search for  more treatments and .... for the cures of autism disorder that do not presently exist.

 

The Ride Across Canada holds out considerable promise for raising autism awareness.  I wish it every success and hope that the Ride generates awareness about the real challenges of autism disorders, the real needs that must be met and .... the focus on specific goals that must be met in order to actually get something done to help improve the lives of Canadians with autism disorders.

 

Good luck Scott and may fortune favor this worthy project.

Offit Offensive Has Failed, Vaccine-Autism War Continues, Child Vaccine Refusals Increase in U.S.

Breaking News Update:


I had just posted this comment when I read the CP Breaking News update Parents with more education less likely to let their daughters get HPV shots featuring extensive commentary by Field Marshal Paul Offit the man with great vaccine credibility ... with the main stream media ... not so much ... maybe none at all ...  with parents, including apparently better educated parents.  Personally I think including Paul Offit in an article about vaccine safety is counter productive if parents are the audience that authorities are trying to convince. The article despite the education levels of the parents, blames the internet for leading these parents to question public health authorities pronouncements on vaccine safety.  As always the possibility that parental concerns might be legitimate is not referenced in the article.  The Offit Offensive ... the insanity ... continues.

 
The latest news from the Vaccine-Autism front is summarized succcinctly in the CBC headline Child vaccine refusals increase in U.S. The article reports on the study by Philip Smith and his colleagues of the U.S. Centers for Disease Control and Prevention in Atlanta which found that "between 2003 and 2008, the percentage of parents who refused or delayed vaccination doses "increased significantly from 22 per cent to 39 per cent."  Authorities will scratch their heads over this information, will wonder how they can get through to those stupid, ignorant, hysterical and ill informed parents who do not accept their dictates about what is best for their children.  They will continue to follow the same insane strategy of trying to convince parents, while insulting them,  that all vaccines, and all vaccine ingredients are always safe no matter how many times they are given and no matter what contrary information they might stumble  upon.  

What the authorities will not do, can not do, is acknowledge that they have not always been forthright in addressing public concerns and that they have ignored credible health professionals who in fact do have questions about the state of the "science" on vaccine safety particularly as it pertains to autism. 

If anyone from American or Canadian public health offices reads this blog commentary and decides that what I  say in this comment is typical "anti-vaxxer" nonsense they should know that I have two sons all of whom have received all of the recommended vaccine shots. I have never attributed my youngest son's severe autistic disorder to vaccination although I do have an open mind on the issue now.  I do not  believe the rhetoric of the failed, and insane, strategy of public health authorities and mainstream media giants who simply dismiss parents, health professionals and researchers who question whether "science" has actually determined for all time that all vaccines are always effective and safe.  The strategy has failed and yet the strategy continues to be relied on by the same authorities and media giants hoping for a different result.

On January 24 2009 in Einstein's Reply to Paul Offit I questioned the rationality of public health authorities and professionals who keep following the same failed strategy to convince parents to vaccinate their children and expecting to see different results.  I set out two quotes as an introduction to that comment:

"These outbreaks have not, apparently, been sobering. If anything, the number of parents choosing to delay or withhold or separate vaccines is increasing. So what will it take?

Paul Offit

Insanity: doing the same thing over and over again and expecting different results.

Albert Einstein"

It is now 16 months later and Paul Offit and company keep doing the same thing over and over and over again and keep expecting to see different results. The insanity has not ended and there are no signs that it will. There are no signs that  public health officials or the mainstream media will abandon the Offit strategy which has been an utter failure.  The increases in vaccine refusals are clear indicators that it is insane to keep following the Offit strategy and expecting a different result.

Insulting Jenny McCarthy and other parents fighting for their children will not work.  Let me repeat that one since it is quite simple yet difficult for Offit and company to grasp: insulting Jenny McCarthy and other parents fighting for their children will not work.

Ignoring health professionals and researchers  like Dr. Bernadine Healy  and pharmaceutical official Dr. Julie Gerberding, both of whom have previously stated that a study comparing autism rates of existing vaccinated and unvaccinated populations could and should be done will not work. Ignoring a clinical and academic neurologist and parent like Dr. Jon Poling who has called for more environmentally focused autism research, including more vaccine oriented autism research will not work. Ignoring a researcher like Dr. Irva Hertz-Picciotto who says that the studies allegedly disproving a thimerosal autism connection are flawed and that stronger sceince is needed on the issue.

Playing politics by appointing those like Ari Ne'eman who oppose curing  autism to the IACC will not work.  Allowing an Alison Singer, nominated to the IACC by Autism Speaks, to  abandon that organization's mandate by voting against an historically crucial recommendation for the comparative autism vaccine study before jumping ship to join Paul Offit at the Autism Science Foundation, will not work. 

Parents know that the "science" on vaccines and autism is not as solid as portrayed by the Offit media armies. They know that research of vaccine and other potential environmental triggers of autism has been discouraged since the 1990's.  They know that public health authorities like the IACC have pushed the flawed thimerosal autism studies while refusing to  conduct the comparative studies recommended by Gerberding and Healy and while refusing the Hertz-Picciotto and Poling recommendations for stronger scientific research on thimerosal and other vaccine autism issues.

I am a parent who vaccinates my children but still has questions about vaccines.  I acknowledge the important role that vaccines have played in public health and disease prevention in children.  But there is a resource which is even more important in protecting and promoting the health of children and that resource is parents. It is that resource which has been subjected to unrelenting attack by the Offit armies as part of a failed and insane strategy to convince parents to vaccinate their children. 

It is long past time for the Offit armies, including the new Autism Science Foundation, mainstream media like the NYT, the Chicago Tribune, the Globe and Mail and PBS and internet foot soldiers like the blogging sites listed on the Autism Science Foundation web site to leave the field.  It is time for health authorities and researchers who understand that parents are the number one resource in child health promotion to work with parents and address their concerns instead of dismissing them. 

Will my small voice be heard and have any impact? Highly, highly unlikely.  The odds are good that a year from now, two years from now, vaccine refusals will have increased again in the US and the Offit armies will still be in the field attacking the number one child health resource ... their parents ... and hoping to see a different result.

Neil S Greenspan on Media Feel Good Portrayals of Autism Disorders

One of my frequent complaints  is with the media tendency to present "feel good" features about autism disorders while ignoring, almost completely, autism's  harsher realities.  In Autism and the Media at the Huffington Post Neil S. Greenspan, immunologist and clinical pathologist, expresses the same concern.  Mr. Greenspan comments specially on a recent NPR broadcast in which Weekend Edition host Scott Simon speculated that a number of historical figures might have had Asperger's including  Einstein, Ben Franklin, Napoleon, Lincoln and Harry Truman.  To the NPR list could be added the names of Mozart, Van Gogh and .. my all time favorite .... Jesus Christ  All have been speculated by media, authors and even academics to have been autistic.   Greenspan notes that the feel good emphasis can distort the public's understanding of autism to the possible detriment of those most severely affected by the disorder:

There is a tendency for groups that serve or advocate on behalf of those with disabilities to focus on individual success stories, even if rare, to fend off the prejudice and even hostility that sometimes arise in the general public and are directed towards those with various diagnostic labels. I saw this first hand with elements of the learning disabilities (LD) community that, at least in some instances, were reluctant to acknowledge that some kids with LD are below average in standard measures of intelligence. The upshot was that the most vulnerable members of this population actually had even fewer options than the individuals who could be presented to the broader public as pretty much "regular" kids, with their "learning differences" minimized.

A human interest story about an individual's struggles with a disability that is tied up in a pretty metaphorical bow at the end of the piece will undoubtedly attract more reader/listener/viewer attention than a more demanding discursive, analytical discussion, especially if the conclusions are not upbeat. Perhaps, it would be counterproductive to completely eliminate the uplifting narratives focused on one individual at a time, but if understanding, not just awareness, of autism is to be advanced, a bit more of the sort of journalism focused on conveying information and not just eliciting emotion will be needed.

What really jumps at me in Greenspan's commentary is the refusal by some members of the Learning Disability advocacy community to acknowledge that some children with LD are below average in standard measures of intelligence.  This is a serious issue with autism disorders where mere mention of the high numbers of persons with Autistic Disorder and Intellectual Disability can prompt angry responses.  Those who refuse to see what is in front of their faces will ignore data and statements from sources such as the ICD, the CDC and the Canadian Psychological Association rather than admit the realites of Autistic Disorder and Intellectual Disabilities.

I agree that constant emphasis on a few success stories trivializes the very real challenges faced by the many who are severely affected by autism disorders. This presents an unrealistic picture of autism disorders to the public and harms autistic children and adults.

The media should tell the full truth about autism disorders including the harsher realities  they present.  When it comes to autism disorders there is no good reason  for the media to deviate from the old maxim .... honesty is the best policy.

I commend Neil Greenspan for injecting some autism reality into the internet discussions of autism disorders.  Hopefully the good people at the CNN, CBC, NYT, New Yorker Magazine and other major media outlets that obsess with the feel good autism stories will read Greenspan's commentary and take it to heart.

Autism Disorders and Intellectual Disability: Claim that 75-80% of Persons with Autistic Disorder are Intellectually Disabled is Based on Credible Authorities

UPDATE: Alan Griswold is in very deep denial. I have now provided 3 credible sources to support the 75-80% range of persons with Autistic Disorder as also being Intellectually disabled - the ICD, the CPA and the CDC and Mr. Griswold can only repeat  his opposition to an association between Autistic Disorder and Intellectual Disability.  Of course accepting this information would require Mr. Griswold to reject his contribution to the world's discussion of autism disorders, his book Autistic Symphony which rejects autism as a medical disorder:  

"Autistic Symphony offers a unique look at the fascinating subject of autism. Challenging the psychiatric and scientific perspectives that focus exclusively on disabilities and impairments, Autistic Symphony celebrates the challenges and rewards experienced by every autistic individual, and argues that far from being a medical monster, autism is one of our culture's greatest strengths."

 
As I mentioned in my previous post Alan Griswold of Autistic Aphorisms is one of those comfortable with speculation that Jesus Christ may have been autistic but is not comfortable with the fact that many persons with Autistic Disorder are Intellectually Disabled.  Mr. Griswold and Astrid at at  Astrid's Journal disagree with my numerical references and wrongly describe them as self constructed.

My claim is not that 75-80% of all persons with an Autism Spectrum Disorder are also Intellectually Disabled as Astrid in particular seems to think. My assertion is that credible authorities have stated that 75-80% of persons with Autistic Disorder are intellectually disabled.  I stand by that assertion and, once again, for those who actually read before reacting, offer the sources:

1. Canadian Psychological Association    Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006.

In that brief the CPA refers to 2 separate categories "Autism" and Asperger's":

"Cognitive impairment is present in about 80% of persons diagnosed with Autism and
general intellectual functioning is most often below average. Persons diagnosed with
Asperger’s Disorder have average to above average intellectual functioning.


...

In sum, persons with ASD present with a wide range of impairments in cognition, language and
behaviour which present in some common but reliably distinct ways between Autism and
Asperger’s disorders."

2. Center for Disease Control Counting Autism 

CDC’s most recent data show that between one in 80 and one in 240 children with an average of one in 110 have an ASD. This is a prevalence of about one percent of children. These results reflect data collected by CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network in multiple communities throughout the U.S. in 2006.

Estimates are based on health and education records from participating communities, which includes eight percent of the U.S. population of eight year olds. All children in the studies were eight years old because previous research has shown that most children with an ASD have been identified by this age for services.


...


Cognitive Functioning (from the pdf version)

2004
 
From 37.9% (Arizona) to 63% (Alabama) (overall average: 43.8 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test results on intellectual ability for at least 75% of the children identified).

2006
 
From 29.3% (Colorado) to 51.2% (South Carolina) (overall average: 41.0 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test reults on intellectual ability for at least 75% of the children identified)

The CDC figures of 41-44% for all persons on the Autism Spectrum having an intellectual disability are consistent with the 80% figure for those with Autism EXCLUDING Aspergers cited by the CPA. These figures and sources are my authorities for the upper end of the 75-80% range of persons with Autistic Disorder having an Intellectual Disability.  That is not a self constructed figure.

The lower end of the range I cite is the figure based on older sources like the 1992 ICD diagnostic criteria for Autism:

3.The ICD-10 Classification of Mental and Behavioural DisordersWorld Health Organization, Geneva, 1992


F84.0 Childhood Autism


A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls.


...


All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases.


F84.1 Atypical Autism


A pervasive developmental disorder that differs from autism in terms either of age of onset or of failure to fulfil all three sets of diagnostic criteria. Thus, abnormal and/or impaired development becomes manifest for the first time only after age 3 years; and/or there are insufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restrictive, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language. Atypical autism thus constitutes a meaningfully separate condition from autism.


Includes:
* atypical childhood psychosis
* mental retardation with autistic features

These three authorities are the primary sources for my assertion that 75% (3/4 in the ICD) to 80% (CPA, CDC) of persons with Autistic Disorder also have intellectual disability.  Those are not self constructed figures as claimed by Alan and Astrid.  They are figures provided by credible authorities.

Autism Disorders and Identity: Some High Functioning Autistics Angry Over Being Associated with Intellectually Disabled

One of the most unusual elements encountered by parents of low functioning, intellectually disabled autistic children is the angry, hostile reactions of some persons with High Functioning Autism and Aspergers to any mention of Intellectual Disability as a characteristic of autism disorders. A recent example amongst many that I have encountered is the May 1 comment by Alan Griswold on his blog Autistic Aphorisms and the comments by some other high functioning autistic persons in response. The commentary, including Mr.Griswold's, dismisses credible authorities like the Canadian Psychological Association and the CDC who have published statements indicating that 80% of persons with Autistic Disorder and 41-44% of all persons with Autism Spectrum Disorders are also intellectually disabled. In the place of these authorities the commentators substitute their own opinions and their obvious dislike of being associated in a diagnostic category with so many persons who are intellectually disabled.

Mr. Griswold is the author of a piece of autism enlightenment calld "Autistic Symphony".  In that work, apart from the title portraying autism as beautiful music, Mr. Griswold includes a chapter embracing an article which purports to show by a review of historical references that  Jesus Christ was autistic. The "Jesus was Autistic" nonsense is the most extreme example of efforts to comb history and define various remarkable individuals as autistic ... usually geniuses like Einstein, Van Gogh and Mozart.  For those who identify with the autism label any talented, positive figure must have been autistic ... but not those intellectually disabled autistics living with us today. 

The Canadian Psychological Association and CDC figures pointing to high numbers of intellectually disabled autisics can not be trusted but a flimsy, flaky article speculating that Jesus was autistic, well that is truly worthy of embrace by the author of Autistic Symphony.  Identification with a psychiatric diagnostic manual category may help some people understand challenges they have faced.  It can also, in some cases, inflame their bigotry towards those less advantaged ... towards those many  low functioning autistic persons with intellectual disabilities.

Autism may well be a symphony in some people's fantasies but in the real world it is  a number of serious disorders.  In the case of Autistic Disorder 75-80% of persons with the disorder are also intellectually disabled. All the cheap, derogatory insults and bigotry towards those with intellectual disabilities on display at Autistic Aphorisms will not change those facts.

Is Autism Rising? Autism Knowledge Will Be Lost in the DSM-5

Conor, May 1, 2010, Age 14, 

Autism Diagnosis at age 2

Autism rates then: 1 in 500

Autism rates as of May 1, 2010: 1in 110

Old  (past 2 years) Facing Autism in New Brunswick profile 

Autism Rates 1 in 150 

Autism Rates Today: 1 in 110

Autism Rates Post DSM-5:  Who Knows? 

Knowledge is power said   Sir Francis Bacon.  Unfortunately the American Psychiatric Association with its treatment of autism disorders in  the DSM-5 seems to disagree with Sir Francis Bacon.  The decision to merge existing Pervasive Developmental Disorders in the DSM IV , and to increase the numbers of persons by adding a category for  persons with  "sub-clinical" characteristics of Aspergers will deprive us of much knowledge about the nature of autism disorders and aggravate existing challenges in understanding what causes autism disorders.

One of the major debates about autism disorders revolves around the question of whether autism disorders are truly on the increase, and are caused by environmental factors or triggers,  or whether the startling increases (from 1 in 500 when my son was diagnosed in  1998 to the current 1 in 110 recognized by the CDC) in autism diagnoses is totally explained by the 1994 DSM-IV revisions and social factors such as increased social awareness of autism, diagnostic substitution, alleged greater access to services for autism diagnosed children etc.

Most of these excuses for denying that autism is really rising are speculative but the DSM-IV diagnostic changes are real and there is no dispute that those changes play a significant part in explaining some of the increases.  The debate rages though over whether it explains all or substantially all of the increase in autism diagnoses.  After the DSM-5 kicks in the debate, and our knowledge of autism disorders and whether they are really rising , will be muddied further by the expanded definition of autism spectrum disorders. Epidemiological studies will be weakened (unless they somehow can be argued to show vaccines don't cause autism) by the difficulty arising from comparing autism rates pre and post DSM-5.  Autism knowledge, important autism knowledge about the role of environmental factors  in causing autism disorders will be lost or obscured.

This comment was prompted by some revisions I am doing to this blog site. I added the picture, above, taken yesterday of my now 14 year old son Conor to my sidebar . When he was diagnosed 12 years ago I read of autism rates of 1 in 500.  As I read the profile section in the sidebar I noted my profile note of a couple of years ago referring to rates of 1 in 150.  I am now changing it to read 1 in 110.  After the DSM-5 is in full effect, and assuming I am still being a nuisance on planet Earth, my profile section might well state 1 in 50.  And arguments will rage over whether the figure reflects a real rise in autism diagnoses or changes brought about by the expansion and dilution of the autism categories in the DSM-5.

Autism knowledge and, according to Sir Francis Bacon, power over autism disorders,  will be lost.  The knowledge and power  to find treatments and cures for autism disorders; to help those with autism disorders who want to be helped, who need to be helped, will certainly be diminished and possibly  lost entirely.

Paladin Advocacy League Meeting Saturday May 29 Vancouver BC

Are these words true for you?

Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

- Section 15(1) of the Charter of Rights and Freedoms

Lack of effective public policy and political will has allowed Canadian institutions at all levels to deny Canadians with disabilities equal access to full citizenship as guaranteed in our Charter. Despite what our politicians tell us and the rest of the world, systemic discrimination is an everyday reality in Canada for most of us living with a disability. 

The way to right this wrong is through real advocacy, political will and law.

The Paladin Advocacy League ( PAL ) is a recently formed, not-for-profit society which advocates for public policy changes which will provide Canadians with disabilities equal access to the equality provisions of our Charter. Actions speak louder than words.

We intend to put our founding principles into action by advocating for:

1. Public policy changes which will put the equality provisions of the Charter of Rights and Freedoms and the Convention on the Rights of Persons with Disabilities into practical force and effect for all British Columbians with a disability.

2. Portable, consumer-driven, individualized funding for British Columbians with disabilities.

3. Government-funded legal counsel for test cases.

Canadians with disabilities are also Canadian citizens with the responsibility to vote and make clear to our politicians and public servants that it is nothing more than reasonable to expect equal rights in Canada in the 21st century.

We want to meet with you to talk, listen, discuss, plan, laugh and, of course, eat cookies! Coffee will also be served. Everyone is welcome, particularly Canadians with disabilities, their families and supporters. Please meet with the Board of PAL on:

Saturday May 29th, 2010 from 1:30 to 3:30pm

COLLINGWOOD NEIGHBOURHOOD HOUSE

Multi-purpose room, 1st floor

5288 JOYCE STREET

Vancouver, BC

RSVP

To: palsharks@yahoo.ca

Or call Paul Caune (604-928-1644)

Or Visit our Facebook Group Page: Pal the Paladin Advocacy League

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

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.  

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.

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!

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 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.

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.