Archive for 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.

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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
Canada
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. 

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New Brunswick is a Canadian (and North American) Leader In Early Autism Intervention and School Autism Services


New Brunswick is a Canadian, and North American,  leader in early autism intervention and school autism services.  I do not doubt that that statement is enough to prompt a retort from many jurisdictions.  New Brunswick is not one of the wealthiest jurisdictions in Canada, let alone North America, but the fact is that New Brunswick has had publicly provided early ABA autism intervention to the extent of 20 hours per week for ages 2-5 for several years.  700-800 education aides and resource teachers also  received the same UNB-CEL Autism Intervention training.  

These services have been provided by both Liberal and Conservative governments.  The drive to put these services in place resulted from intense, persistent and well organized parent advocacy.  Above all we had the advantage of guidance from local autism experts.  The UNB-CEL program that provided these autism services was able to do so in both of New Brunswick's official languages, French and English, even though the French language Université de Moncton chose not to participate in developing the program.  Ultimately NB was recognized as a leader in provision of early intervention by Dr. David Celiberti of the Association for Science in Autism Treatment.  

Over the past year several international and local experts, listed in the attached letter from Nicole Gervais, Executive Director, have developed an on line program which has provided ABA based autism training to NB teachers and aides. They did so in conjunction with the NB government's new, combined Department of Education and Early Childhood Development. The predecessor Department of Education's officials had long felt that paying the UNB-CEL for the autism training was too expensive and were clearly annoyed that the program resulted from parent advocacy, professional advice and direct political initiative. Officials including the Director of Student Services moved to assert control over autism programs in the Education Department, even going so far as to threaten me with legal notice to stay out of a meeting between the Department and ASNB at which autism training was discussed. Nonetheless senior department officials essentially claimed ownership of the program developed by UNB-CEL and have, over the past year, developed the in house departmental training program described in Ms Gervais letter:

I am very impressed with both the international and local autism expertise involved with developing the program and I have to believe that this program will bode well for New Brunswick children and youth with autism spectrum disorders. Many of the concerns which I raised in a  recent letter to NB autism officials, and raised several years ago, as an Autism Society New Brunswick representative, when advocating for provision of UNB-CEL autism training for resource teachers and aides are dealt with in this program as described. Given the recognized expertise of those who developed the UNB-CEL program further I am certain that the program itself will be excellent.  

I am much less assured though by the in house elements of the program, particularly the evaluation of the candidates practicum completion, in the context of a collective bargaining environment where the parties conducting the evaluations are representatives of the employer in the collective bargaining relationships with NBTA and CUPE Local 2745 representing the teachers and aides respectively.  I have 30 years experience as a labour lawyer in New Brunswick and federally. I have also been very active as an ASNB representative on autism education issues over the past dozen years. On these issues I do not defer to the Department autism experts or to their in house legal advisers.  There will be grievances filed if any aides or teachers fail their evaluations with resulting pressures on those conducting the evaluations.

CUPE Local 2745 in particular has been averse to even supporting autism training for the aides they represent for fear that older aides would be unable to complete training and their ability to utilize their seniority for preferred assignments would be compromised.  As an ASNB president I had invited and met with the then CUPE Local 2745 President to discuss autism training for TA's (Education Aides) at a breakfast meeting at Bolden's Cafe in Fredericton.   She was totally disinterested in my suggestion that CUPE support parents in advocating for autism training for teachers and education aides.  Her successor, the current CUPE Local 2745 President, Sandy Harding, has been much more openly hostile to our efforts advocating for autism trained education aides in their bargaining unit. 

Notwithstanding my concerns over the in house elements of the program I do recognize the considerable expertise both of the international and the local experts involved in the development of the program and that expertise bodes well for New Brunswick children and students ... particularly if the Department officials have the will to properly evaluate those who take the training.  If education officials can stand up to CUPE 2745 pressure and provide honest, accurate evaluations of autism course participants New Brunswick will continue as a North American leader providing early autism intervention and autism school services to ALL students not just those who can afford specialized instruction or live in Fredericton where evidence based intervention and autism instruction have historically been embraced.

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2 Harmful Acts: Autism Hate Letter And CHEO Removing Autistic Child With GDD From Early Intervention Program


The notorious autism hate letter that targeted an Ontario family and their autistic child has sparked horror and outrage around the world.  As the father of a 17 year old son with severe autistic disorder, profound developmental delays and tonic-clonic (grand mal) seizures I recoiled when I heard the news of this hateful act and I believe I have some understanding of  how the family felt and hope they are handling it as well as possible.  I suspect that the person or persons responsible for this act are now fearful that they may become publicly identified. Why the person felt it necessary to commit such an act is a mystery to me. I am happy to see that people around the world have responded with condemnation of the letter.

At the same time I am disappointed with the lack of reaction to the decision by the Children's Hospital of Eastern Ontario to write off an autistic child with "global developmental delay" by removing him from an early intervention program.  Call it what you want, justify it as you please, but the decision of the CHEO will have a real impact on the child with severe challenges by removing him at a critically important point in his life from the only solidly evidence based intervention for persons with autism and intellectual disability, "global" or not.  

Many have speculated about the mental health status of the author of the notorious autism hate letter. The harmful CHEO decision though was made by people whose mental health status is not in doubt, people who know what harm they have done to a child very much in need of their help, people who obviously lack compassion and concern for the well being of the autistic child with "global developmental delay" that they do not want darkening the "outcomes" profile, or assessments,  of the services they offer. 

A hate letter and a refusal to help.  Both are harmful. Neither can be justified.

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Hemispherectomy: Cut My Son's Brain In Half? No Way .... Unless


I am not a neurologist, neurosurgeon or medical doctor of any kind.  I am not a psychologist or a certified behavior analyst.  I am a lawyer and a father of two sons one of whom has a severe autism disorder, profound developmental delays and ... in recent years has suffered a number of seizures including absence seizures and grand mal or tonic-clonic seizures.  He also suffered a life threatening adverse reaction to one of his anti-seizure medications.

With all that I can still not even begin to contemplate, with all the debates and lack of scientific confirmation of cause or cure that exists in the autism literature I have read over the past 15 years, the thought of surgeons cutting my son's brain in half. I am absolutely NOT second guessing the parents who have approved such surgery for their children.  I assume their children's seizures are much worse and much more frequent than what my son has endured. I believe the process is a last resort and is considered when severe seizures are identified as resulting from a specific location in one hemisphere of the brain. To those whose children have received a hemispherectomy I wish their children continued and total recovery and life improvement.

Apart from the kick to the groin that results from even contemplating such a remedy I am unsure from what I have read that the science of this radical procedure is solid.  I am aware that there are reported instances of success, and confirming studies,  as set out in the NBC News article "Taking out half a kid's brain can be best option to stop seizures, research confirms".  On the other hand there are also doubts about the process as set out in the Medpage Today article "Outcomes Mixed for Brain Surgery in Epilepsy".

I am not pretending to have any expertise whatsoever in assessing this medical procedure to deal with epilepsy.  I have advocated for many years for evidence based interventions for autism disorders because of my son's autism and have looked for the most authoritative guidance from genuine autism experts to do so.  I am simply trying to come to an understanding of epileptic seizures and possible treatments and came across this information about Hemispherectomy, literally surgery to remove half of a child's brain.  As a reader can probably tell, I am surprised, very surprised that such a procedure exists today and I understand that other people have faced these serious challenges before with the guidance of medical experts.  

If my son's condition worsens perhaps I would have to get over it and contemplate this option. Right now all I can say is no way! But .... I know I have probably not seen my son endure what other parents have seen their children endure.  I hope I am never forced by circumstances to make such a decision in my son's case and I admire the love for their children and the courage of the parents who have had to make such decisions. 

The Hemispherectomy Foundation web site is available to provide the information, child and family impact stories, and balanced perspective that are lacking in my emotional reaction to learning of this process. Personally I will continue to read more on this important subject.  If the day ever arrives that this procedure is recommended and necessary to help my son ... I hope the science is clear and I hope I have the courage to proceed with his best interests in mind.

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Children's Hospital of Eastern Ontario (CHEO) Writes Off Child With Autism AND Global Developmental Delay (Intellectual Disability)


CHEO: No Teddy Bears & No Autism Program 
for Severely Challenged Children 

The Children's Hospital of Eastern Ontario has been added as a respondent in a human rights proceeding, and accused of discrimination, after it kicked an autistic child with global developmental delay, severe intellectual disability, out of an early intervention program.

In an Ottawa Citizen article Don Butler reported:

"CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability. “Our clinicians have to make difficult decisions about the appropriate care for each child, and they always strive to base their decisions on the child’s unique needs and best interests.” The only reason a child would be discharged from the intensive behavioural intervention program, the hospital said, “is if the treatment were not working for him or her.”

The CHEO did not indicate what "the appropriate care" would be for a child with autism and global developmental delay OTHER THAN early intervention behavioural intervention.  It would be nice if the health "care" providers of the CHEO could indicate what other care was "appropriate" for this or any other child with autism and severe intellectual disability.

In the absence of any indication as to what other care would be of assistance to a child with autism and GDD, in lieu of early intervention,  the only reasonable conclusion is that the alleged health care providers of the CHEO have simply written such children off as unworthy of assistance.  

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SFARI Highlights Serious Risk of Epilepsy for Teens with Autism and Intellectual Disability


"Children with autism who are older than 13 years and have low intelligence are at the greatest risk of having epilepsy, says one of the largest epidemiological studies on the issue to date1. Children are typically diagnosed with epilepsy after having at least two seizures — uncontrolled surges of electrical activity in the brain. About 2 percent of the general population has epilepsy2. Most studies peg its prevalence among people with autism at 30 percent.
The new study, published 4 July in PLoS One, breaks down this prevalence by age. It finds that among children with autism, up to 12.5 percent of children aged 2 to 17 have epilepsy. The rate is largely driven by epilepsy in children aged 13 to 17, who have more than double that prevalence. The study also found that low intelligence — defined as having an intelligence quotient (IQ) below 70 — is associated with a cluster of symptoms seen in people who have both epilepsy and autism. The symptoms include difficulty with daily living, poor motor skills and language ability, regression and social impairment."
SFARI (Simons Foundation Autism Research Initiative), Risk of epilepsy in autism tied to age, intelligence, Laura Geggel, August 19, 2013

The information in the SFARI article above helps inform the public about a study and an issue of great importance, one that should be brought to the attention of parents, family doctors and pediatricians and clinical psychologists - the substantial numbers of persons with autism, intellectual disability, epilepsy. and the adolescent years during which many with autism and ID first endure epileptic seizures.

The study itself could be a capsule summary of my son's disorders during his first 17 years of life.  Diagnosed at age 2 (literally the day after his second birthday) , after several months of tests, Conor suffers from Intellectual Disability the ultimae taboo in autism world discussions.  Together autism and intellectual disability increase dramatically the chances of developing epilepsy.  As the article and study it reports indicate adolescence is an age when epilepsy appears for many with autism and intellectual disability.  That is exactly what happened with our son Conor.

Conor's first Grand Mal seizure, as I reported on November 17, 2012, (No Autism. Today, Conor's Grand Mal Seizure Scared The Hell Out Of Me) literally shook our world. We had reported what we thought were seizures to Conor's pediatrician 18-24 months before.  He would suddenly stare off looking away or close his eyes as though he was in pain. His pediatrician agreed they were probably seizures but indicated medication was probably not a good idea since there was no falling involved in his seizures.  On November 17 things changed dramatically with Conor's first Grand Mal.  He would later suffer a second Grand Mal,  and shortly thereafter a life threatening adverse medication reaction, which I have also reported on this blog.

Our experience led me to believe that pediatricians and other doctors, as well as clinical psychologists, should inform parents and advise them to be on the look out for the development of seizure activity in their autistic children.  Hopefully this major study reported by SFARI and the prestige of the Simons Foundation Autism Research Initiative will encourage professionals  to inform and educate parents of autistic children particularly those with intellectual disability to be on the lookout for seizure activity and how to recognize them.  They may also want to direct them to Silently Seizing written by Caren Haines, RN and mother of an autistic son who suffered from seizures.  The book pulls no punches in talking about the damage that can occur  from seizures and would be an honest introduction to the seizure activity and its risks. 

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You Can Help the Chalmers Hospital ICU Save Lives!



The Intensive Care Unit (ICU) at Fredericton's Chalmers hospital saves lives even with vitally important monitoring equipment that is more than 10 years old.  We found out first hand how important the ICU is when our son Conor spent 6 days at the ICU with a life threatening adverse medication reaction:


Conor during his 6 day stay in the ICU


Conor, in full recovery mode, 3 months after leaving the Chalmers ICU

I understand that the Chalmers Foundation hopes to meet their target for purchasing the new monitoring equipment by the end of August.  

If you are interested in helping the ICU save lives visit the Chalmers Foundation current project page - ICU Making a Difference and contribute towards purchasing new monitoring equipment for the ICU.  

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Autism Breakthrough? Autism Speaks Recognizes Autism Heterogeneity!


Rethinking Autism Variation and Complexity by Lynn Waterhouse is a recent work which provides a thorough, expert and extremely well researched picture of the variation and complexity of  autism spectrum disorders.

Hopefully the rest of the professional and academic autism community will read Rethinking Autism and come to grips with autism variation, complexity and heterogeneity. The highly influential autism advocacy corporation Autism Speaks has typically done a poor job of representing the heterogeneity of the autism spectrum of disorders. AS has aggressively promoted the careers of John E Robison and Alex Plank two very, very high functioning persons with Aspergers/Autism Spectrum Disorders.  At the same time Autism Speaks has also obscured the existence of the 40% of persons estimated to have autism and an intellectual disability and the large number of persons with autism who also suffer from epileptic seizures.


In what may be a major breakthrough for Autism Speaks, in the post Geraldine Dawson era, and a possible step forward in public understanding of autism disorders a high ranking Autism Speaks official, Michael Rosanoff, Autism Speaks associate director for public health research and scientific review, has acknowledged the heterogeneity of autism spectrum disorders in clear, unambiguous terms, in  a Detroit Free Press article Brain changes of autism may begin in the womb:

"Rather than one disease, autism is now regarded as a collection of conditions with similar traits but different causes, Rosanoff says. People on the autism spectrum are extremely diverse. Some are non-verbal and profoundly disabled; others have successful careers, particularly in science and technology, describing themselves as different, rather than disabled. "Autism is so heterogeneous," Rosanoff says. "We're never going to get to the one cause.""

For anyone else, including other Autism Speaks officials who want to catch up to Mr. Rosanoff in understanding autism disorders, autism researchers and major media columnists interested in a thorough, scholarly view of autism spectrum disorders I strongly recommend Rethinking Autism: Variation and Complexity by Lynn Waterhouse. 

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OTARC Panel: Dr. Giacomo Vivanti: Does Severe Autism Cause Intellectual Disability?

Excellent panel discussion by the La Trobe University Olga Tennison Autism Research Centre (OTARC) with Dr. Giacomo Vivanti, Dr. Cheryl Dissanjake and Dr. Cynthia Zierhut.  The panel comments on the cultural representation of autism as genius in movies such as Rain Man and television series such as the Big Bang theory. Dr. Vivanti talks about autism research tendency to focus on high functioning autism perceived by many autism researchers to constitute "pure" autism research.  He calls this bias into question as non evidence based,  circular reasoning. There is no legitimate basis to separate autism and intellectual disability as "comorbidity".  

Dr. Vivanti's recent paper, Intellectual development in autism spectrum disorders: new insights from longitudinal studies,  has looked at the possibility that severe autism itself causes intellectual disability an hypothesis which itself is controversial.

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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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Conor Countdown Continues In Support of FLEXIBLE, EVIDENCE BASED Inclusion


The Conor Countdown continues, as Conor gets up each day at 6 am and changes the number reflecting the number of days until school resumes.

My son Conor, and his autism disorder disability,  have been well accommodated in schools here in Fredericton, New Brunswick, Canada.  He has benefited both from the assistance of education aides and resource teachers trained in the UNB-CEL Autism program and by placement, at our request, outside the regular classroom for his ABA based instruction.

 His placement is not segregation in the sense of the racial segregation which once prevailed in the American south.  His placement reflects the fact that Conor's autism based sensory sensitivities and need for predictable routine, coupled with his individualized learning style and instruction methods require a quieter learning environment. 

In the regular classroom, early in Conor's education,  he bit his hands every single day until he was removed to a quieter location where the self injurious biting ceased. Now in high school his individualized instruction continues but he has many, many opportunities for socialization at the Leo Hayes High School Resource Centre with other students with special needs, in common areas and activities like school outings, visits to the cafeteria and ... Conor's favorite by far ... in weekly visits to the Nashwaaksis Middle School swimming pool. 

Conor loves his flexible, evidence based schooling so much that the summer, with no school, is a difficult time for him.  We do our best to help him during this period and Conor does his best to help himself.  One of the activities that helps him get through the summer break is the "Countdown".  Each day, every day, at 6 am Conor gets up and changes the number on his board under the question "How Many Days Until School?"  He can see the number getting smaller each day, he can take steps each day to make the number smaller reducing his anxiety and frustration.

Conor's self injurious biting while placed in the regular classroom was a vote against the extreme, non evidence based "regular classroom for all students" philosophy. Now, during the school year Conor packs his lunch bag every night and puts it in front of the side door to the driveway and Dad's car. During the summer Conor does his "How many days until School" countdown.  Both activities are strong compelling statements from Conor in support of the flexible, evidence based, inclusive education he has received at school since being removed from the regular classroom.

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 Reward Chart

Before dinner, we review exactly what behavior is expected, using utensils not our hands to put the food only in our mouths (not on the floor or somewhere else), sitting on the chair (not standing on the chair and not running around the dinning room) and using polite words such as please and thank-you (no yelling, whining or rude talking). If I have to give more than three reminders, they do not get a sticker. I never remove a sticker from the chart because it is only used for positive reinforcement not punishment.  Throughout dinner, I give as many compliments as possible to remind the children to stay on task. The Behavior Management Package, available on the left hand side of the screen, has pre-made behavior charts to make things easier for you, since your life is hard enough.
15 stickers = Restaurant trip
Good sitting
Good Eating
Good Manners
 

Am I to blame for my child'a autism?


 Should I blame myself for my child's Autism?
I work with children with Autism but I also work with their parents to help them help their children. Once a parent becomes comfortable with me, this question always comes up...Am I to blame for my child's autism? I had one parent confess to me that during her pregnancy with her autistic son she considered having an abortion because she was not ready to have another baby. She is so haunted with guilt by this thought, that she believes her son's autism is a punishment for this thought. I have worked with another mother of a child with autism who goes to grief therapy with her husband to mourn the loss of the son they anticipated. Some mother's go over in their minds everything they may have eaten during their pregnancy or anything they may have come in contact with that may have caused this disorder. Some parents reveal to me that they have various relatives with mental disorders, social oddities or speech delays and they wish they would have realized their might be a genetic disposition in their family to Autism.  Then there are things that plague them about their parenting once the child was born, since he seemed typical at first but then became delayed. Was it a vaccine that caused it? Was it an illness or an injury that could have been prevented. They lie awake at night trying not to blame themselves for their child's problems, wondering if someday their child can have friends or at least conversations with their own family.
There is nothing I can offer in way of whom to blame for these distraught parents. There is nothing conclusive about vaccinations causing Autism or environmental factors, or even genetic links. All I can encourage is for parents to accept that their child is unique and love them for that uniqueness. A child with autism can bring things to your life that no typical child can. You find yourself tapping into creativity that you never knew existed in yourself when you are exploring ways to relate and communicate with your child. When you take a few minutes and put yourself in your child's world and try to understand why they call things the weird things they call them and you find yourself speaking not French or German or Spanish but "Johnny" (or whatever your child may be named). It always makes me feel proud when I can have conversations with children then realize someone from outside of their world is listening in and they ask me puzzled, "How on Earth do you know what he is talking about?!" I can smile and explain that we have a special connection.
If you feel frustrated with the things that your child can not do and find yourself agonizing over the obstacles your child is facing or will face in the future, you need to take sometime and think about all the things your child has accomplished and what is special about them. I like to keep a notebook with my clients in which I write only positive things about the child, so when they are having a hard time they can page through it and smile about the good things. Some notes are as small and quick as "Today, Johnny said Girl is brooming, when he saw a picture of a girl sweeping." This is a great antecdote for this child because it is rare that he comments on anything independently. Other notes are long and describe successful social interactions such as eye contact or a smile, or a time when another child went out of his way to include Johnny in their play.

Daryl Hannah has Autism


Famous People with Autism and Videos on Autism
 You are not alone in dealing with Autism.  There are many people in this world who have Autism or live live with someone who has Autism. Some famous people with Autism Spectrum Disorders include:
  • Daryl Hannah, an American actress best known for her roles in Splash, Blade Runner and Kill Bill was diagnosed as a child as being 'borderline autistic'
  • Matthew Laborteaux, actor on Little House on the Prairie
  • Robert Gagno, actor from Vancouver
  • Dan Aykroyd, comedian and actor: Aykroyd stated he has Asperger's

  • Craig Nicholls, frontman of the band The Vines
  • Dawn Prince-Hughes, PhD, primate anthropologist, ethologist, and author of Songs for the Gorilla Nation
  • Vernon L. Smith, Nobel Laureate in Economics
  • Satoshi Tajiri, creator of Pokémon

  • Michelle Dawson, autism researcher and autism rights activist who has made ethical challenges to Applied Behavior Analysis
  • Bill Gates, Microsoft Chairman and world's third richest man (2008)
  • Albert Einstein possibly had an Autism Spectrum disorder, watch the video below for more information.

Make a visual Schedule



  Making a Visual Schedule
Your child most likely uses a visual schedule at school if they are in an autistic support program, if they do not and have trouble with transitions, it would be a good idea to suggest the use of one. You can easily make one for use at home.
You will need:
  • Photos/pictures of objects from daily routine
  • scissors
  • laminator or clear packing tape
  • Velcro (the circular tabs are much easier than the strips)
  • Poster board, large paper, or a clasp and open end envelope
  1. Take pictures of things from around your home: family members, different rooms, specific games, different foods (breakfast, lunch, dinner, snack), your cars and anything that is included in your child's routine. You can also print out pictures from clipart or find pictures online. If you are going on a trip, you could find pictures of where you are going and things to expect to see there.
  2. Put the photos on index cards and write what it is next to it or under it.
  3.  Laminate the labeled photo or cover it in clear packing tape.
  4.  Put Velcro on the back of the laminated pictures.
  5. Laminate a poster board, large piece of paper or a clasp and open end envelope (the large envelope is convenient because you can store the pictures inside).
  6. Put Velcro on the poster board or material that you choose for the display of the schedule.
  7. Each day you put the pictures up according to the day's schedule, have your child help so you can discuss what will happen together. As each event is concluded, your child can remove the picture and put it in a box or envelope. If the schedule is going to change for some reason you can rearrange the pictures together.  Below is an example of a night time schedule that could hang on Johnny's bedroom door. 

A little sign language



Sign Language and Visual Communication for People with Autism
For some people with Autism, verbal communication is extremely hard or impossible but there is good news...93% of communication is non-verbal. This non-verbal communication includes body language, facial expressions and vocal tones. If your child is non-verbal it does not mean that they do not understand language, it just means their brain has trouble making all the necessary connections for speech. To give your child an opportunity to communicate with you and the rest of the world, try learning sign language with them. You can attend ASL (American sign language)  classes or pick up a sign language book at the library. If you are feeling sad that you have never heard your child say "I love you" because their brain won't help their mouth say the words, try teaching their hands to say it. Make the sign every time you say "I love you" he should make the connection after a few uses.
                                                   
 
       You Sign I, L and Y at the same time to make the phrase "I Love You"

You can create name signs for each person in your family. Name signs are typically just the first letter of a person's name along with a specific motion. For instance, Johnny's name sign is made by drawing a J with your pinky near your chest. Click Here to see the ASL alphabet.
                 
This is the sign for mom                          This is the sign for dad
                        
This is please                         This is Thank-You                      This is your welcome
You can also create a communication board, similar to the visual schedule to facilitate communication. Take pictures of everything important, laminate them and Velcro the backs. You can arrange the pictures according to relevance and have your child point to different pictures to communicate their different needs and wants. Your child could arrange the pictures themselves to tell you a story. Just because they cannot speak does not mean they do not understand what is going on. If you have not seen the CNN documentary Autism is a World, I would highly recommend checking it out of your local library or finding it online, it explores non-verbal communication in great depth.


Sometimes it seems that my child has no idea what I am talking about!
You tell your child that the family is leaving the house in ten minutes to go to the store, he looks at your feet while you are talking, says "okay" then goes back to playing.  Its time to leave and he throws a tantrum, you think "I gave him a warning that we will be leaving, why is he having a problem transitioning?"  For some people with Autism, words are just NOT enough information because they have special visual needs or they may have an auditory processing disorder.  Sign Language, visual schedules, and social stories are all tools to help you communicate in an easier to understand non-verbal way.
Different Visual Needs
Due to different brain structures and synapse formations, people with autism process information differently. They may have an auditory processing disorder, which means they hear words or sounds but as the word or sound enters the ear then gets transferred to the brain, something gets switched around in the nerves and the meaning is lost. This will cause a child to be confused and many times frustrated. Other times, what is said will be taken literally. If you were to say, "quit pulling my leg" a person with autism might get upset or confused because they are not actually pulling your leg, so they don't understand how to stop. When your child is confused and frustrated, you might also get confused and frustrated because you have no idea how to make yourself any clearer. Sometimes a person with autism needs to have a visual to understand what is being said, what is meant or what is going to happen. Velcro and a laminator are very useful in making visuals that are easily seen and long lasting.

No one understands


 
It feels like no one understands what my family is going through!

You get stares and dirty looks when you go to the store and your child is making noises or acting in ways that the other children are not. Other people might make you feel that you are not doing a good job disciplining your child. Try to talk to other parents who have children with special needs so you don't feel isolated. Remember, there are many successful people in the world with Autism.
How to prepare others for interaction with your child
You know your child better than anyone else, so when you leave them alone with someone else, be it a babysitter, teacher or therapist, you need to share information with them about your child's specific needs.
This is a sample behavior sheet that I give to someone who is taking care of my "Johnny" when I am not around.

Behavior Suggestions for Johnny

  • Try to be happy and speak softly to him he really responds to voice tone. If you speak softly he will speak softly back, if you yell he will yell. Smile and he will smile. Be mindful of your eyebrows, he gets excited or angry if your eyebrows are too expressive.

  • Johnny does not like to be touched, especially with cold hands. If you don’t touch him he will keep his hands to himself better. Although, sometimes he does enjoy hugs and high fives (ask first).

  • Your time with him will be easy if you stay calm and happy and use patience.

  • Praise him for good work and using sentences. Praise him as often as possible, he needs attention. Positive attention is much easier than negative attention.

  • Always remind him of rules before starting an activity. Tell him he needs to make good choices. He works well for rewards. Example “ If you want chocolate milk with lunch, you need to make good choices”.

  • Never ask him to make choices just tell him. Example  Don’t say “Can you pick this up?” Say “Pick this up please” (if you give him the opportunity, he will say no)

  • Transitions will be easier for him if you let him know what is coming next and how much time until the next activity.

  • Remind Johnny to keep his hands to himself before a situation arises, such as running games. If you fold your hands he will copy and know it means to keep his hands to himself.

  • Remind him to take deep breaths if he feels angry, excited or silly.

  • Tell him to throw his angries, exciteds or sillies away if deep breaths are not working. He will grab them from his mouth and put them in a trash can. If a trash can is not near by you can tell him to put them in his pocket.
Talk to Other Parents with Children with Autism
It helps to know that you are not alone, other parents have similar experiences to yours. You can trade stories and techniques. What is the sense of reinventing the wheel? If someone has already discovered a great technique, they will probably want to share it with you. There are support groups online as well as in your community, it would be helpful to join one.
 
You can give your child's teacher a  book to read to the class about Autism. There are books available that help describe different disorders to young children to help them become more understanding and accepting of differences. Here is a list of some good books:
Andy and His Yellow Frisbee
By Mary Thompson

The Autism Acceptance Book: Being a Friend to Someone with Autism                                              By Ellen Sabin
I Am Utterly Unique: Celebrating the strengths of children with Asperger Syndrome and High-Functioning Autism                                                                                                                                       By Elaine Marie Larson, Vivian Strand
There are a few movies about Autism that are worth watching and worth recommending to those who will interact with your child.
Mozart and the Whale (2005) A love story between two adults with Asperger's syndrome, whose disabilities sabotage their budding relationship.
Autism is a World (2004) A documentary on an autistic woman's inner world, her writing, and the friends she made while in college.
     
I do not recommend Rainman unless your child is a savant.

Sensory Diets


Different sensory needs include auditory (hearing), proprioceptive (muscle&joint), tactile (touch), vestibular (movement & positioning) and visual. A sensory diet can be constructed to proactively meet your child's sensory needs and enable you to help your child get his body under control.
Sensory Diets

Sensory Diets can be constructed with the help of your occupational therapist. They will utilize different activities such as: deep pressure, massage, heavy work, swinging, bouncing, stretching, squeezing, pulling, exercising, listening to music, doing aromatherapy and many other things to stimulate different senses.

  • Listening to different types of music soothing or invigorating or listening to nature sounds such as birds or running water gives Auditory input, which means processing what we hear.
Example: Johnny has sensitive hearing, loud noises make him feel upset so he covers his ears with the backs of his hands and hums loudly. In his case head phones either playing soft music or soundless ones used just to muffle sound could be carried around and worn when the environment becomes too noisy.
  • Pushing a wall, lifting furniture or weighted objects, pulling a loaded wagon, crossing your arms or playing tug of war can give you  Proprioceptive input, which  is the feelings experienced by the  muscles and joints (joint compression) and that let you know where your body is and what it is doing.
Example: Johnny is acting very unresponsive, he is laying on the floor and not paying attention to what you are telling him. His body needs to be woken up. Have him carry the kitchen chair across the kitchen then change your mind and have him put it back. Keep changing your mind until he seems more awake.
  • Rubbing lotion on the body, getting rolled over with a yoga ball, playing with a tension/fidget ball, molding clay or play dough, playing with an ice cube, using a vibrating toy or toothbrush can all give Tactile input which is the sense of touch.
Example: Johnny is clenching his jaw and making noises. It seems that the only thing he can think about is his jaw. Give him his vibrating toothbrush and have him brush his teeth for two minutes, then give him lotion to rub on his jaw. To be proactive have scheduled times throughout the day to use his lotion make sure his needs are met.
  • Swinging, see sawing, and spinning can give Vestibular input which provides the dominant input about our movement and orientation in space.
Example: Johnny is walking around flapping his arms, tell him to come outside and swing with you, have him really use his arms to lean forward and backward with the motion of the swing.
  • Visual input is basically what we see. Some people with autism (ASD) may need visuals to help them interpret what they are hearing and some people may become over-stimulated because they feel bombarded by images.
Example: You are trying to tell Johnny it is time to wash up for dinner but he is moving his head back and forth while looking at the dozens of family photographs sitting on the mantle. Try un-decorating your home, leave up only one or two important photos or provide Johnny with a space of his own that has very little on the walls and no clutter that he can go to when the visual become overwhelming.

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