Our Happy Conor is Back! And Dad Is Happy Too!

The top photo above was taken a year and a half ago,  shortly after Conor recoved from a very serious adverse reaction to his seizure med at the time, Lamtrogine, which resulted in two weeks in the hospital including an emergency room visit and 6 days in the ICU where the excellent medical team there, including our family doctor, probably saved his life. 

The second  picture above was taken a few months ago, shortly after Conor started a second medication, Divalproex, after which he became agitated.  I was able to get him outdoors walking at the time which seemed to help. I second guessed myself at that time and continued with the Divalproex despite increased agitation.  A number of weeks ago Conor's Divalproex was increased as per the Neurologist's direction and things have been brutal for Conor since then.  I had to bring him home from school twice because he was aggressive with staff.  He was very aggressive at home with his mother and with me.  He was most aggressive though with himself smashing his head with both hands dozens of times a day.

A week ago I began decreasing Conor's Divalproex meds and he has been off of that medication entirely for a few days.  The result has been positive with his aggression and self injurious behavior dropping sharply and the last couple of days being joyful again.

I am not criticizing the Neurologist, nor am I making a generalization about Divalproex or offering

medical advice.  All I am saying is while on Divalproex Conor suffered with increased Divalproex resulting in increased self injurious behavior and aggression.  The school staff were kept in touch about the medication issue and the withdrawal schedule and noticed the same patterns including the recent return of our joyful, happy Conor.   I won't jump to any big conclusions or assume things will never get bad again but I will say that .... today ... Conor's Dad is one happy camper.

Autism Jabberwocky, Excellent Autism Blogger, Signs Off

There are lots of autism blogs on the internet.   One of the best autism blogs, possibly the very best,  has been the Autism Jabberwocky blog which features the thoughtful, reality based, well informed and well written commentaries of "MJ" who has now indicated, in his comment, The End of the Beginning, that the initials stand for Matthew Joseph and  that he will no longer be commenting on the Autism Jabberwocky site.  In departing Matthew Joseph has left us with 8 excellent points to consider.  I am posting those points below because I think they are helpful for many, particularly parents with newly diagnosed autism disorders to consider:

"1. Your children are your children, your children are not "autism". "Autism" is just a word used to describe a set of behaviors, it is not something they can be.  So love your children but feel free to hate "autism".
2. Not everything your children do is because of autism.  Autism may be pervasive developmental disorder that has an incredibly broad impact but it doesn't cause every problem behavior does not it grant every area of talent.  So if your child is good at something that is probably because they are good at it.  If they have issues it could be something other than autism causing them.
3. Autism is not "genetic", at least not in the way that most people mean when they say "genetic".  Genetic alterations do play a role in autism but autism is not solely (or even largely) controlled by our genes.  So ignore all of the breathless announcements about new discoveries about "autism genes" because it is not going to be that simple.  Autism (or more likely autisms) is going to look a lot like cancer when it comes to genes - there will be genes that increase risk but none that directly cause the condition.
3. Autism is an ongoing disruption of biological homeostasis.  Your body is an exceptional machine that works extremely hard to keep things in balance.  Autism, whatever it is, comes in and takes a sledgehammer to that carefully maintained balance and then keeps it out of balance.
4. Recovering from autism is a two step process.  First you have to try and find and correct the underlying biological issues that are preventing progress and causing problematic behaviors and then you have to teach the skills that were not learned normally.
5. The number of people with autism is growing at an extremely alarming rate.  You can argue about what factors are artificially inflating the numbers but at the end of the day you are still left with a substantial real increase.  The rate of this growth shows no signs of slowing down.  If you are not concerned about this then you are either not paying attention or are in denial.  Autism is not the only developmental disorder growing like this.
6. The online autism "community" is largely filled with asshats pushing their own ideology.  You can and should ignore most of them.  Don't focus on an ideology but instead find the bits and pieces that work for your family.
7. Organizations such as ASAN are top 1 percent of the autism world.  Yes, most of them have something that you might be able to call autism but it bares little resemblance to what the other 99 percent of people with autism look like.  Their slogan might be "its all about us" but they really have no clue about what life is like for the other 99 percent of people with autism.
8. Parents, you need to achieve peace with your children having autism.  You need to take time for yourselves and to find a way to relax and enjoy yourselves.  If all you  do is live and breathe autism 24 hours a day then you will burn out."

Goodbye Matthew Joseph I still hope you will comment on occasion be it on your blog or on Twitter.  

Best wishes for you and your family.

Manitoba Autism Crisis Demonstrates Need For A REAL Canadian National Autism Strategy

Canada, despite a private members motion championed by the late Fredericton MP Andy Scott and Nova Scotia MP Peter Stoffer which called for one, does not have a REAL National Autism Strategy.  The failure to enact a REAL National Autism Strategy means that in some provinces very few autistic children receive intensive early ABA intervention.

The  private member's bill, Bill C-304, introduced by former PEI MP Shawn Murphy, set out below was crushed by the Harper Conservatives and Quebecois MPs.   Had Bill C-304 passed 9 years ago many,  many more autistic Canadian children would have received early ABA intervention and made the substantial cognitive, linguistic and behavioral gains reported decades ago by Dr. Ivaar Lovaas and confirmed by studies and reviews since.

 Manitoba's Wait List Autism Crisis

One example of the checkerboard pattern of ABA service for autistic children in Canada is Manitoba as reported in the CBC article Autistic children's families frustrated by therapy wait-list:

"Some Manitoba families with autistic children say they might get turned away from a highly sought-after therapy program because they have been on a waiting list for so long, their children may end up being too old to qualify. Families that want access to applied behaviour analysis (ABA) therapy for their children must wait roughly 1½ years on a list. The program is available only to children under the age of five. With the waiting list so long, some children may end up being too old to qualify for ABA, meaning they would be turned away this September.

"I just can't imagine where kids are going to wind up without having ABA," said Guy Mercier, president of Manitoba Families for Effective Autism Treatment. "Without ABA in my son's life, he wouldn't be where he is."

The ABA program gives children three years of intensive therapy, teaching them social skills and life skills before they enter kindergarten. It also provides support for five years while they are in school.

Samantha Bawtinheimer said she placed her 2½-year-old son, Noah, on the waiting list for ABA soon after he was diagnosed with autism last September.

Bawtinheimer said she is frustrated by how long it will take for Noah to get into the program. "You're supposed to be there to protect them. You're supposed to be there to help him. I can only do so much," she said. "I've done my research. I can't do it all. I still have to work, I have to provide for him. I can't do it all. I need their help."

The Manitoba situation proves the need for a real national autism strategy. 

History of the Struggle for A REAL National Autism Strategy

The struggle for a REAL National Autism Strategy is summarized following from a commentary on this site on March 29, 2014:

In The Courts Autons (BC) and Wynberg/Deskin (ONT)

Canadian parents fought initially , and ultimately unsuccessfully, through the courts in BC (Auton) and Ontario (Wynberg/Deskin) for autism treatment coverage under medicare and autism services before commencing their more overtly political efforts, including the Medicare for Autism NOW! campaign.

History of the Struggle for a REAL National Autism Strategy in the Maritimes

Andy Scott Fredericton NB MP,  Peter Stoffer NS MP, Shawn Murphy PEI MP,  Senator Jim Munson NB

Here in the Maritime provinces we took a political approach to developing a national autism strategy with the NB efforts in  which I was personally involved beginning  in 2001, primarily by many discussions with our Fredericton MP, the late Andy Scott.  In 2003  Andy Scott, made a public commitment in 2003 to work toward a National Autism Strategy at a tribute to his 10 years of service as an MP at the Boyce Famers' Market, an event I attended and reported on to the members of the Family Autism Centre for Education (FACE):

"October 19 2003

Hello everyone:

Some good news for those interested in autism issues emerged last night  at the Boyce Farmers' Market in Fredericton New Brunswick as Frederictonian's gathered to pay tribute to MP Andy Scott's  10 years of service as an MP on behalf of Frederictonians and as an advocate for human rights, services for the disabled, and cultural harmony. Andy announced that he would be meeting with Paul Martin in the hopes of pursuing a national Autism strategy. Although health care is primarily within provincial juridiction some health issues, such as breast cancer, HIV, etc. have been approached on a national level because of the magnitude of the issues involved.  While we have all heard political promises in the past,  Andy Scott has a proven track record of commitment to, and follow through on, disabilities and human rights issues.  Great news.

Harold Doherty

Family Autism Centre for Education (FACE)"

Andy's comments at the Boyce Farmers' Market were also featured in a 2003 Telegraph Journal article by Tali Folkins:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." 

Andy did answer the call on behalf of autistic Canadians and  actively pushed for a National Autism Strategy which he ultimately realized with the passage of Motion M-172.  However, the motion was essentially a commitment in principle with few obligations being undertaken by our federal government but it did help put autism on our national agenda and it was Andy Scott being Andy ... getting done what could get done ... with a view to moving forward further in future.  One of the specific items that the federal government did commit to in the motion was a national surveillance program, a program that would tell us how many Canadians now suffer from autism disorders.  It is a commitment that has still not been honored 8 years later. 

Andy Scott himself did continue the fight   as demonstrated in his June 5, 2007 statement in the House of Commons:

"Autism 

[Table of Contents]

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy.

It has been more than a year since I introduced Motion No. 172. My private member's motion called for evidence based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program.

The motion was adopted in good faith and supported by the government. However, it was very disappointing to see no reference to a national autism strategy in the recent budget or any discussion this spring.

Recently, I joined my colleagues from Charlottetown and Sackville—Eastern Shore and Senator Munson at a rally in Halifax that reinforced that there are families with autistic children across Canada who need the government's help.

The Conservatives should move off their default position of jurisdictional excuses, show creativity and compassion and start helping these Canadians."

Jean Lewis, FEAT-BC, Medicare for Autism Now!

NB MP Andy Scott, FEAT-BC, Medicare for Autism NOW!'s Jean Lewis

National Autism Rally, Halifax, May 26 2007

Andy Scott's reference to his colleagues from Charlottetown and Sackville-Eastern Shore were  references to PEI's Shawn Murphy and Nova Scotia's Peter Stoffer both of whom, along with Andy Scott and Senator Jim Munson, also worked tirelessly toward achieving a National Autism Strategy.  The rally of which he spoke was a Halifax rally organized by Jean Lewis and FEAT-BC who had been raising autism awareness, lobbying politically and fighting for national autism coverage in the Courts for several years and continued to do so with its "Medicare for Autism NOW!" efforts.  I attended the FEAT autism really in Halifax and had the privilege of meeting Jean Lewis, several of the BC advocates and tireless Nova Scotia autism advocate Jim Young.  Under the BC leadership there have been subsequent national meetings in Oakville and Toronto.

NS MP Shawn Murphy, Senator Jim Munson, NB MP Andy Scott 

National Autism Rally, Halifax, May 26 2007

Nova Scotia MP Peter Stoffer,  National Autism Rally, 

Halifax, May 26 2007

In 2006 Shawn Murphy went on to introduce his own private member's bill, Bill C-304,  in the House of Commons which, if passed, would have put Canada well on the way to establishing a REAL National Autism Strategy:

C-304

First Session, Thirty-ninth Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

_____________________________________________

FIRST READING, MAY 17, 2006

_____________________________________________

MR. MURPHY (Charlottetown)

1st Session, 39th Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

An Act to provide for the development of a
national strategy for the treatment of
autism and to amend the Canada Health
Act

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

SHORT TITLE

1. This Act may be cited as the National
Strategy for the Treatment of Autism Act.


NATIONAL CONFERENCE

2. The Minister of Health shall, before
December 31, 2006, convene a conference of
all provincial and territorial ministers responsible
for health for the purpose of working
together to develop a national strategy for the
treatment of autism. The Minister shall, before
December 31, 2007, table a report in both
Houses of Parliament specifying a plan of action
developed in collaboration with the provincial
and territorial ministers for the purpose of
implementing that strategy.

AMENDMENTS TO THE CANADA
HEALTH ACT

3. Section 2 of the Canada Health Act is
renumbered as subsection 2(1) and is
amended by adding the following:

(2) For the purposes of this Act, services
that are medically necessary or required under
this Act include Applied Behavioural Analysis
(ABA) and Intensive Behavioural Intervention
(IBI) for persons suffering from Autism Spectrum
Disorder.

Bill C-304 was defeated soundly by a coalition of Harper Conservatives and separatist Blog Quebecois votes in the House of Commons. During debates in the House of Commons Harper conservative MP Mike Lake from Alberta, the autism face of the Harper government, a father of an autistic son, fought against the Murphy bill and helped vote it down to defeat.  

The hard truth is that there will never be a real National Autism Strategy as long as the Harper government rules in Ottawa.  Nor will a REAL NAS emerge from national autism charities that were never part of the struggle for a national autism strategy to begin with and who do not acknowledge the efforts made by parents across Canada who fought hard and long for a National Autism Strategy. National charities dare not speak contrary to federal government policy for fear of risking their charitable status. 

A real National Autism Strategy, even a real, current estimate of the number of Canadians who suffer from autism disorders will not come into existence until the Harper government is retired from office and will only come into existence with parent driven initiatives for whom helping their autistic sons and daughters is their most important objective.   Until then we will have to accept US figures for autism prevalence.  Accordingly, let it be known:

1 in 68 Canadians has an autism spectrum disorder. (Many of whom still do not receive effective ABA early intervention)

Is 2015 The Year New Brunswick Finally Addresses Serious NB Adult Autism Residential Care and Treatment Needs?

During the  2010 New Brunswick election  Dr. McDonnell, as noted above, was interviewed by CBC on the subject of adult autism care. The interview and analysis posted on the site are no longer available online but he stated at that time (bold highlighting added by me):

Paul McDonnell, September, 2010

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

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.  Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."  (Bold highlighting added - HLD)

 The autism residential care and network system described by Dr. McDonnell was raised with the parties during the 2014 election.  The Green and NDP parties responded positively to the matter with mentions in their election platforms.  The Liberal and Conservative parties ignored autism issues entirely so there is no reason to assume that the currrent Liberal government will address the needs of  New Brunswick's autistic adults particularly those with severe autism disorders and co-morbid conditions like my son Conor who will probably be forced to live out his life in the Restigouche Psychiatric Hospital in Campbellton's in NB's northern border with Quebec.  All the community cliches in the world will be of no assistance to my son and other severely autistic adults most of whom will be living many hours drive from their families.

It is not clear for the reasons that follow why the government of New Brunswick has refused to addressed the serious health and residential care needs of autistic adults.  The usual suspects have been:

1. Costs

The network described above by Paul McDonnell could actually have resulted in government cost savings. Some of NB autistic adults have been sent to Spurwink Maine for many years at costs of several hundred thousand dollars per year per person.  With the current Liberal government dedicating millions to capital investment during its election term it would be a good opportunity to build the autism centre referenced by Paul McDonnell a centre which could provide quality residential care for those in need of such and professional expertise and oversight for community autism homes and assisted living environments around the province.  

2.  The Taboo Against "Institutions", "Centres", "Bricks and Mortar"

In New Brunswick various groups and individuals have persisted in  repeating community cliches like "no bricks and mortar" when various special care needs are raised. (To my knowledge ALL of these individuals live in bricks and mortar buildings). These same people simply ignore the evidence that their total faith in undefined community solutions has not addressed the needs of autistic adults in NB.

In the autism context a meeting was held several years ago with Ombudsman and Youth Advocate officials Bernard Richard and Christian Whalen.  I attended in the company of NB autism expert Paul McDonnell.  McDonnell's proposal for an autism center and network was raised with these gentleman, neither of whom has any known autism expertise, but was quickly dismissed, and not discussed in any meaningful way, by Mr. Richard or Mr. Whalen.  Mr Richard was interviewed recently on CBC when the government announced funding for a youth complex needs centre.  Mr Richard, of Moncton, once again, voiced the "no bricks and mortar" cliche before advocating for Moncton as the best location for a youth complex needs centre.

There are in today's world existing examples in other areas of mental health care which could be borrowed to develop the physical structure necessary to accommodate residential care and treatment needs of autistic adults in a way that would allow for a range of environments to accommodate those with greater liberty needs and those with greater security, assistance and health care needs. The Hogeway dementia care village facility is one such example which is receiving world wide recognition.

The costs and and community concerns would in fact be addressed by the autism network described by McDonnell.  Such a centre would see monies being spent constructively in New Brunswick which would save monies spent  outside New Brunswick and would provide New Brunswick autistic adults with residential care and treatment in their communities for those who are capable of living in a group home or assisted living environment and in a centre in Fredericton near the autism expertise of UNB, UNB-CEL and the Stan Cassidy Centre for those requiring permanent residential care and treatment.  Fredericton, an increasingly bi-lingual city, would also be able to provide centre services in French and English as demonstrated by the UNB-CEL autism intervention training program.  The UNB-CEL autism program has received international recognition as  a model early intervention program for training autism support workers and clinical supervisors and has done so in both French and English.  (The Universite de Moncton was asked to participate in the initial stages of developing the UNB-CEL autism program but for reasons unknown to me declined the opportunity to participate and has developed no similar program).

The need for an adult autism care network can not be denied in New Brunswick.  With an estimated  population of 11,000 New Brunswick'ers with autism many are also adults living in a hodge podge of arrangements without badly needed professional oversight or assistance.  Others have been  sent to a variety of institutional care settings.  Some well known cases are the autistic youth living on the grounds of the Miramichi  youth correctional centre (2005) before being sent to Spurwink Maine, the adult who lived at Centracare (2003) before being sent to Spurwink and those who have resided, and continue to reside, at the Restigouche Psychiatric Hospital on the Quebec border far from most families in southern-central NB. Unconfirmed reports indicate that some autistic adults have lived for periods of time on general hospital wards.

It is time to save money, provide assistance and positive, meaningful life development to those autistic adults who can not function independently in living accommodations near their home,  AND extend their life expectancies. 

It is time to walk away from the addiction to cliches while shipping autistic adults to locations far from families. 

It is time, it is long past time, since the events in 2003, 2005,  to seriously address NB adult autism residential care and treatment requirements and build the  autism network envisioned by NB autism expert Paul McDonnnell in 2010.

Autism Society Canada Misrepresents Autism On Its Web Site Makeover By Hiding The Many with Autism AND Intellectual Disability

The Autism Society Canada web site was down briefly and I had hoped, notwithstanding past experience, that once it was back up the ASC would have started presenting an accurate picture of autism disorders to the Canadian public and families with autism disorders. My hopes, faint as they might have been, were dashed again.  ASC, on its "new" web site face, once again misrepresents autism disorders by hiding some harsher facts, in particular the fact that  as much as  50% (World Health Organization) of persons with autism disorders also have an intellectual disability:

"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."

(World Health Organization, September 2013) 

Canadian families of children with autism disorders should be aware of the very high % of persons with autism disorders who also suffer from an intellectual disability.  Those families should also be aware that many with autism and intellectual disability have very high rates of seizures and increased mortality.

Statements below from a more reliable source that takes autism disorders more seriously than the Autism Society Canada appears to:  the American Academy of Pediatrics in a statement concerning Management of Children with Autism Spectrum Disorders published in 2007 and reaffirmed in 2010 and 2014. 

American Academy of Pediatrics 

Management of Children with Autism Spectrum Disorders,  (2007)

Statement of reaffirmation  126 (6): e1622. (2010)

Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 

are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.

Self Injurious Behavior, Seizures, Reduced Life Expectancy Are My Son's Severe Autism Disorder Challenges Not Concern Over The Expression #MSSNG

Self Injurious Behavior, a  common occurrence  in some with severe autism, can appear in  a flash and transform a happy, fun filled moment into pain and suffering as it does above with my son Conor.  The very high functioning autistics who do not share my son's disorder and challenges have no right to dictate what autism research will or will  not be conducted,  research that may someday help my son and others with severe autism disorders. 

The world has recently seen the very talented, successful  Jerry Seinfeld "identify"  with autism before retracting his statements. More recently John Elder Robinson and other high functioning autistics got very upset over the use of the expression #MSSNG coined for the Autism Speaks research campaign and demanded that autistics must  dictate the course of autism research.  My son Conor with his severe autism disorder, intellectual disability and epilepsy has no understanding of this high functioning autism outrage.  His problems are more in the nature of the serious self injury engaged in often as set out in the pictures above. 

Today, with the holidays disrupting his routines, Conor engaged in one of his most serious meltdowns in some time hurting himself and the walls and when Dad intervened I felt some of it too. I honestly can't relate to the concern that #MSSNG is somehow an insult and travesty to those with autism disorders not when I am trying to restrain my powerful, 210 lb  6'1" son without hurting him and at the same time protect myself in the middle of a serious meltdown. 

Statements below from the AAP.

American Academy of Pediatrics 

Management of Children with Autism Spectrum Disorders,  (2007)

Statement of reaffirmation  126 (6): e1622. (2010)

Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 

are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.

Conor's Back Yard 2014 - Fredericton's North Riverfront Trail

"Professor" John Elder Robison's Limited Understanding of Autism and Autism Research

MIT Technology Review:  John Elder Robison is a professor at the 

College of William & Mary and the author of Look Me in the Eye.

John Elder Robison is a former "free ranging "Aspie", a successful businessman, writer and now apparently a professor as indicated in the MIT Technology Review article Fixing Autism Research We need to come to grips with what autism really is.  I met Mr Robison briefly at the IMFAR conference in Toronto a couple of years ago. It is not clear in what sense he suffers from a DSM5 ASD clinically significant  functioning impairment (mandatory criterion D) in relation to his "autism" symptoms so as to qualify for an autism spectrum disorder diagnosis but he has embraced the autism label nonetheless and presents himself as a voice for the "autism' community.  John Elder Robison may well be a voice for the extremely high functioning "autism" community but he certainly does not speak for my adult son who suffers, and I use the word "suffers" intentionally, from his severe autism disorder.  Nor do Robison's comments indicate in any meaningful sense that the understands what autism is in a general sense.

My adult son with severe autism disorder like many with autism disorders also have an Intellectual Disability diagnosis and suffers from seizures.  In recent years the CDC has estimated between 41-44% of persons with autism disorder also have an ID.  The WHO estimated that 50% with an ASD also suffer from ID. Many also suffer from epileptic seizures.  The estimates in that regard  vary widely but 30% is a number often cited with an even higher number of that percentage located among the severely autistic end of the spectrum. 

Like many with ASD, ID and epilepsy my son suffers meltdowns, self injurious behavior, reactive aggression, sensory issues and extreme obsessive behaviors.  Changes of any kind can be very challenging. His health is affected in many negative ways by his limited communication abiliity of any kind and no computers do not reveal an inner intelligence which he can communicate via keyboard.

Professor J E Robison complains that autism is not a disease.  I assume he means that autism is not contagious and I am sure the world appreciates that insight.  It is recognized medically as a neurological DISORDER. More recently well informed autism experts like Lynn Waterhouse have acknowledged that autism is very heterogeneous in nature and may better be viewed from a symptom perspective rather than as a uniform disorder.  Many parents of children with severe autism including me have long complained when extremely high functioning persons like JE Robison present themselves as autism experts and present a view of autism to the world based on their considerable abilities and gifts.

"Professor" Robison's life experience as an extremely high functioning free ranging Aspie gives him no  insight into severe autism disorders and the potential benefit down the road, admittedly far down the road,  for persons with severe autism,   It would be nice if the good professor Robison would wake up some day and realize the harm he is doing to people like my son by his misrepresentations of what autism means,  I am not however holding my breath waiting.  

SUDEP The Global Conversation Combating The Myth That Seizures Do Not Kill

Many with autism disorders also suffer from epileptic seizures and should be aware of the risk of SUDEP, Sudden Unexpected Death in Epilepsy.  The following is a News Release about SUDEP the global conversation a joint effort of several epilepsy and SUDEP awareness ogranizations in the US, Canada and Australia:


Families, researchers, clinicians and organisations unite to promote a global conversation on sudden death in epilepsy

A global collaboration of charities, researchers and families has created a unique online knowledge resource on sudden deaths in epilepsy. This new, web-based ’Global Conversation’ combats the myth that seizures do not kill.

Sudden Unexpected Death in Epilepsy (SUDEP) is when a person who has epilepsy dies suddenly and unexpectedly, with no other cause of death established. It accounts for the majority of deaths in people with chronic epilepsy. Deaths are also caused by accidents, status epilepticus, and suicide. 

Jane Hanna, one of the editors, who has campaigned for awareness and action on epilepsy deaths since her partner died suddenly in his sleep, aged 27, in 1990 said: “The mortality burden of SUDEP alone is high, second only to stroke amongst all neurological disorders because so many of the sudden deaths are in young people. Most people with epilepsy will live a full and normal life but we need to acknowledge the risks, especially with convulsive and night-time seizures. There are simple measures that can be taken that are known to reduce risk that people may want to know and try.“

The new ‘Global Conversation’ website www.sudepglobalconversation.com combines the latest research by international experts with the powerful accounts of bereaved families making it easily accessible to anyone in the world.

The ‘Global Conversation’ will also be promoted at an exhibition at the American Epilepsy Society annual meeting in Seattle, between 6-8 December, 2014 which will be attended by about 4000 delegates. 

FACTS

For over 100 years, a myth that seizures were not fatal hindered research and action to prevent epilepsy deaths worldwide. The myth was first broken in 1996, when the hard and long journeys of some tenacious families collided with those of pioneering researchers and clinicians from all over the world.

The success of the ‘Global Conversation’ is attributed to a powerful three-way collaboration between SUDEP Action, Epilepsy Australia and Canada’s SUDEP Aware which, together, reach out to research teams from many countries and over 60 experts from around the world, to gather and disseminate the latest information worldwide. It follows SUDEP Action’s (the working name  for Epilepsy Bereaved) campaign during the 1990s, which sparked a partnership between the UK charity and Epilepsy Australia in 2005.

The new, web-based resource follows the success of two books that were produced by the partnership with more than 16,000 hard copies distributed to epilepsy communities around the world at international conferences held in Paris, Rome, Chicago, Montreal, London, Glasgow, Singapore and India, between 2005 and 2014.

The original books online have received more than 300,000 hits. 

Sudden Unexpected Death in Epilepsy (SUDEP) is the term used when someone with epilepsy dies suddenly, often after a seizure that involves a loss of consciousness.

Dr Rosey Panelli, International Research Officer at SUDEP Action, who alongside Tamzin Jeffs, from SUDEP Aware, is promoting the resource at the Annual Conference of the American Epilepsy Society said, “By working together we can push forward the global conversation on SUDEP, which is vital to research and action on SUDEP wherever we are in the world.”

In 2013, SUDEP Action launched a Call for Openness on SUDEP, which is supported by the partnership and by the International League Against Epilepsy (ILAE); the International Bureau for Epilepsy (IBE) and 13 other epilepsy organisations around the world. 

Visit https://www.sudep.org/call-openness-campaign.

Click here to follow the SUDEP Global Conversation on Facebook

So Called Autism Brain Study Excluded 50% of the Autism Spectrum, Those With Intellectual Disability

Credit (or Discredit) Carnegie Mellon University

What's Wrong With This Picture? It Omits 50% of The Autism Spectrum, Those with Intellectual Disability

The picture above, credit (or discredit) to Carnegie Mellon University,  is from a Science Daily review article  Brain representations of social thoughts accurately predict autism diagnosis which reviews an MRI study published in PLOS ONE, December 2014, Identifying Autism from Neural Representations of Social Interactions: Neurocognitive Markers of Autism,  purporting to demonstrate different brain responses to social interaction stimuli in what are described as "autism" brains as compared to control brains of persons without autism. The review article states that it is based on materials supplied by Carnegie Mellon U the institution that conducted the study in which fMRI imaging was used to compare brain reactions of 17 persons with high functioning autism with the brain reactions of 16 control subjects with similar IQ  levels:

As the father of an almost 19 year old low functioning son with severe autism, profound intellectual disability ... and epilepsy I understand why it may not have been feasible to include intellectually disabled autistic adults in an fMRI study.  What the study authors and the journal articles reviewing the study could have done would have been to describe the results as applying only to those with high functioning autism. After all they expressly and intentionally excluded the 50% of the autism spectrum with intellectually disability (WHO, September 2013) and should have claimed that their results applied only to high functioning autism.  Arguably they could have talked about a "high functioning autism brain" but they certainly can not assume their results apply to the low functioning half of the autism world.  

The study authors should have been more accurate .... and honest ... in what they tell the world about their high functioning autism study.  They could have started with the title of their study and called it:

"Identifying HIGH FUNCTIONING Autism from Neural Representations of Social Interactions: Neurocognitive Markers of HIGH FUNCTIONING Autism".

Dear Elected Representatives: New Brunswick Needs Adult Autism Residential Care and Treatment

Dear Hon. Premier Gallant, Deputy Premier Horsman,Speaker Collins,  Ministers, Party Leaders and Government Advisers:

Re New Brunswick's Lack of Adult Autism Care:

I am sure that you are all grappling with important issues in these weeks following a provincial election. Many issues have generated intense discussion and serious attention from all of our public leaders.  The issue of adult autism care however was not one of those issues. Neither the current governing Liberal Party nor the previously governing Conservative party mentioned autism in their platforms.  The Green Party did propose regional autism group homes which would certainly help those with autism spectrum disorders who suffer from light to moderately severe autism challenges .  Only the NDP recognized the need for an autism center in New Brunswick which could provide treatment and permanent residential care for those, like my son, with severe autism disorder, profound developmental delay (intellectual disability) and epileptic seizures the latter two conditions being commonly associated with severe autism disorders.  

It is difficult to understand why our governing parties and their leadership have refused to take the steps necessary to help adults with autism lived decent, secure lives in New Brunswick. There can be no dispute about the need to address this issue.  In a province where the expressions "community" and "inclusion" are used like currency the approach to adult autism care has been to banish autistic youth and adults to the Regional Psychiatric Hospital in Campbellton on our northern border with Quebec and in some cases out of the province to the Spurwink facility in Maine.  It would be much more humane, and much more in keeping with the values that I believe all New Brunswickers share, to keep our autistic adults closer to home, closer to their families in group homes as suggested by the Green Party and in cases of greatest severity in an autism specific center as indicated in the NDP election platform. 

New Brunswick has achieved international recognition for the steps it has taken in early intervention autism services, most recently in the Summer 2014 Newsletter of the Association for Science in Autism Treatment which interviewed Professor Emeritus (Psychology) and practicing clinical psychologist Paul McDonnell the intellectual architect of NB's autism model.  The newsletter interview mentions the role of parents in advocating for the establishment of the early autism model.  As one of those parents I can also confirm that we advocated with some success for the autism specific training of teacher/education aides and resource teachers to work with autistic students.  The development of the  program for training our educational resources has included a leading world expert in the area Dr. Eric V. Larsson.

 In addition to these resources NB also has the  Fredericton based Stan Cassidy Centre autism team which has been a critical tool in addressing the needs of autistic children and youth with tertiary care level challenges. Fredericton is also the home of the UNB-CEL autism intervention program which developed the autism program that trained most of NB's early intervention workers and school aides.  These successes can provide the base for development of a decent, humane and secure adult autism care system in New Brunswick.  It would save money currently being spent in Maine and live up to the community and inclusion cliches which sound so very good and which do reflect NB values; values which unfortunately have not prevailed in providing for adult autism care in NB.

Paul McDonnell Ph.D. is the person without whom the early and school year autism successes for which this province has been recognized would not have happened. In 2010 in a CBC interview he described the need for a NB adult autism care system and what such a system should look like:

"What remains to be done? While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups.Our greatest need at present is to develop services for adolescents and adults.

What is needed is a range of residential and non-residential services and these services need to be staffed with behaviorally trained supervisors and therapists. Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities."

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision.That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dymamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff.

When we, as parents guided by Prof. McDonnell's autism expertise, advocated for early intervention services there were many naysayers who opposed our efforts both within and outside government advisory circles even some in our autism community. They were wrong.  We succeeded and we will continue the fight for decent youth and adult autism care and treatment services in NB.  

We ask all public decision makers on all sides of the legislative aisles to now show the initiative and leadership to get this job done to extend NB's internationally recognized model to provide care for NB's autistic youth and adults.

Respectfully,

Harold L Doherty

Conor's Dad