Autism Parents Are Not Unbreakable

  

The allegedly UNBREAKABLE blade of my window ice scraper snapped off under the strain of several days of heavy ice scraping in this December's cold and snowy Canadian winter weather. In fairness to the manufacturers and distributors of the "Unbreakable" ice scraper blade I have used it well past the 3 year limited warranty and it has seen lots of use in previous Canuck winters. People, including parents of severely autistic children, can also break particularly if they face other socio-economic and/or family and health challenges.

Not all parents break in the face of the challenges and fears that haunt many parents of severely autistic children but some do.  All of us know that it is highly unlikely that anyone will provide our autistic children with the love and care, the security and the enjoyment of life, that we have provided our children.  Some of us, not all, but some of us, break under the pressures of those facts.  Some parents rather than leave their children to a world that they know will not care for them kill their own children and take, or attempt to take, their own lives.

The world of "autism" awareness is  cursed by a group of fellow parents that attacks these parents for any effort to treat their own children, who do nothing to help those parents and their children in any meaningful way. They most assuredly will not provide any meaningful assistance to the children whose parents they condemn for trying to end their existence to prevent their adult autistic children from suffering lives on streets, hospital wards, jails and mental health institutions. They do not realize that those parents are broken, just broken, by the realities they and their children face and the children will face after their parents are gone. Yes, they are broken by the realities their children will face after they are gone; NOT by people talking about those realities as some erroneously claim.

These alleged thinking persons who purport to offer guides to autism and who attack all parents who do not drink from their "autism is a gift kool-aid" do nothing because they too are broken, their common sense is broken, their ability to see autism realistically is broken, shattered under the weight of their irrational belief system.

We are all people. Ultimately our bodies outlast our limited time warranties. None of us can  dare  claim we are unbreakable.  The alleged thinking persons would do well to remember that reality as 2013 slips away and their own children age and move closer to their own very uncertain futures.    

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THIS Is Autism, Conor's Autism Reality, Self Injurious Behavior

Suzanne Wright's recent honest and courageous statements in support of a National Autism Plan in the United States has attracted the wrath of Neurodiversity cult members and they will not relent. All the usual suspects  have been voicing their irrational outrage Emily Willingham, Shannon des Roches Rosa, John Robison etc.  In their modern version of the "Cold Mothers Cause Autism" non evidence based, fantasy, attack on parents that caused so much pain they condemn parents and family members for telling the world the unspeakable truths about autism: autism is a disorder, or group of disorders, harmful disorders that can inflict pain and suffering on those who suffer from them.  Following is a a comment and set of pictures I posted in May 26, 2012.  They show my son's joy turning to pain in a flash on the swings of his old grade school.  My Canon camera was set on "sports" mode to show several action shots in sequence and captured this harsh autism reality ... the kind of autism reality that you will not see on "feel good about autism" group sites and blogs.

Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash

I have never accepted, and have in fact been openly contemptuous of, the view that autism is a joy, an alternative, even superior way of thinking.   My son's autistic disorder diagnosis accurately describes autism as it really is ...  a disorder, one that  impairs the lives of those, like my son Conor, who suffer from that disorder.  In my view those who promote autism as anything other than what is, who portray autism as a feel good alternative way of thinking delude themselves and ill informed members of the public. In societies where the public participates in a democratic process to determine what services and interventions will be made available to help those in need the light and fluffy portrayals of autism do a serious disservice to those with severe autistic disorders who require help in living and enjoying their  lives.

In the picture above, and most that follow these comments, my son is shown enjoying time on the swings at the neighborhood grade school he attended several years ago.  We arrived early and no one else was present on the grounds. There was no sensory overload.  It was overcast and mildly cool but very pleasant. We made no demands on Conor and let him enjoy his time on the swings which, for the most part, he did.  We were there only  a few minutes though when, quite suddenly and with no discernible external causal factors, no external stress factors, he began hitting himself on the head.  There was no apparent internal cause for his sudden shift to self injurious behavior either.  He had enjoyed breakfast and had visited our washroom facilities for personal reasons.  He showed no indication of discomfort whatsoever prior to switching suddenly from enjoying the swings to self injury. 

Conor's sudden shift from enjoying the swings to self injury suprised me only because it was so sudden and occurred while he was thoroughly enjoying himself.   After 16 years of 24/7 caring for my son I have no idea what caused this specific outburst of Self Injurious Behavior (SIB) any more than most similar incidents where there were no obvious external or internal causes.  What I do believe, and believe fully, is that such sudden SIB's are a result of his neurological disorder, his autistic disorder.  I don' t give a darn whether any autism experts accept my anecdotal evidence or not.  Conor's SIB is part of his autistic disorder.  The many well intentioned autism researchers who gathered in Toronto for the IMFAR convention might wish to consider spending more of their time, resources and intellects reseaching Self Injurious Behavior in persons with Autistic Disorder or Autism Spectrum Disorder as it will be officially known after May 2013.

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An Excellent Week For Autism Advocacy! Suzanne Wright Speaks Out and John Elder Robison Resigns

Thank You Suzanne Wright!

It was a good week for reality based autism advocacy for two reasons. First, I was very encouraged by Suzanne Wright's very honest description of the many challenges facing persons with autism disorders and their families in Autism Speaks to Washington - A Call for Action. Second I was very pleased to see John Elder Robison, an extremely high functioning and very successful, free ranging Aspie, who refuses to acknowledge that autism is a disorder that should be cured, resign all his positions with Autism Speaks.  It appears that Autism Speaks may be abandoning its attempts to mollify the Neurodiversity ideologues that have caused so much harm to those with severe autism disorders. Hopefully its fund raising expertise can now be used to encourage the research necessary to help all persons with autism disorders and to develop national autism strategies to implement evidence based autism interventions in the US ... and in Canada.

I encourage everyone who actually cares about helping persons with autism disorders to read Suzanne Wrights powerful article in full.  I am very impressed with her courage in speaking so openly and honestly about the realities faced by many with autism disorders, their families and caregivers:

"Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse. 

These families are not living. 

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7. 

This is autism. 

 Life is lived moment-to-moment. 

In anticipation of the child’s next move. In despair. In fear of the future. 

This is autism. 

On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally. 

Maybe they have been up all night caring for their teenage child who’s having a seizure. 

Maybe they are up yet again changing the sheets because there’s been another bed wetting accident. 

Maybe their child has been trying to bite them or themselves. 

Maybe they can’t afford the trip to a doctor specializing in autism. 

Maybe there is a waiting-list for ABA, speech and OT. 

Maybe their insurance won’t pay. 

Maybe they don’t have the money to pay a special lawyer to fight for school services. 

This is autism.

If any of this sounds familiar, you know autism. And if you know autism, you know we are looking at a monumental health crisis. And, we have no national plan."

I have a 17 year old son who suffers from severe autism disorder who has hit himself in the head repeatedly, bitten his hands repeatedly day in and day out until he was removed from the mainstream classroom and received his ABA based instruction (for which I and other parents had to fight) in a separate learning environment.  He has put his hand through glass windows.  He suffers from seizures and almost died in an adverse reaction to his previous seizure medication (as determined by the ICU team that saved his life at our local hospital).  He has suffered serious meltdowns as a result of obsessive behaviors. Disruptions of routines can also be extremely difficult.  He once left our home unnoticed and wandered across a very busy street oblivious to car traffic dangers until a good citizen of Fredericton stopped and took him to a nearby Ultramar service station/convenience store, called 911 and waited until I arrived to bring my son home.  The consequences could have been much different and I have never lost sight of what might have been.  24/7 care is absolutely the rule in our house. 

I am all too familiar with Suzanne Wright's list. I know autism.  I believe fervently that researchers should be focusing on finding cures and treatments for all autism disorders not the meaningless "remediation" advocated by the very high functioning J E Robison who opposes the very concept of curing autism.  I am very happy to see that Mr. Robison has abandoned his attempt to persuade Autism Speaks to stop seeking  real understanding of autism, to stop seeking treatments and cures for autism.  Above all Mr Robison's departure may help Autism Speaks find its way to once again speaking honestly about the challenges facing all persons with autism disorders including the 50% on the autism spectrum identified by the World Health Organization as also suffering from an intellectual disability.

Thank You Suzanne Wright!

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Great Autism News: 15 Year Old Boy With Autism And Intellectual Disability Found Safe

As the father of a 17 year old young man with severe autism, intellectual disability and epileptic seizures I am very happy to read that 15 year old autistic boy Louis Martin was found safe in Montreal after being reported missing by his father (who also tweeted his son's disappearance).  

Wandering is a very serious problem for persons with autism, particularly when they also suffer from "comorbid" intellectual disability. It is long past time that everyone including mainstream media, Hollywood, television and autism "experts" stopped glorifying those with exceptional talents and started presenting full,  honest pictures of autism disorders.

As reported by The Montreal Gazette:

"Montreal police have located a 15-year-old boy with autism who went missing from his Outremont home early Saturday morning. Louis Martin was spotted near the Lionel-Groulx métro station after police had asked the public for help in finding the boy, who has the mental age of a 4-year-old.

Pierre Martin, the boy’s father, sent out a message on Twitter saying his son is safe.Martin, a political-science professor at the Université de Montréal, had tweeted his son’s disappearance on Saturday.

Police officers spent much of Saturday searching metro stations, parks, streets and alleys trying to locate the boy."

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High Functioning Autism Speaks Continues Betrayal of 50% of Autism Spectrum With Intellectual Disability

Autism Speaks continues its betrayal of the 50% of persons on the autism spectrum, those with intellectual disability, those for whom  autism is a disorder not a superior way of thinking or the possible subject of a new TV comedy series or a career as a well paid "autism" advocate with "Autism" Speaks. 

In the October 11 2013 blog "An Emphasis on Strength: Finding Fulfilling Employment" Sarah Andrews, Autism Speaks Coordinator of Adult Services, and mother of two sons with autism, talks about the interests of her two sons "on the spectrum".  Ms. Andrews offers the current feel good drivel that is circulated widely now and which simply pushes aside, as the DSM5 does, those with severe autism disorders, specifically those with serious intellectual disabilities ... global developmental delay:

"Focus on your child's strengths and interests and hopefully he 

or she will find a career that is fulfilling and rewarding." 

This may come as a shock to Ms Andrews and the rest of the Very High Functioning Autism Speaks organization but most children receive an autism disorder diagnosis because of their deficits, not because of their strengths or interests.   Many families are literally trying to live each day with their severely autistic, intellectually disabled child, usually a son, to the best of the PARENTS ability. Some lose the battle when an autistic child goes missing and is found in the worst of circumstances.  Some deal with noise levels, and chaotic conditions, that can result in threats of eviction from apartments and condominiums as is now occurring in Ottawa. Some see self injurious behavior in their child on a regular basis. Some struggle to communicate with their child.  

The corporate officers at High Functioning Autism Speaks are reportedly well paid.  They should offer more than feel good platitudes and meaningless tripe as advice to parents dealing with their child’s harsh realities.  The corporate officers at High Functioning Autism Speaks should at least PRETEND they care about the 50% of the autism spectrum with intellectual disabilities. At the very least they should not engage in the misrepresentation of autism challenges to the world at large. 

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Severe Autism: Autism in the Shadows - Thank You Amy Mackin

"My son’s story is one of hope, not unlike the stories regularly broadcast on television, printed in magazines or making the rounds on YouTube. Yet the autism spectrum is wide and diverse, and many who suffer from severe autism will never reach the level of functioning that my child has achieved. Although these people are also part of the story, we rarely hear their stories."

Amy Mackin, Autism in the Shadows, Washington Post, July 19, 2013

Amy Mackin is a writer and a blogger who writes at www.amymackin.com.  She is also the mother of an autistic child who she describes as high functioning in the Autism in the Shadows opinion piece she wrote for the Washington Post. Although here son is high functioning Ms. Mackin's article is an eloquent, direct and powerful statement about the invisible autistics, those who live at the severe end of the autism spectrum.  As the father of a 17 year old son who lives at the severe end of the autism spectrum I thank Amy MacKin for her concern for those with severe autism, those who are ignored and neglected (with some exceptions) by both the mainstream media AND by  autism research professionals.  Amy Mackin has spoken the truth about severe autism honestly and directly:

"We must see the pain of a parent who watches her child smash his head against a concrete wall, who throws himself on the floor of a store because he simply cannot stand the fluorescent lights another second; the person who starts violently screaming because the crowd getting off the subway terrifies him. We must feel the anguish of compassionate caregivers when everyone around is staring at their loved one with horror and judgment. We must comprehend the grief of parents who are forced to acknowledge that their children may never be able to care for themselves, and we should consider all the future decisions and worry that realization encompasses.

Many personal stories about autism make us smile and renew our faith in humanity. But some stories will make us cry. They should, because autism can also be terrifying and hopeless. This side of the spectrum still lurks mostly in the shadows. But to fully understand why we search so exhaustively for answers and doggedly seek a cure, these stories must be seen and heard, too."

Thank you Amy Mackin. 

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Why I Chose Autism REALITY As My Social Media Name

The picture above, for those visiting my blog for the first time, is my son Conor now 17+ years old.  I love him dearly and he brings great joy into my life every day.  He is also severely autistic with severe cognitive challenges (intellectual disability) and like many with those characteristics he also suffers from epileptic seizures.  As great a joy as he is he also engages in acts of self aggression and suffers from sensory challenges, meltdowns and obsessively repetitive behaviors that are very disruptive in themselves.  

For Conor his autism is not a joy, a blessing, a superior ability or a different way of thinking.  It is a serious disability, a disorder,  and his intellectual disability and epileptic seizures are not "co-incidences" or "co-morbidities". They are part  of his reality, a unified part of his reality, together they limit his life expectancy. Those are all facts that I have been determined to face throughout his life so that I do not do him a disservice.

I will never run from Conor's reality because to do so, as it would for an obvious, physical disability, could be harmful to him.  I have chosen long ago not to embrace the non evidence based belief that if I only pretend that autism is a blessing that somehow that belief will magically transform reality. 

I have helped Conor by being part of his life and enjoying his company every single day and will do so as long as I live. I have tried to help my son, and others in my province and country who suffer as he does, through determined advocacy, by  facing reality head on. And I will continue to do so as long as I live.  Others can choose political correctness and feel good cliches. I will continue to deal with autism ... reality ... and love my son as I do.

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Mother Of An Autistic Son Asks Autism Speaks for Some Actual Autism Awareness

The following commentary  is from the blog Muslimah Next Door  written by Dishad Ali. It addresses an issue that I have raised several times - the lack of real autism awareness created by autism awareness events. The author's comments at Muslimah Next Door under the title When an Autism Awareness Event is Anything But are followed by a letter from  Harshita Mahajan the mother of a teenage autistic son addressed to Autism Speaks.  I sincerely hope that Autism Speaks takes the mother's concerns, and the contents of her letter, seriously and begins to provide during autism awareness events awareness of the realities of autism disorders including some of the challenges presented by autism mild and severe. 

"We’ve hit the middle of April, and while there was a flurry of focus on autism at the start of the month, it still is very much “Autism Awareness Month.” Awareness events sponsored by local and national organizations continue to occur across the United States, but sometimes I wonder how much real “awareness” is actually happening? How many of these events just serve as fundraisers for the organizations sponsoring it?

Fundraising is not bad, and of course autism organizations must capitalize on the attention garnered in this month. But, if you’re going to frame event as “autism awareness,” then there be some education happening to make people “aware” of what autism is, what it entails, how it can be manifested. (Unless it is a closed event just for the autism community) There better be autism ambassadors at these events making sure things go as smooth as possible for those with autism (and without) who attend said events.

My friend Harshita Mahajan took her autistic teenage son Sahil to an autism awareness event recently sponsored by Autism Speaks, at which her son had a lapse of self-control. What happened after that was upsetting and resulted with Harshita leaving with her son. For this to happen at an autism awareness event – well the irony is not lost on me. Read her story. Share it. Let’s make sure events advertised as being about ”autism awareness” educate people, not just fundraise."

I encourage anyone interested in autism disorders to read the letter by Harshita Mahajan as posted on the Muslimah Next Door blog under the commentary When an Autism Awareness Event is Anything But.

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Autism and Seizures: Conor's Second Grand Mal Seizure (That We Know Of)

The pictures above were initially posted on this site on May 26, 2012, several months before Conor's 1st known Grand Mal Seizure in November. As I posted then, external conditions were perfect and Conor was enjoying a favorite activity in a favorite location when he suddenly began hitting himself in the head. I don't  know what caused it, Conor lacks the communication skills to explain, but it was definitely internal. Together with many similar circumstances including sudden closing of his eyes and looking blankly into the distance I reported them to his pediatrician as possible seizure activities. The pediatrician did not disagree but did not want to provide medication in the absence of any falling behaviors. Two Grand Mal seizures later and a visit to a neurologist and Conor is just now starting on medication which will hopefuly reduce seizure activity.  

My autistic son's second Grand Mal seizure, of which I am aware, happened when I was in an adjacent room less than 15 feet away this past Sunday. I heard the noises when his seizure began and recognized them this time for what they were. I jumped up immediately, laid him on his side and cushioned his head while his Mom called the excellent 911 emergency responders who took Conor to the local hospital, the DECH, for the excellent care and attention they have have always provided members of our family. (Including me during my recent hospitalization for a major asthma attack). 

 I was scared this past November when Conor suffered his first Grand Mal seizure. I was just as scared this second time. I can't believe that this can happen repeatedly without serious life threatening consequences especially if no one hears him during the night, or if it happens during swimming which he dearly loves. Conor was seen by a neurologist just 4 days earlier and we had, after some base line blood tests were done, started on the low dose end of a progressively heavier medication schedule. Hopefully as the dosage is increased and has time to take effect the seizures will cease. 

Autism, as portrayed by most autism "awareness" groups, is far removed from the reality of severe autism with intellectual disability and sezures/epilepsy. I know it and the APA wizards who contrived the DSM5 ASD know it. Life will be easier for them and the researchers who conduct autism research while excluding those with intellectual disability, a trend which they have followed for many years and which is now condoned by the DSM5. The difficult conditions that are usually found with the severely autistic and make life difficult for autism researchers and clinicians ... intellectual disability, self injurious behaviors and seizures will be reduced substantially by being relegated to the invisible category of intellectual disability in the DSM5. 

I look at the multitude of "autism" studies on Google Scholar and have no idea what most of them involve in terms of autism as a disorder or the serious conditions which are related to the severe forms of autism. I do know that very few of them address the severe realities faced by my son. I do know that when the APA spends several years "recompartmentalizing" the diagnostic criteria for autism and epilepsy to come up with the DSM5 ASD they are doing no one with severe autism any favors. Their efforts and funds would serve a far better purpose if they followed the lead of the emergency responders and hospital staff at the DECH who have treated Conor and cared for him so well. Focus on helping people with autism, particularly those most in need, and save the idle academic curiosity "autism" studies for your retirement.

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CNN's Very High Functioning Autism Awareness Efforts Misrepresent Autism Disorders

CNN's Portrayal of Autism In the Days Surrounding WAAD 2013

Middle - Jack and John Elder Robison - High Functioning Aspergers

Bottom -Trevor Pacelli High Functioning PDD-NOS (Holli Dunn Photography)

To no big surprise successful, very high functioning Asperger's businsessman, author and family man John Elder Robison's new book Bringing Up Cubby has benefited from two high profile interview promotions on CNN. A promotional appearance with his son on Dr. Sanjay Gupta's Sunday show was followed with a gushing interview on the CNN morning show Early Start. CNN, and its in house neurosurgeon Dr. Sanjay Gupta, have long delighted in interviewing very intelligent persons with autism.

Neither of these interviews enlightened the world about the realities faced by those less fortunate than the Aspergers family Robison, those with severe autistic disorder. There was discussion of not having a lot of friends but no discussion of intellectual disabilities, serious self injurious behaviors, children wandering, sometimes with dangerous consequences, far from family or schools, the challenges of severely autistic children in schools or in finding a place to live when their parents grow old and ultimately become deceased.

CNN's autism awareness effort wasn't restricted to promoting very high functioning businessman John Elder Robison's literary career. It also assisted in kick starting the career of yet another very high functioning person with autism. The CNN obsession with high functioning autism continued  with a special to CNN article by Trevor Pacelli self described as a high functioning individual with PDD-NOS. Below his Holli Dunn Photography picture it states that: "Trevor Pacelli, 20, maintains a 3.6 GPA at community college and has been accepted to five universities."

Several years ago CNN afforded several episodes to the Amanda Baggs story, portraying her as low functioning. Subsequent to the CNN-Baggs collaborations several former acquaintances of Baggs, who attended the same private school for gifted youths, as she had attended came forward on the internet to describe her as a highly verbal, creative individual with normal functioning abilities.

I am not suggesting that CNN or Dr. Sanjay Gupta intentionally misrepresent autism to enhance ratings and profits. I recognize that Dr. Gupta has a busy schedule and it would not be easy for him and his crew to visit a facility caring for children, youth or adults with severe autism disorders.   I am simply stating that, for whatever reasons, Dr. Sanjay Gupta and CNN present misrepresent autism to the world by repeatedly featuring high functioning persons with autism.

Obviously Dr. Gupta and CNN are not alone in portraying high functioning autism as representing the entire autism spectrum.  Autism Speaks engages in the same exercise with  very high functioning  John Elder Robison and high functioning Alex Plank and tends to downplay intellectual disability and other inconvenient severe realities facing many with autistic disorder.

Autism fund raising power houses and major mainstream media alike misrepresent autism to the world painting a picture of autism as gifted, shy individuals while ignoring the harsher realities facing those on the severe end of the autism spectrum.

This misrepresentation provides cover for governments in funding autism research and  in providing services for those with severe autism disorders: why waste dollars researching or providing services for a disorder that appears not to be a disorder after all? 

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Autism Speaks Reluctantly Confesses: 40% Of Persons On Autism Spectrum Have Intellectual Disability

Intellectual Disability remains the Elephant in the Autism 

Living Room;no one wants to admit it's there or to talk about it

It is politically incorrect in today's autism world to acknowledge the existence of the invisible autistics, the one's unlike Ari Ne'eman, John Elder Robison, Alex Plank and  Michelle Dawson all of who whom have enjoyed great success and demonstrate considerable intelligence and most of whom have never met a television camera or gathering of journalists that offends them. Some of the extremely high functioning superstars of autism "self" advocacy have literally built careers telling the world what it means to be "autistic".   Meanwhile those with intellectual disability who constituted autism's "vast majority" prior to the DSM-IV expansion of the pervasive developmental disorder category to include Aspergers remain invisible and unmentionable in polite, successful autism circles:

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. 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."

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp 

Against that background I must give some slight praise to Autism Speaks for daring to mention, albeit hidden deep in  the FAQ section, carefully book ended by reference to autistic savant skills and those with normal to above average intelligence, that, Oh My Gosh,  40% of persons on the autism spectrum have an intellectual disability:

What Does it Mean to Be “On the Spectrum”? 

 Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have intellectual disability (IQ less than 70), and many have normal to above average intelligence. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently.

Autism Speaks, like the APA committee that drafted the DSM5 autism criteria to exclude the most severely intellectually disabled from an autism diagonosis even if they meet all the specific criteria for an autism spectrum disorder, does not wish to openly speak the truth: intellectual disability is not just a co-morbid or coincidental disorder that just happens to be present in the vast majority  of cases of classic autistic disorder. It is for the original vast majority a description of their  developmental deficits, while those with Aspergers do not have intellectual or language deficits most of those with Autistic Disorder do.  The intellectual disability is a feature of their autism disorder whether extremely high functioning Aspergers self advocates, fund raising entities like Autism Speaks or even the APA wish to acknowledge it.  

There is no reason to artificially separate the intellectual disability from the "autism" symptoms.  There is no scientific basis for doing so and it is morally and ethically wrong to do so.   

It is scientifically unsound to hide the reality that intellectual disability is an integral part of autistic disorder.  It is just as immoral and unethical to hide that reality, to pretend that intellectually disabled are not truly autistic as it would be to pretend that persons of different racial, gender characteristics or sexual orientations do not count as full human beings. 

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World Autism Awareness Day 2014

If past is prologue very little awareness of the harsher realities of autism symptoms will be generated on this WAAD, April 2, 2013.  Next year, in 2014,  and for years thereafter, the streamlined DSM5 autism will also eliminate many on the very high functioning and low functioning ends of the autism spectrum. 

It is unfortunate that in the DSM5 Autism Spectrum Disorder definition the American Psychiatric Association is revising the medical definition of autism spectrum disorder in ways that are expected to change its diagnostic characteristics. There is no good reason to wreck havoc on autism research and diagnosis by redefining yet again what we are talking about when we say "autism".  

The autism disorder picture, already muddied and muddled by "self" advocates and others who promote autism as a blessing,  will have even less real meaning as the APA, without any scientific or ethical reason, eliminates the most severe cases of autism from future diagnosis. Autism research, already challenged by previous DSM definition changes and alleged increased awareness, will become increasingly challenged.  

The actions of the APA in redefining autism in the DSM5 reflect the intellectual biases of the APA drafters, are in breach of the "first do no harm" principle and  are unethical. Be aware of that on this World Autism Awareness Day 2013 and prepare for a new autism on WAAD 2014, one that will look much different than the autism about which the world is expected to become more aware today.

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Canada's World Autism Awareness Day Act: Great Preamble, Zero Action

On November 1, 2012 Canada passed An Act respecting World Autism Awareness Day an Act with a great preamble which provides for absolutely no action to ensure that effective evidence based early intervention for autism would be provided to all Canadian families affected by autism spectrum disorders.  

Talk, and rhetoric, is cheap.  Intervention is not. Failure to provide intervention and services is not cheap.   The human and financial costs of failing to take effective autism action continue to rise across Canada. 

60-61 ELIZABETH II

——————

CHAPTER 21

An Act respecting World Autism Awareness Day

[Assented to 1st November, 2012]

Whereas autism spectrum disorders affect a significant number of families in Canada;

Whereas Canada has a health care system and social safety net to prevent illness and serve citizens;

Whereas Canadian families affected by autism spectrum disorders have unequal access to services across the country;

Whereas worldwide the number of diagnoses of autism spectrum disorders is growing;

Whereas a greater awareness of the importance of early diagnosis and treatment for people with autism is required to engage more Canadians in helping their fellow citizens;

Whereas early intervention in the treatment of autism spectrum disorders can have promising results and help people engage with and contribute to society;

Whereas there is no known cause or cure for autism spectrum disorders;

Whereas 192 United Nations representatives agreed that World Autism Awareness Day would draw the attention of people across the globe to this neurological disorder that is affecting an increasing number of families;

Whereas in 2007 the United Nations General Assembly designated April 2, from 2008 on, as World Autism Awareness Day;

Whereas Canada is a signatory to the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities, which maintain that children with disabilities should enjoy a full and decent life in conditions that ensure dignity, promote self-reliance and facilitate their active participation in the community, while also enjoying all human rights and fundamental freedoms on an equal basis with other children;

And whereas Canada is a member of the United Nations and supports the work of this vital international organization;

Now, therefore, Her Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows:

SHORT TITLE

Short title

1. This Act may be cited as the World Autism Awareness Day Act.

WORLD AUTISM AWARENESS DAY

World Autism Awareness Day

2. Throughout Canada, in each and every year, the second day of April shall be known as “World Autism Awareness Day”.

Published under authority of the Senate of Canada

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Horrific Abuse of California Man With Severe Autism

 CBSLA photo as Shown on the NY Daily News 

Shows Horrifying Abuse of Man with Severe Autism

KCBS-TV  Los Angeles "Mom Sickened" and the New York Daily News "Tantamount to Torture" report a story of horrific, torturous abuse by professional caregivers of a 31 year old autistic man with the reported mental age of a 3 year old.  The incredible abuse was discovered after the man's mother noted bruising on his body and installed cameras which recorded the abuse.  The CBS video report follows but as CBS cautions this is disturbing especially if you are the parent, as I am, of a son or daughter with severe autism:

While the depravity of this abuse may be unprecedented similar abuse has been reported in the past. Security cameras unknown to the abusers have been the most reliable way of bringing such abuse into the light of day. In 2007 in a New York group home a severely autistic woman was beaten by attendants, abuse which was only discovered by cameras.  These are incidents where cameras caught the abuse of persons with severe autism and intellectual challenges, persons who could not speak up for themselves. The odds are good that where those cameras are not present similar abuses will occur and will go unreported. 

Cameras are the only protection many severely challenged persons with autism will have and should be mandatory in all facilities and homes where care is provided for those who can not speak for themselves. Severe autism realities must not be ignored, can not be ignored. If we ignore these realities, if we fail to protect our loved ones who can not protect or speak up for themselves we are abandoning them to cruel fates. Steps must be taken to ensure they live in decent, safe conditions.

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World Autism Awareness Day 2013 Should Include Some Autism Reality

April 2, 2013 will feature another World Autism Awareness Day around the world.  Many blue lights will shine, politicians will pose and take credit for helping advance the cause of autistic persons and their families, countless media reports will talk about the gifts of autism and television series and movies alike will feature gifted individuals and autism, once again, will be portrayed for public consumption as the domain of brilliant if socially quirky personalities.  Little if anything will be said about the vast majority of those with autistic disorder who are limited by intellectual disability, or about  those who suffer from  obsessive behaviors, serious sensory issues, epilepsy and seizure activity, self injurious behavior, or spontaneous aggression in the form of property and furniture damage or even reactive, spontaneous aggression towards parents and caregivers. Of course nothing whatsoever will be said about the ultimate realities facing autistic children and their families.  We all age, our children become adults and the parents who care for their children grow old, feeble and .... deceased. When these events occur our severely affected autistic children will live out their time in various types of institutional arrangements including psychiatric hospitals ... if they are among the fortunate with any place to live.   

Feel free to keep shining your blue lights and repeating the words autism awareness until you are ... blue in the face. But please try to actually raise autism awareness by talking about the serious challenges facing those with autism symptoms and disorders from which they will suffer for the rest of their lives. 

Shine your blue lights but start being realistic. If you really care about some one with autism and want to help the and make positive changes start by telling the world the truth about autism.  Create some reality based autism awareness.

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No Meaningful Inclusion, No Community Living for NB Youth and Adults With Severe Autism Challenges

                                              Resigchouche Regional Hospital Centre

As an Autism Society New Brunswick representative I attended a meeting held at the Restigouche Regional Hospital Centre a few years ago to participate in a meeting to review the operations of the RRHC and to vote on its future, specifically whether to continue to operate or to close. I voted to continue to operate the RRHC. There were autistic adults who had been living there for many years.  No alternative in New Brunswick then existed for these adults with severe autism challenges.  The vote was conducted and reluctantly agreed to by me, and all other stakeholders present, because no alternative accommodations existed in NB for the residents of the facility.  Today  no alternative has been developed despite representations made to government over and over and over again.

Millions forWoodstock Civic Center But No Time to Answer a Simple Adult Autism Care Question, Facing Autism in NB January 25, 2012

As the title to the above comment I made on this blog on January 25, 2012 indicates money is not necessarily an obstacle to construction of a modern, humane adult autism care network.  Money despite challenging economic times has been available for projects such as the Civic Centre for residents of Premier Alward's riding. Money has also been spent on sending autistic youth and adults out of New Brunswick to receive the care we could provide in New Brunswick if outdated, non evidence based models of community and inclusion did not dominate the thinking of our government leaders, educators and service providers. As former Conservative cabinet minister Tony Huntjens indicates in his comment on the above post between $300,000-$600,000 annually has been spent on just 1 or 2 persons living at Spurwink, money that could be used to build a network of adult autism facilities here in NB:

I totally agree with you Harold. When I was minister of FCS we had to use facilities in the State of Maine at an annual cost of $300,000 per person. I had planned on pursuing the initiative you speak of using the State of Maine model...this would keep the autistic person closer to home in familiar surroundings, it would create employment so that the $600,000 now spent in Maine could be used to pay for these services at home. As you know, my efforts were derailed and I had to resign as minister. These financial facts I speak of need to be brought to the attention of the present government...perhaps they will see the light.

Keep up the fight and I personally wish you the very best of luck.

Tony Huntjens, January 2012

Tony Huntjens was a cabinet minister during the Lord government years and showed himself to be  a true friend of New Brunswick's autism community as he remains to this day.  Although not a member of the legislature, or the current  government he has continued to be a supporter of children and adults with autism. I attended a meeting with a minister of the current administration on adult care over a year ago in which Mr. Huntjen advocated forcefully  for autistic adults in New Brunswick. His efforts, and those of everyone who attended the meeting were not met with any results by this current government which believes that all needs of autistic children and adults can be addressed by feel good cliches about community and inclusion.  His comments 13 months ago on this site are an accurate reflection of what took place almost a decade ago.  The adult autism care he described then remains largely unchanged today.  

Things were so bad then that an autistic boy was housed on the grounds of a youth correctional centre, a jail, before being sent out of the country to the Spurwink facility in Maine where the $600,000.00 annually that Mr. Huntjens spoke of was being spent.   Matters have not improved under the current Alward-NBACL government.    Things were bad then and ... they are not one bit better today.  

Social policies including  early intervention, education and adult residential care policies are now set largely by the New Brunswick Association for Community Living  which has extremely close ties to the current government.  Despite the wonderful sounding name NBACL turns its head the other way when autistic children are excluded from New Brunswick schools and autistic adults are sent to live on general and psychiatric hospital wards ... if they have anywhere to live at all. 

The Autism Society New Brunswick made representations annually to the Lord, Graham, and  the Alward government,  to develop a modern, humane autism residential care network as described by autism expert Paul McDonnell a Psychology Professor Emeritus and practicing clinical psychologist who was instrumental in the autism progress New Brunswick made in the pre-Alward era.  

Unfortunately the Alward government has not seen the light as Mr. Huntjens had hoped.  New Brunswick adults with autism and their families have no reasonable basis on which to believe that their needs will be met, or that their voices will even be heard (1a,b),  during the reign of the current administration.

For New Brunswick youth and adults with severe autism challenges inclusion and community living are simply cliches uttered incessantly by those who pretend to care about their well being. 

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(1) (a) 

January 4 2012

Dear Honourable Premier, Honourable Ministers 

and Respected Recipients

Re: Adult Autism Care And Treatment - NB Continues To Fail Autistic Adults In Need  

I am the father of a 16 year old son with severe Autistic Disorder and "profound developmental" delays. He is now 6'1" with the strong, solid physique his father once had in younger days.  At some point in the future I will be too frail to provide the care he requires and ultimately will of course no longer be available at all to help him. I began my involvement in autism advocacy in New Brunswick approximately 13 years ago.  Along with other determined parents I fought hard, very hard, for early evidence based intervention for autistic preschoolers and for the means to deliver those interventions. I advocated strenuously for autism specific trained education assistants, teachers and resource teachers. Some success has been enjoyed because of the efforts of parents of autism in the area of preschool and school services. New Brunswick has even been cited as a model from which American authorities could learn by the Association for Science in Autism Treatment. The same can not be said, at all, when it comes to adult residential care and treatment 

I also advocated for  adjustments to the total inclusion education model in our schools.  My son's self inflicted bite marks on his hands and wrists declined and disappeared entirely once removed from the mainstream classroom where he was overstimulated, overwhelmed, frustrated and learning nothing because of his serious autism deficits. I have been a determined opponent of the excessive dominance in our schools and facilities of rigid, ideologically based inclusion and community models. This mindset discriminates against severely autistic persons by failing to accommodate their real needs.  Our children have, at times, been sacrifices to the vanity of a community movement which can not adjust to differing needs, experiences and expertise. I participated in regular disability committee meetings held by the Department of Education until they were disbanded, the MacKay review and the Ministerial Committe on Inclusive Education. Believe me or not but many teachers and teacher representatives have told me in confidence that they shared my aversion to the rigid inclusion model which has caused considerable suffering to some children and has disrupted the education of others unnecessarily. My son has been accommodated because of my advocacy and because educators who dealt directly with my son were conscientious, could see what he needed and acted in good faith to help him. I know that not all severely autistic children have been as fortunate.

Nowhere has the insistence on an inflexible and non evidence based inclusion model hurt autistic children and adults more though than in the area of  residential care and treatment as they move from childhood to adolescence and ultimately adulthood. What awaits is a model which includes a belief in "community" backed up by group homes with untrained, underpaid staffers at one end of a spectrum of care.  At the other end of that spectrum is the regional psychiatric care hospital in Campbellton. In between the two ends is a huge gap. What is need is at least one centrally located permanent residential care and treatment facility for severely autistic adults.  Such a facility could be modernized and based on existing models in the world. It could include the professional assistance needed to provide care for severely autistic adults in a setting designed to provide them with a decent life, with continuing education and recreation opportunities.  The facility should be based in Fredericton, not because I live here but because Fredericton is where our evidence based autism interventions and facilities began and grew.  It is centrally located and it has a naturalistic environment with many woodlands, trails, parks and outdoor areas together with indoor recreational and entertainment facilities. 

I realize the current economic realities in NB, in Canada and the world work against any consideration of the type of facility that is needed. But economic realities always weigh in and have done so over the last decade that I have been involved with trying to advocate for a reality based, evidence based residential facility for autistic adults in need of a permanent home when their parents age and pass on.  Ever present too, and just as big an obstacle, is the belief that citing "community" cliches will actually help those who are most in need of help. 

I have visited Centracare years ago with the father of a adult autistic son who resided there at the time. He told me of seeing his son dressed in a hospital "johnny shirt" in a room with a cement room and a liquid substance on the floor. I did not know whether to believe  him or not until we arrived and again found him in the same room in the same condition. At least one autistic youth and one adult have been sent to a facility in Maine at considerable financial expense and considerable emotional stress for families living on the other side of an international border.  I have had parents email me to tell me of their young adult autistic children hitting their head and having to wear self protective head gear at home while parents struggled to provide care. I was told of an autistic adult living on a general hospital ward for a time in Saint John. I am aware, as are we all, of the autistic youth who lived for a time on the grounds of the Miramichi youth correctional facility before being sent to the a Spurwink facility in Maine. 

In early intervention and in school services both Liberal and Conservative governments have been of some assistance, have helped to provide needed, evidence based services to some extent. I ask that the same spirit be applied to developing a modern, decent residential and treatment facility for severely challenged autistic adults in New Brunswick. Nothing has been done for years.  We have failed New Brunswick's severely challenged autistic adults. Community rhetoric has not helped.  Autistic adults need a place to live.  My son will need a place to live with access to professional autism care and autism trained staff, a place with educational and recreational dimensions to provide a decent life for him and others like him.

Please advise whether your government is considering helping autistic adults and is working on a modern, reality based model.  If that is not in the works, please say so straight up.

Respectfully,

Harold L Doherty, 

Conor's Dad

Fredericton (Nashwaaksis)

(1)(b)

Dubé, Hon. Madeleine (DH/MS)	1/5/12
to me

On behalf of Minister Dubé, I acknowledge receipt of your email.  Please be assured that it will be brought to her attention. 

Thank you for taking the time to write to the Minister. 

Yours, 

Lynda Godbout

Executive Secretary/Secrétaire exécutive

Minister's Cabinet/Cabinet de la ministre

Minister of Health/Ministre de santé

Tel: (506) 457-4800

Fax: (506)453-5442

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