Monday, September 30, 2013

Dear TPGA Autism Experts: Thanks For Advising Us to Love Our Autistic Son! If Only We Had Known Sooner!

During recent weeks the TPGA "autism experts", have done a great favor to children, like my son, who suffer from severe autism disorders.  The TPGA autism wizards told parents like me who speak candidly about the deficits that limit and impair his ability to function independently in this world that we are making "monsters" of ours and all autistic children. 

Our children's autism disorders, in the view of the humble yet brilliant autism experts are not really disorders, despite the title, despite the medical diagnoses that identified them as autistic. For our children's benefit we should learn to accept them as they are; autism and all.  

The wise and brilliant thinking persons of the TPGA have advised us to ....... love our children. ....... wish we had thought of that ourselves.  Maybe our Conor would have turned in to a warm, smiling and happy young man ..... like the Conor in these pictures.  

Saturday, September 28, 2013

Autism Action Network: It Started: DSM5 Used To Revoke Autism Diagnosis

The Autism Action Network reports, in It started: DSM5 used to revoke autism diagnosis,  that the revoking of autism diagnoses under the DSM5 regime and the resulting denial of services and educational placements for people with autism disorders has begun.   Here in Canada the Childrens' Hospital of Eastern Ontario, CHEO, has excluded from its autism early intervention program a child it described as having global developmental delay, the express exclusionary phrase used in the DSM5 Autism Spectrum Disorder diagnostic definition.  Swedo, Lord and company were warned this would happen and stubbornly insisted that their vision of autism be imposed on the lives of children who would have otherwise received DSM-IV autism diagnoses.  Presumably they are happy to see the results of their efforts.

It started: DSM5 used to revoke autism diagnosis 

Share your story to stop the DSM5 

As many of us expected, the new definition of “autism” laid out in the Diagnostic and Statistical Manual, Fifth Edition (DSM5) is being used to deny services and educational placements to people with autism. We are receiving more and more reports from around the US (Buffalo, Dallas, Utica, etc.) of schools, Medicaid providers, insurance companies and local government service providers using the DSM5 to deny services to people who have an autism spectrum disorder. 

If you are facing difficulties or the loss of services as a result of the DSM5 please let us know. Please contact us with your stories. Your stories will be a crucial component in stopping the DSM5. 

All the studies on how the DSM5 will affect people with autism have shown huge numbers will lose their diagnosis, their services, Medicaid and educational placement along with it. One study from the Child Study Center at Yale University showed a 55% reduction, including 30% of those categorized as low-functioning.

We have had bills introduced in several states including New York, New Jersey and Connecticut to require the continued use of the DSM4 and other diagnostic tools such as the ICD. We are working on getting bills introduced in other states. Illinois has already passed legislation prohibiting the use of the DSM5 to deny services. And we are working to prevent the federal government from using the DSM5. 

The DSM5 discards the labels of “Asperger syndrome” and “pervasive developmental disorder not otherwise specified (PDD-NOS)” Schools and insurance companies and Medicaid providers are using these changes to tell people who have an Asperger’s or PDD-NOS diagnosis that they no longer have “autism” and are losing insurance coverage, placements in special education and other services. 

The DSM5 is wrapped in controversy. The federal National Institute of Mental Health considers the DSM5 so flawed that they will not spend any research dollars on studies that use it. We do not have to put up with this. 

Please share this message with friends and family and please post to Facebook and other social networks.

Tuesday, September 24, 2013

Senator Jim Munson Says Ottawa Has Done Little to Address Canada's Autism Crisis

Laverne Stewart of Fredericton's Daily Gleaner reports (September 24, 2013) that National autism advocate Senator  Jim Munson, shown left in his Parliament of Canada photo,  is frustrated, that after years of working to secure a national autism disorder spectrum strategy, Munson said the federal government has done little to address Canada's national autism crisis:
"In a phone interview with The Daily Gleaner, he said the federal government has started to look at what approach each province is taking to address autism.
“They’re different all across the county,” he said.
Munson said people across Canada need to keep pushing the federal and provincial governments for a better approach to addressing the needs of autistic individuals and their families.
“Autism has no borders. It doesn’t. Not in this country or any other country in the world. We live in this world where we say it is a provincial responsibility. It is not. It’s Canada’s responsibility … It is scandalous. We’re in crisis.”"
Senator Munson, is widely respect for his work on behalf of autism disorders  and he has done much over the past 10 years to keep autism on the national agenda, a major challenge since most of that time has seen the Harper government act in opposition to any effective National Autism Strategy.  Even with an Edmonton MP, Mike Lake,  who is clearly a  dedicated father to his own son with an autism disorder the government of  Harper and Lake have taken absolutely NO action to help autistic Canadians in need of effective early intervention, effective learning intervention for school or modern residential care , with autism trained staff, for the many adult Canadians with severe autism disorders who will require such care.
Senator Munson is very diplomatic.   With respect,  I do not agree that Ottawa has done little to address Canada's autism crisis.  The Harper government has in fact worsened that crisis with it's official opposition to a National Autism Strategy, an opposition so ferocious that even Edmonton MP and dedicated Autism Dad Mike Lake voted against Shawn Murphy's private member's motion that would have ensured access to effective, evidence based intervention for autistic children under our national health care plan.   The Harper government's opposition to an effective national autism strategy is so intense that it even cancelled a scheduled national autism strategy conference scheduled for Ottawa several years ago at which community autism representatives were expected to attend.  The event was rescheduled and the "community" autism representatives were hand picked to exclude any prominent autism advocates for a National Autism Strategy.  
Senator Munson has had the interests of autistic children and adults at heart for many years. Unfortunately for autistic children and adults, like my son, the Senator's  frustration is doomed to continue as long as Stephen Harper rules in Ottawa. 

Saturday, September 21, 2013

50% Some WHO Autism Awareness: Autism and Intellectual Disability 50%

Questions and answers about autism spectrum disorders (ASD)

Online Q&A
September 2013
Q: Do persons with autism always suffer from intellectual disability?
A: The level of intellectual functioning is extremely variable in persons with ASD, ranging from profound impairment to superior non-verbal cognitive skills. It is estimated that around 50% of persons with ASD also suffer from an intellectual disability.
The above information is taken from the World Health Organization website page providing Q and A about autism spectrum disorders.  Some will always choose to believe that autism and intellectual disability are totally unrelated concepts.  It is easier to do when autism studies routinely exclude participants with intellectual disability.  The research exclusion of participants with intellectual disability, as admitted by Catherine Lord,  is nothing more than a convenience for researchers and reflects the researchers own subjective biases about the nature and causes of autism disorders.  The DSM5 committee that excludes persons with global developmental delay from an autism diagnosis have also done so based on their own subjective biases and prejudices, nothing more.  They had no data or evidence or coherent rationale to support their decision.  
Parents with children in the 50% spectrum with autism and intellectual disability can't just walk away from our children.  We must do what we can for them and live in fear of what happens to them when we grow too old to care for them or when we ultimately pass on.  These are not realities faced by the DSM5 team who have now given a green light to early autism intervention providers like the CHEO to exclude children with autism and profound intellectual disability by expressly excluding those with global developmental delay from an autism diagnosis.  
"Autism" research will be easier, autism intervention programs will be less strapped thanks to the DSM5 team that, contrary to their claims, have expressly excluded many with severe autism AND intellectual disability.  The basis for the exclusion is nothing more than their own subjective belief in a "pure autism" as that belief was described by Giacomo Vivanti. 
I recommend that every parent of a child in the 50% of those with autism who also have an intellectual disability speak up and provide the world with some reality based autism awareness, make the world aware of the 50% not favored by network television series, movies, major news publications, autism researchers and the DSM5 committee members who arbitrarily decided to expressly excluded many with intellectual disability from the autism spectrum of disorders.

Friday, September 20, 2013

October is Autism Awareness Month in Canada, Canadian Government Still Doing Nothing Eh Mike Lake?

October is Autism Awareness Month in Canada.  You would never know it based on the contribution made by Canada's federal government which has taken a strict, division of constitutional jurisdiction, approach to autism disorders in Canada.  In other words it has said that addressing Canada's growing National Autism Crisis is not a concern of the federal government. 

Harper Conservative MP Mike Lake, who I have met in person and spoken with by phone, and who seems like a genuinely nice guy, speaks lovingly of his autistic son in Parliament with a few words recognizing  World Autism Awareness Day on April 2nd and that's pretty well it.  On Wednesday, February 21, 2007 Mr. Lake himself voted against Bill C-304, the private member's motion brought by Charlottetown Liberal MP Shawn Murphy,  an Act that would have amended the Canada Health Act and provided for the development of a national strategy for the treatment of autism.  

If non Canadians want an idea of how little is done by our federal government to help Canadians and their families suffering from autism disorders they need only refer to the October 2011 statement of former federal Minister of Health Leona Aglukkaq:

Autism Awareness Month

October, 2011

Autistic disorders are heart-breaking conditions because they can cause developmental disabilities in very young children that may affect them for the rest of their lives. These disorders are typically diagnosed in children before they reach their fifth birthday. 

Autistic disorders have a broad range of symptoms. They can be mild to severe and tend to result in problems with social interaction, communication and behaviour. In Canada, it is estimated that Autism Spectrum Disorders (ASD) affect as many as 1 in every 150 children, as well as the lives of their families, friends and caregivers.

Important advances have been made in the way we care for and educate Canadians living with ASDs. Yet more research is needed to learn what causes these disorders and to help develop better treatments and interventions so that those afflicted with ASDs can live more normal lives.

As Minister of Health, I am pleased that the Government of Canada, in cooperation with our colleagues in the provinces and territories, is setting up a national surveillance system to establish reliable data to:  
  • determine how common ASDs are and how rates differ across Canada;
  • describe the population of Canadians living with ASDs; and
  • understand changes in the number of children being diagnosed over time.
This information will help in developing programs to serve the needs of Canadians living with ASDs and their families and caregivers. In addition, the Government has invested approximately $40 million on autism-related research since 2000.

In closing, I want to congratulate the Canadian Autism Spectrum Disorders Alliance and Autism Speaks Canada for their dedicated work in this area.

Leona Aglukkaq

Minister of Health

Government of Canada

Prevalence data, clearly based on existing US information of that time,  is about the extent of the federal government's contribution to autism awareness in Canada. Interestingly neither former Minister Aglukkaq, nor autism dad Mike Lake, mention the parents who advocated with determination in provinces across Canada for early evidence based intervention for autistic children.  Nor do they mention federal political figures who have in the past made great efforts to bring a real National Autism Strategy to Canada including Fredericton New Brunswick's recently deceased Andy Scott, Peter Stoffer of Nova Scotia, Shawn Murphy of PEI, and Senator Jim Munson.

Canada has a national health care plan which does provide basic health care for Canadians.  It is not perfect. Anyone can legitimately cite personal grievances with the system but it is a system that does not exist in the neighboring US.  For that national health care plan developed a half century ago this Canadian father is very thankful.  It would not exist if the  Harper government's constitutional excuses had prevailed during that era. It does  not exist today for the purpose of addressing the  autism specific needs of Canadians suffering from autism spectrum disorders.

During Autism Awareness Month the Harper government, and presumably Mike Lake, will make a statement or two about autism and earn some political brownie points.  If past practice holds firm they will announce no significant federal government efforts to help address Canada's National Autism Crisis.  

Sunday, September 15, 2013

Wave of Attacks on Parents of Children with Severe Autism Disorders Is Reprehensible and Based in Pure Unadulterated Ignorance

I have never read or heard any parent of a severely autistic child excuse the murder of severely autistic children by a parent.  The people who make this allegation about parents are those who object to parents speaking honestly about their children's severe autism disorders.  They also object to parents of severe autistic children describing their parenting challenges and falsely allege that such descriptions depict autistic children as monsters yet it is they who use who use the word "monster" in autism discussions. They  do so in an attempt to suppress the truth about severe autism challenges by falsely alleging that honest descriptions of severe autism  demonize autistic children.

Those who talk about "autism monsters" are the same New York and Washington press corps media darlings who never met a camera or a microphone they could turn down .... unlike the severely autistic children of many parents.  They are the same phony autism self advocates, and parents of very high functioning autistic children,  who make false allegations about parents of severely autistic children calling autistic people "monsters" when in point of fact they are the only ones using that term, a term they use when they cry because others who actually know what they are talking about describe honestly the harsher realities of severe autism disorders.  

Those who are currently attacking parents of severely autistic children are the same bunch of pompous pontificators who tell the world that autism is a joy or a blessing or a culture not ....  heaven forbid .... a disorder or group of disorders.  In their silly, ill informed minds it is wrong to speak about autism as a mental health disorder.  It is the same silly bunch that forget  that they, or their children, actually have a medical disorder diagnosis. These same ignorant self appointed judges even object to terms like "severe" autism as though the severe autism of my son even remotely resembles the "autism" of the corporate trustees in the alleged Autism "Self" Advocacy Network corporation. 

The fact is that severe autism can be difficult, very difficult to deal with day in, day out, over more than 20 years.  It can involve self injurious behavior. It can involve reactive violence.  In almost all cases it involves severely autistic and intellectually disabled people committing violent acts without knowing what they are doing.  It also involve people most of whom will never achieve gainful employment and people who will live, if they are lucky in the care of others. These are facts which are largely unknown in any real sense to the reprehensible attack dogs who feel free to use their corporate sponsored pulpits to attack parents dealing with much more serious challenges, and as they and their children grow older, dealing with the fears of  what will happen to their children after they die.

The truth is that most parents of severely autistic children are reluctant to speak about the harsh realities of severe autism in their home. They have to deal with those realities themselves while the world at large is misled about autism realities. 

Few people today are aware that some autistic children do injure their parents on occasion.  I believe it is fairly described. as CNN's Dr. Sanjay Gupta did, as "reactive", non intentional aggression.  A few years ago, as my son was hitting himself in the head repeatedly at 2 in the morning, I tried to stop him.  I tried various diversionary verbal games that had worked in the past to no avail. Finally I reached for his arms in an attempt to stop him from hurting himself further.  His much younger reflexes moved quickly and he bit me on the bicep with enough force that he pierced not just the skin of my arm but the muscle itself resulting in a calcium buildup that required treatment.  He was not trying, in any sense, to harm me.  My son is a tremendous joy as the pictures on the sidebars of this blog and regularly shown on this blog attest but when he has a meltdown he can harm himself and is very challenging to deal with and these are realities unknown to the "autism as culture" pontificators adored by corporate interests.

Four years ago Gertrude Steuernagel, a university professor, was beaten to death in her own home by her 18 year old severely autistic son who also forcefully resisted and inflicted some harm on police officers who arrested him. That case is not representative of most severe autism realities but some parents are hurt to lesser extents by their severely autistic children who mean them no harm but are having severe meltdowns.  The parents, by and large suffer in silence, for fear there will be consequences for their children or themselves and with the certain knowledge that the presumed knowledgeable high functioning self advocates and parents of HFA persons will condemn them to the public.

What pushes  many fears for parents though is the knowledge that few resources suitable for persons with severe autism disorders, including decent, modern residential care facilities exist for their children.  Advocating for such resources, as I have found out personally, is made more difficult by the feel good  rhetoric of the times.  Waves of feel good cliches like "community", "inclusion", "ableism" etc. have taken the place of sound policy and maintenance of appropriate ranges of services for those most severely affected by conditions like severe autism disorders.  

Ignorance is not bliss when it misinforms the world about serious, severe autism disorder realities. 

Tuesday, September 10, 2013

#autism gene AUTS2 tied to dyslexia ADHD epilepsy ID motor delay microcephaly MORE SYMPTOMS should be part of ASD DX

"Dr. Lynn Waterhouse @autismideasfail 6 Sep   #autism gene AUTS2 tied to dyslexia ADHD epilepsy ID motor delay microcephaly MORE SYMPTOMS should be part of ASD DX"

The above Tweet by Dr. Lynn Waterhouse, author of Rethinking Autism: Variation and Complexity who also worked with Dr. Lorna Wing on the APA DSM-III-R diagnostic criteria for autism,  should be read by any existing DSM5 committee members charged with developing modifications to DSM-5 diagnostic criteria. The DSM-5 has doubled down on the failed approach of simplifying autism contrary to solid evidence and research. 

Dr  Waterhouse's tweet comment on the study Function and Regulation of AUTS2, a Gene Implicated in Autism and Human Evolution suggests to this humble father of a son who suffers from  severe Autistic Disorder (DSM-IV), profound Intellectual Disability and epileptic seizures, including two recent Grand Mal seizures, suggests as does her thorough, well researched Rethinking Autism text that the DSM-5 is taking autism disorders down the wrong path, a path that will cause serious harm to autistic children and adults and to the research necessary to develop successful evidence based interventions for autism symptoms and disorders.

Monday, September 09, 2013

What Happens To Our Children When We Die? Maine Man Killed Himself and Adult Autistic Son in 2010

"Ginger 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.""

The Portland Press Herald , April 28, 2010

The recent murder and attempted murder/suicide cases involving mothers and their children with severe autism disorders are not the first such tragedies to occur.  Unfortunately the same patterns are unfolding ... the refusal to seriously address the need for decent, humane residential care and treatment facilities for adults with severe autism disorders continues,  the attempts by the TPGA and other ND groups like the ASAN corporation to suppress any discussion of the harsh realities of severe autism disorders and the effects on those who suffer from them and their families are continuing.  No one is speaking about what has to be done to help the severely autistic live a decent life for fear of being subjected to irrational accusations that to do so is akin to excusing or justifying the killings.  David H. Gorski, TPGA ideologues Emily Willingham, Shannon des Roches Rosa, ASAN corporation's Ari Ne'eman and blogger Matt Carey have all been eager to attack Sharyl Atkisson and CBS for daring to portray some of the harsh realities that affected Alex Spourdalakis and his mother.

Television (Big Bang Theory, any number of Criminal Minds police investigative type shows)  and the mainstream media generally, other than CBS and  Sharyl Atkisson and a few other honest conscientious reporters, will continue to portray autism as a quirky, brilliant set of personality traits, an alternative way of thinking. The majority of autistic adults and ALL severely autistic adults will continue to live in varying levels of residential care IF they are lucky. But if no one provides humane services, help and hope to the families and persons living with severe autism challenges nothing will change and the tragedies will continue.  The TGPA and ASAN corporate crowd can pretend otherwise but we have to speak up now and provide service now to prevent further tragedies.  We know this because it has happened before and nothing was done.  Below is my blog comment from 2010 concerning the man in Gray, Maine who shot and killed himself and his 22 year old autistic son:

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.

Sunday, September 08, 2013

My Reply to Non Autism Expert Dr. David H. Gorski Also Known as ORAC

Dr. David H. Gorski, who is NOT an autism expert, somewhat ironically,
  attacks parents, professionals and journalists who disagree with
his autism disorders opinions as "quacks"

Dear Dr. David H. Gorski.

Thank you for acknowledging your total lack of autism expertise.  For the benefit of  readers unfamiliar with your "style:" I did not make the statements set out in quotation marks by you,  the learned Dr. Gorski which you altered to suit your (silly) purposes.  The statements in quotation marks are silly distortions, falsifications, of what I actually said in my blog comment on the Alex Spourdalakis case:

1. Orac
September 7, 2013
Shorter Harold (from that link):
“I’m awesome and know autism. I even have a Queen Elizabeth II Diamond Jubilee Medal to prove it! Emily Willingham doesn’t and is exploiting the Alex Spourdalakis murder for evil intent. Oh, and it will be decided by the court, not bloggers.”
That last statement is what I refer to as a “Well, duh!” statement and an attack on a straw man. No one is claiming that the Spourdalakis case won’t be decided by the courts.
Add to that in the comments here:
“You can’t comment on the Alex Spourdalakis case unless you’re an expert in autism or have personal experience with autism. If you do comment your are proclaiming yourself falsely to be such an expert.!
Seriously, though, I share Kreboizen’s curiosity about Mr. Doherty’s stance towards autism biomed.
BTW, I added a couple of fresh quotes about the Spourdalakis case to this post, one from John Stone and one from Kim Stagliano. They are doozies, so much so that I wanted to feature them somewhere. I didn’t think they deserved their own post, however.

2.     In comment #50 on your Respectful Insolence blog rant Is Sharyl Attkisson feeling the heat over her irresponsible reporting of the Alex Spourdalakis case?   I asked a simple question in respect of the trial of Alex Spourdalakis case:

Anyone here know if Dr. David H. Gorski will be appearing in the Court proceedings to give testimony as an autism disorder expert?

You moderated (changed)  my comment to change the name in my question from Dr. David H. Gorski, your actual name, to  Orac, the name  under which you attack and denigrate autism parents, professionals,  journalists and anyone else who questions your opinions.

Harold L Doherty
September 7, 2013
Anyone here know if Orac will be appearing in the Court proceedings to give testimony as an autism disorder expert

Why you ran away from this simple truth is not clear since everyone knows that the Disrespectful AND Insolent blogger Orac is actually Dr. Davd H. Gorski.

As for my blog reference to my QE II Diamond Jubilee medal it  is simply a recognition that my involvement with autism, apart from my son's own severe autism disorder has also included 15 years of successful advocacy for all children and students with autism in New Brunswick, Canada to receive evidence based  (as determined by real autism experts like those at the office of the US Surgeon General, the American Academy of Pediatrics and the Association for Science in Autism Treatment) early intervention and school instruction and support services.   At all times in any autism advocacy in which I was involved I have tried to follow such expertise and the expertise and guidance of local academics and clinicians, who unlike you Dr. Gorski, have considerable expertise in autism disorder issues.

Neither Ms. Emily Willingham nor Dr. David H. Gorski have published any references to indicate they have done any advocacy for children and students with autism disorders or that they have any academic or real life involvement with severe autism disorders and the impacts they have on parents and family members.  Instead they choose to attack parents of children with severe autism disorders about whose challenges both Willingham and Gorski are totally ignorant and ill informed.  

To address Dr. Gorski’s perpetual issue, and mode of dismissing any autism parent on any issue with which he disagrees, I support public vaccination programs and my family, including myself,  receive all vaccinations recommended by our family doctor. This fall I will receive a flu vaccine as recommended by my treating respiratory specialist after I was hospitalized this past spring with a respiratory infection coupled with an aggravated asthma attack. I follow my doctors' recommendations.   

Although I am not convinced of the role of vaccines (in causing autism in some cases) I do recognize that vaccines, like any medical treatment, can have adverse side effects.  This summer my younger son who also suffers from epileptic seizures suffered an adverse reaction to his anti-seizure medication of that time Lamictal/Lamotrogine.  ( For Dr. Gorski's benefit a high percentage of persons with autism also suffer from epileptic seizures, particularly when, like my son, they also have an intellectual disability). The conclusion that my son’s life threatening adverse reaction was caused by his medication rather than an infection was reached, after direct observation, testing and successful treatment  by the ICU team that saved his life, not by me.

Even the US Vaccine Court has recognized that vaccines can have harmful side effects some of which appear to relate to autism symptoms. (Dr. Gorski can challenge Dr. Jon Poling to a public debate  on that issue if he wishes to show off his all consuming  knowledge of science, vaccines and autism disorders.  No I won’t hold my breath waiting for a Gorski-Poling match  I don't  think Dr. Gorski has the parts for that).   What Dr. Gorski who is NOT an autism expert may not understand is that autism as a singular disorder is losing standing the community of autism experts who view autism more as a grouping of autism disorders or symptoms.  Arguably this paradigm shift will call into question some of the concessions made by the US in the Vaccine Court cases where autism like symptoms were acknowledged but not “autism”.

Dr. Gorski's venomous attacks on parents, professionals and journalists who do not share his views have not resulted, as far as I am aware, in an increase in public vaccination rates in the US. Given that fact it is difficult to see why he engages in such childish, unprofessional behavior other than one reason:  he enjoys making, he takes pleasure in making,  such attacks. There is only one person who has degraded Gorski's credibility to speak on autism issues and that person is "Dr" David H. Gorski himself. 

Friday, September 06, 2013

Alex Spourdalakis Killing Exploited by Neurodiversity Extremist Emily J. Willingham

Parents who speak honestly about the realities of autism disorders and the few journalists who dare challenge established views of autism causation are under attack .... again ... by Forbes Columnist Emily J. Willingham, formerly known, a few years before her Forbes career, as blogger Daisy May Fatty Pants.  Not content to express her legal opinions about the outcome of the criminal charges that have been brought against the accused killers of Alex Spourdalakis, his mother and a woman described by Willingham as Alex's "godmother",  Willingham launches into a tirade against parents who describe the harsher realities affecting those with severe autism disorders, parents of children with severe autism, children who do not sit as corporate trustees on organizations like the ironically named "Autism Self Advocacy Network" corporation:

"It’s become typical, again and again, for parents who murder their autistic children to get some kind of a “pass” from the commentariat and the news media because, well, autism is “such a challenge.” That’s in part because some autism organizations and members of the news media have successfully presented autism as a “monster” and a “ kidnapper” instead of as the developmental condition that it is. So in the public mind, an allegedly overwhelmed mother with “ no supports” should certainly be pitied and not judged harshly for killing the “monster.”"

I am a Canadian, not an American, lawyer.  Whether in Canada or in the US though I would not presume to know the outcome of a judicial proceeding.  Since there does not appear to be any question about WHO killed Alex Spourdalakis,  or that his killing was intentional, and if those appearances are confirmed in court,  I assume all relevant evidence will be considered in determining what sentences will be handed out to the accused.  That evidence will probably include the stresses on those involved including the mother's mental health at the time of the relevant actions and the mother's views on why she killed her son.

As the father of a 17 year old son with severe autistic disorder, profound developmental delays and epileptic seizures I know that once I have passed on my son's life prospects will almost certainly diminish.  Now at home and school he is living a happy life by the measure of anyone who knows my son including those who know him best ... his mother and father.  My son is cherished and I would not and could not do what the mother of Alex Spourdalakis did but I can not stand in the shoes of Alex's  mother,  I have not lived the stresses and challenges she has faced.  

The realities of life with a severely autistic child can be very, very stressful and it has been often in our household.    Some people break under pressures.  To date neither I, nor my wife have broken.  As a lawyer I have some advocacy skills and I have been active in advocating for early intervention and school services for children with autism in our province.  Some people have also flattered me as being of strong character .... others have simply pointed out, probably more accurately,  that I am just stubborn. 

I am continuing to advocate for early intervention and school autism  services and for adult autism residential care services.  My autism advocacy efforts have received some modest recognition as a New Brunswick recipient of the Queen Elizabeth II Diamond Jubilee Medal:

I do not mention my modest accomplishments for the purpose of self aggrandizement.  I mention them because despite the challenges faced in our home arising from caring for the severely autistic son  we love I also have some advantages, as a lawyer with an advocacy career,  in coping with those challenges. Not all parents enjoy similar advantages in dealing with the stresses and pressures of raising a child with severe autism disorders. 

 While attending a law school class reunion brunch several years ago I brought my son Conor with me.  I didn't know if, or for how long, he would be able to manage the event.  As it turned out he loved it. The ball room in which the brunch was held, my classmates and families present were quite orderly and the food was excellent.  Conor was quiet and enjoying the view when a waitress at the event approached our table and asked if he was autistic.  I answered yes but asked her how she knew since he had been sitting very quietly, happy and I thought unnoticed.  She replied that she had 3 children of her own.  I have never forgotten that encounter or the realization that for her as a waitress, without a professional advocacy background,  and with the challenges of raising not 1 but 3 autistic children she probably faced greater challenges than I could imagine.  I have tried not to judge other parents of autistic children the way Willingham and other business sponsored "autism is a condition .... not a disorder" Neuordiversity ideologues do.   

Whether Willingham and other business publication writers,  vaccine industry sponsored writers and Neurodiversity extremists like to admit it or not when people receive an autism diagnosis, which is a medical diagnosis,  they do so because autism is a disorder not a "condition".  The term is now formally known as Autism SPECTRUM DISORDER with three levels of severity with respect to the varying levels of support in daily living required: support, substantial support or very substantial support.  My son requires very substantial support as it appears Alex Spourdalakis did. 

It would be better, instead of using his death as a launching pad for attacks on parents who do not share her Neurodiversity "autism is a beautiful, alternate way of thinking" ideology  if Willingham would actually use her bully pulpit at Forbes to explore the harsh realities confronting those with severe autism and their families and actually advocate for services for them.  But no I won't hold my breath waiting for such a great awakening.  

A US court will determine the fate of the mother of Alex  Spourdalakis.  I suspect, despite pressure from Forbes' columnist Willingham and other business sponsored writers and Neurodiversity ideologues the harsh realities of the life of Alex Spourdalakis, his severe autism disorder and the impacts of that disorder on his family will become known to the public.