Wednesday, October 14, 2015

October 18, 2003: Andy Scott Called for a Strong National Autism Strategy; Will October 19, 2015 Deliver A Government That Will Make It Happen?

Andy Scott called for a REAL National Autism Strategy that would ensure treatment for autism 12 years ago,  Munson, Thibeault, and Stoffer have continued the fight tirelessy. Will October 19 bring Canadians a government prepared to make it happen?

Some good work has been done during this current election campaign in drawing politicians attention to the need for a REAL National Autism Strategy.  The Medicare for Autism Now's 1 in 58 campaign has produced considerable discussion in a number of selected ridings.  In Saskatchewan Shannon Hill and the PAAT group have engaged federal and political politicians.  Hopefully the government elected October 19 will do more than shell out money for a do nothing committee with no serious mandate like the Harper Party did during the past year.  The Green, NDP and Liberal Parties have all expressed some support for a National Autism Strategy that includes efforts to ensure that evidence based ABA treatment for autism will be covered by Medicare across Canada as Andy Scott called for 12 years ago. 

Following is text from a commentary I posted in 2010  which records  Andy Scott's call as reported by Tali Folkins in the Telegraph Journal and also acknowledges the tireless efforts of Senator Jim Munson, Nova Scotia NDP MP Peter Stoffer and former NDP MP Glenn Thibeault as reported by 


Renewed Calls for a Real National Autism Strategy

Canada does not have a real national autism strategy but it is not for lack of trying by some dedicated federal politicians  including  Liberal  Senator Jim Munson and  NDP MPs Glenn Thibeault and Peter Stoffer who     have renewed calls for a real National Autism Strategy for Canada.

The struggle for a National Autism Strategy began many years ago including here in New Brunswick where Andy Scott issued a public call for a National Autism Strategy on October 18 2003:

""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." "

Tali Folkins, Telegraph Journal, October 20, 2003

Mr. Scott was successful in getting a commitment by the federal government to a National Autism Strategy recognized in principle but the strategy at that time did not commit to the hard action necessary to provide assistance to all parts of Canada in providing early autism intervention programs.  Even the National Autism Symposium which came out of that commitment was a sham, pure and simple, a sham.  Public autism advocates, including me were excluded from the Symposium.  Those in attendance were all screened by federal health agency involved with organizing the event to ensure that they would go along with the government's do nothing to help autistic children agenda.

Senator Munson has been literally crossing the country for several years fighting for a real national autism strategy  and he has not given up on his efforts.  He organized and  spoke in Ottawa yesterday at an event to mark World Autism Awareness Day this Friday, April 2, 2010:

There’s no reason why we cannot treat autism within our own communities equitably across the nation,” said event organizer Senator Jim Munson. “There is a crisis and I know that we can come up with a plan to deal with the issue that is so important to all of us.”, Ottawa, March 31, 2010

The event was also co-hosted by  NDP MP's Glenn Thibeault and Peter Stoffer who spoke at the event.  Mr. Thibeault also  introduced a private member's bill, seconded by tireless autism advocate Peter Stoffer,  to create a real national autism strategy, one that would actually help autistic children and their families by having the federal government work with the provinces:

"“Autism doesn’t discriminate based on geography.  It’s time for federal leadership to ensure that no matter where a child is born with autism, they receive equal treatment and services of the highest caliber.

Glenn Thibeault,  March 30 2010

I’m very pleased that my colleague has done this.  We’ve been asking for many years for the federal government to work with the provinces to develop a national autism strategy. I hope this will become a reality in the near future.”

Peter Stoffer, March 30 2010

Saturday, October 10, 2015

Would My Son With Severe Autism Disorder Be Happier If I Had Listened to Robison, Ne'eman, Silberman & Other Strangers?

The picture above was taken a few days ago.  I believe anyone can look at the picture and see the happiness on my 19 year old severely autistic son Conor's face.   What is truly remarkable is that his happiness has been a constant feature of his life despite the very severe challenges that he faces with severe autism, intellectual disability (like 50% of persons with autism), epileptic seizures, life threatening adverse reactions to some seizure meds and self injurious behaviors.  What is perhaps even more remarkable is that Conor's happiness has been a constant in his life even without his parents listening to or giving any weight whatsoever to the opinions of self annointed autism experts like John Elder Robison, Ari Ne'eman, Shannon Des Roches Rosa, Jim Sinclair, Michelle Dawson, Steve Silberman or any of the other persons who attack parents for speaking honestly about their child's severe autism disorders and who actually support efforts to find cures and treatment for their autism disorders. 

The following are pictures of my happy son Conor thoughout his life although not in chronological order. We didn't follow or need the advice of the army of neurodiversity activists who are actually arrogant enough to believe that they know better than parents how to raise, care for and love their own children.  I have never hidden my disdain for their attempts to impose their so called self advocacy on other people's children. When I see my son who struggles with far more severe challenges than the self advocates who want to rule the autism world and yet is still happy and loved by those who know him I am very glad that I do not subscribe to their ideology. 

Wednesday, October 07, 2015

Autism, Politics and the Return of the Run Jump Fly Boy

I have been engaged in autism advocacy during the recent Canadian federal election.  I do so at the federal level for the sole purpose of trying to ensure that all Canadians with serious autism disorders have access to Applied Behavior Analysis for treatment of their core autism symptoms.  

I have advocated for over 15 years with other parents and with politicians like the late Fredericton MP Andy Scott who with Nova Scotia MP Peter Stoffer did manage to put autism on the Canadian political map with their joint private members' motion.  The motion set out some directions for a federal National Autism Strategy, directions which have been totally ignored by the current Harper Conservative government and by their pet autism charity Autism Canada which has never contributed to the struggle by parents from BC to Atlantic Canada who fought for, and continue to fight for Medicare coverage of evidence based Applied Behaviour Analysis for those with autism disorders. Watching the Harper Conservatives and their charity Autism Canada continue to ignore the only science based autism treatment for autism can be discouraging but not defeating.

As long as I can have daily adventures with my son Conor, now 19, I will never quit, I will never stop fighting for the right things to be done to actually help people who actually suffer from autism disorders and related conditions.  Conor has had some serious health issues in recent years with the full blooming of his seizure issues and dangerous adverse reactions to some seizure meds.  Today though as we walked Fredericton's North Riverfront Trail that we have walked so often I saw something I hadn't seen in a while ... the Run Jump Fly Boy was back.  He flew down the trail jumping into the air, both feet leaving the ground and enjoying life to the max.  Then he sat on a bench with Dad for a few minutes soaking in the fresh fall air.  And it made his old Dad and grizzled autism advocate feel good too ... very, very good and more determined then ever to continue fighting for meaningful, evidence based treatment for all persons suffering from autism disorders and related conditions.

Saturday, October 03, 2015

Fredericton Liberal Matt DeCourcey: Liberal Party Committed to A National Autism Strategy Addressing Access to ABA/IBI

Fredericton Liberal Candidate Matt DeCourcey

Email received October 2, 2015 from Fredericton Liberal Candidate Matt DeCourcey stating Liberal Party supports creation of a National Autism Strategy addressing ABA and IBI access and coverage under Medicare:

Hi Harold,

Thank you for the email. I apologize for the delay in my response. I want to let you know that the Liberal Party and I fully support the creation of a national autism strategy. Our party recognizes that in certain provinces, autism treatments, including ABA and IBI are covered under provincial Medicare programs and are more readily available in other provinces. Health care access challenges like these are something that the Liberal Party is committed to addressing.

First and foremost, we need a conversation that goes beyond simply mirroring previously made commitments. We need a partner in the federal government that is committed to innovation and collaboration with the provinces and territories to achieve a modern, efficient, equitable system of universal health care. The Liberal Party is committed to that collaboration.

A Liberal government will re-engage the provinces after 10 years of Stephen Harper neglect. We will meet on Canadian health care and negotiate a new Health Accord with the provinces and territories, including an agreement on long-term funding. Furthermore, our party is committed to pan-Canadian collaboration on health innovation. We will work with provincial jurisdictions to overcome obstacles to innovation in health care delivery and access.

Thank you again for your email. I hope that I’ve helped to clarify the Liberal Party’s position on support for those living with autism. If you have any further questions please reach out.



Wednesday, September 30, 2015

Wow! Federal NDP Replies to My Inquiry This Morning Re Negotiations to Include ABA for Autism under Medicare

I confess I was surprised  to get a same day response this evening from the federal NDP to my question this morning addressed to party leader Thomas Mulcair.  The federal NDP committed to continuing the efforts which they have in fact made over the years in Parliament towards creation of an EFFECTIVE national autism strategy.   

To Canada's  federal NDP and leader Thomas Mulcair I say thank you.
8:20 PM (9 minutes ago)

to me
Dear Mr. Doherty:

Thank you for providing such a helpful summary of your discussions with us on this important issue.

New Democrats have a proven record of working with the autism activist community toward increasing awareness and supports for those living with autism spectrum disorders. NDP MPs have, over many years, proposed bills and motions in Parliament toward the creation of an effective national autism strategy. We are committed to continuing that effort as government.

The success of any national autism strategy that includes medically recognized treatments such as Applied Behavioural Analysis and Intensive Behavioural Intervention, depends on the commitment and involvement of provincial and territorial, as well as federal governments. At the moment, for lack of federal leadership, the levels of support vary widely across the country.

Over the past decade, the Harper government has consciously chosen to abandon its leadership role in Canada’s health system and has turned its back on the federal-provincial-territorial cooperation necessary to maintain and improve our public system – including measures to better address autism needs. Stephen Harper has not only refused to renew the national health accord but has unilaterally cut billions of dollars from future provincial/territorial health transfers.

Under Tom Mulcair, an NDP government will live up to its national leadership role and move quickly to re-establish a collaborative working relationship with provincial and territorial governments. A New Democratic autism strategy would be forged within this renewed negotiation and would establish, with provincial and territorial cooperation, access to treatment across Canada.

Canada’s New Democrats | Le NPD du Canada
Ready for change | Ensemble pour le changement

Mr. Mulcair Will the NDP Negotiate A New Health Accord to Include ABA for Autism Under Medicare?

September 30, 2015

Thomas Mulcair 
Leader of the Official Opposition

Dear Mr Mulcair

The Federal NDP has in the past been very helpful in addressing autism on a national level including efforts by Nova Scotia MP Peter Stoffer who worked with the late Fredericton Liberal MP Andy Scott to effect passage of a National Autism Strategy motion in the House of Commons albeit one  which did not address autism treatment coverage under Medicare.  In July 2014 I asked if the NDP would support a real National Autism Stragegy.  I receivd the following positive response from your office:

Dear Mr. Doherty,

Thank you for writing. We appreciate hearing of your advocacy work on behalf of your son and all individuals living with autism spectrum disorders.

Please be assured that New Democrats are determined to help put the needs of Autistic children on the political map. The NDP supports the continuing efforts to create a National Autism Strategy, therefore ensuring that individuals would receive the highest level of care, regardless of which region of Canada they live in.

As you mentioned, NDP MP Glenn Thibeault is helping to provide leadership on this matter along with working to have the Canada Health Act amended to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as medically recognized treatments for individuals living with autism spectrum disorders. (

Going forward you can count on our team of New Democrat MPs to continue to speak out on this matter. It’s time for leadership that will move Canada forward.

Again, thank you for taking the time to be in touch.

All the best,

Office of Thomas Mulcair, MP (Outremont)
Leader of the Official Opposition

New Democratic Party of Canada

Here in Fredericton I asked candidates in the current election the following question  as part of the Medicare for Autism Now!'s 1 in 68 campaign:

I was very pleased to receive the following excellent response to the One in 68 question from the Fredericton NDP candidate Sharon Scott-Levesque:

Hello Harold,

I wish to thank you for your message regarding the inclusion of Applied Behaviour Analysis in Medicare. As you have noted, this is an issue affecting a growing number of Canadian families, and I understand the high costs of treatment are of great concern.

As you know the Canada Health Act requires provinces to cover medically necessary services without naming any particular procedure.  This means that the decision on what to cover has been left up to the provinces, creating a patchwork system where some provinces provide coverage for Applied Behavioural Analysis and others do not.
I recognize that this disparity creates a hardship for families and myself and the NDP are interested in working with the provinces to see this disparity eliminated. This is definitely a subject we will raise with the provinces when we negotiate a new Health Accord.

I do support this change and hope we can work together in the future.

Sharon Scott- Levesque RN
Fredericton NDP Candidate

Mr Mulcair, past NDP contributions have been helpful but the failure by the federal government to see that science based ABA/IBI treatment for autism is included under Medicare means that many autistid children have not received the training which could have helped improve the core deficits of their autism disorders.

NDP candidate Sharon Scott-Levesque's statement of her support is much appreciated. 

Mr. Mulcair, can you confirm that the NDP will commit to  negotiating a new  Health Accord with the provinces which will include science based ABA/IBI  treatment for autism spectrum disorder uner Medicare?


Harold Doherty
Fredericton, NB

Tuesday, September 22, 2015

Join Fredericton Green Candidate Mary Lou Babineau In Signing the Medicare for Autism Now! Petition


Statement on Medicare for Autism now!

While it is true that the tremendous advancements in medicine and technology have granted us longer lives, there are still distressing developments: for instance, the increasing number of illnesses and syndromes appearing and affecting our children. The rates of attention deficit disorder, autism and others are on the rise.
The Canada Health Act has five general principles – public administration, comprehensiveness, universality, portability, and accessibility, but the federal government has not been applying them to support greater national consistency and equal quality of services from coast to coast. In addition, the federal government has failed to develop a national strategy to address such challenges as autism and dementia.
I recognize that it is vital to ensure that the federal government provides funding as necessary and I also think that this funding needs to be accompanied by strong federal government leadership. I pledge to follow through on our commitment to a science-based national Mental Health Strategy and this is something I will advocate for in the amendment process for a new and improved Canada Health Act. 
Mary Lou Babineau
Green Party Candidate for Fredericton
Join Mary Lou Babineau in signing the Medicare for Autism Now! petition 

Saturday, September 19, 2015

Fredericton NDP Sharon Scott-Levesque Supports ABA Coverage For Autism Under A New Canada Health Act Accord

Hello Harold,

I wish to thank you for your message regarding the inclusion of Applied Behaviour Analysis in Medicare. As you have noted, this is an issue affecting a growing number of Canadian families, and I understand the high costs of treatment are of great concern.

As you know the Canada Health Act requires provinces to cover medically necessary services without naming any particular procedure.  This means that the decision on what to cover has been left up to the provinces, creating a patchwork system where some provinces provide coverage for Applied Behavioural Analysis and others do not.
I recognize that this disparity creates a hardship for families and myself and the NDP are interested in working with the provinces to see this disparity eliminated. This is definitely a subject we will raise with the provinces when we negotiate a new Health Accord.

I do support this change and hope we can work together in the future.

Sharon Scott- Levesque RN
Fredericton NDP Candidate

Thank you Sharon Scott-Levesque for supporting the inclusion of ABA for autism treatment in a new Canada Health Act accord.  Harold Doherty

Friday, September 18, 2015

The Environment Is Of Vital Importance - Next Time Include Elizabeth May

This blog is focused on autism disorders, very closely related conditions including intellectual disability and epilepsy.  It is about my son and the joy he brings me each day despite his serious disorders and challenges.  Occasionally it is just a celebration via pictures of the pleasure I experience each day that I live in Canada's Green City .... Fredericton.  Fredericton has been called the Green City, not because of any political party dominance under the green banner although Mr David Coon shook 'the traditional voting patterns one year ago when he was elected as an MLA in Fredericton , but because of its abundant natural growth and wildlife.  It is a beautiful green city and I love Fredericton.  Beyond these topics I don't usually touch directly on politics unless it involves advocating for autism services in  New Brunswick and federally.

I am making an exception today though.  I am asking whoever organizes future debates in this election period to include Elizabeth May in those debates. I am seriously disappointed with the "masterminds", the old boys, who decided to exclude Green Party leader Elizabeth May from the debate last night.  Obviously elections are about electing representatives including a party to form our government.  But elections are also about discussing important public issues and few public issues are as important as our environment.  The wizards that organized yesterday's leaders debate, hiding it so it could barely be found and excluding Elizabeth May did a disservice to all Canadians.  Regardless of the party affiliation for the person we vote for as MP this country can use Elizabeth May.

Elizabeth May can discuss all issues with her very sharp  and well informed mind.  But she brings an exceptionally important perspective  and presence to the discussion of our environment ... the most important issue, in my humble opinion, facing all Canadians. 

Thursday, September 17, 2015

Research Review: Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?

My son Conor, now 19 1/2 years old, stimming, a recognized feature 
of autism spectrum disorder, in this older picture.

Conor, a couple of years ago, at the Chalmers Hospital 
intensive care unit, where he was being treated for  rhabdomyolisis, 
a serious adverse  reaction to his epilepsy seizure meds at that time. 

As the father of a son with autism spectrum disorder, intellectuall disability and epilepsy I have asked myself if these conditions are in fact related. It has been my non evidence based belief, based solely on observing, caring for and loving my son for almost 20 years that he has one condtion that affects him and causes his deficits.

I have attached a copy of the abstract of the reseach review Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?  I  hope to obtain a copy of the study itself and more importantly I hope that the study encourages more study and discussion by neurological researchers and professionals of this subject.

Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?

Autism spectrum disorders and epilepsy commonly co-occur. In this review, we consider some unresolved questions regarding the temporal relationship, causal mechanisms, and clinical stratification of this comorbidity, highlighting throughout the interplay between autism spectrum disorder, epilepsy, and intellectual disability. We present data on the clinical characterization of children with autism spectrum disorder and epilepsy, discussing distinctive phenotypes in children with this comorbidity. Although some distinctive clinical features emerge, this comorbidity also informs convergent pathways in genetic variants that cause synaptic dysfunction. We then move beyond diagnostic categorization and consider the extent to which electrophysiology as a quantitative biomarker may help guide efforts in clinical stratification and outcome prediction. Epilepsy, and atypical electrophysiological patterns, in autism spectrum disorder may inform the definition of biologically meaningful subgroups within the spectrum that, in turn, can shed light on potential targets for intervention.
© The Author(s) 2015.

autism spectrum disorder; biomarkers; electroencephalography; epilepsy; intellectual disability

Jeste SS1, Tuchman R2. J Child Neurol. 2015 Sep 14. pii: 0883073815601501. [Epub ahead of print]

Wednesday, September 16, 2015

Fredericton Green Mary Lou Babineau: A Resounding YES!!! to Including Science Based ABA/IBI Autism Treatment Under Medicare

"Dear Harold,

It was wonderful to speak with you, too! This is an issue that is so critical to me and to my family.

Please post my response as a resounding YES!!!

Hope to see you again soon,

Mary Lou"

The One in 68 campaign of Medicare for Autism Now! is well under way.  Candidates in various ridings are being asked to provide clear answers to the "One in 68 QUESTION": "As a member of parliament, will you introduce or support legislation amending the Canada Health Act to include science-based autism treatment (ABA/IBI) under Medicare"?  The One in 68 refers to autism rates as estimated by credible US authorities.  Our federal government has been made aware over the past decade and more of the need to include science based ABA/IBI under medicare.  Some Canadian provinces including New Brunswick have provided ABA treatment for autism in various degrees,  Others including neighboring Nova Scotia have provided minimal services for autism. 

I hope to speak with all candidates in the Fredericton riding to discuss autism generally and to ask their response to the One in 68 Question.  It was a plesasure to meet with Mary Lou Babineau of the Green Party.  As her answer above indicates she has a real, family based interest in the One in 68 question.  We had a great discussion about autism generally and  how it has affected those close to us. and the need for assistance for those affected by autism. Her very sincere interest in autism is reflected in her answer:

Thank you Mary Lou Babineau for your  resounding YES!!! to inclusion of science-based autism treatment (ABA/IBI) under Medicare.

Tuesday, September 01, 2015

Conor's Superstore Seizure

Yesterday Conor, his mother and I went to the Superstore on Main Street in Fredericton. As we moved to the express cash to pay for our purchases Conor began convulsing and a full scale tonic clonic or grand mal seizure was underway.  I was able to hold him carefully as he fell to the floor to prevent head injury, placing him on his side so he would not choke.  A shopper, who happened as it tourned out to be a paramedic, came by and provided assistance, including timing the convusions which lasted approximately 3 minutes. and providing assessment commentary as Conor recovered.  The 3 minutes of convulsions and subsequent recovery time may not seem like much but if you are holding your son's head up off the floor while he convulses on the floor of a busy grocery store it can seem much longer. 

Three well trained employees of the Superstore also provided assistance directing shoppers away from our immediate area towards a different cash, forming a line between us and other shoppers, getting a thick blanket for under Conor's head, offering moral support and suggestions, making   a wheelchair available for when Conor was ready to be moved to my car, and actually accompanying us to our car in the parking lot.

Thank you to the Superstore who had trained staff on site to assist in seizure situations, thank you to the 3 employees who provided assistance and support and thank you to the paramedic who happened to be shopping in our immediate vicinity as Conor begain convulsing.

Thank you everyone.

Saturday, August 29, 2015

Canada's REAL National Autism Strategy - Shawn Murphy's Bill C-304

There is currently a group receiving money from the Harper government, purportedly to develop a "National Autism Strategy". It is an election year handout from a government which has consistently opposed a meaningful role for the federal government in ensuring that autistic children and adults in Canada receive the treatment and services they need to live meaningful, healthy lives.  

Parents in Canada have fought for many years with varying levels of success for government coverage of evidence based ABA treatment for autism disorders.  In 2006 former Charlottetown MP Shawn Murphy articulated a REAL National Autism Strategy when he introduced Bill C-304 which was defeated by a Harper Conservative-Bloc Quebecois coalition vote.   

L: Former Charlottetown MP Shawn Murphy 
C: NB Senator Jim Munson 
R: Late Fredericton MP Andy Scott
3 Strong Advocates for a National Autism Strategy

Federal politiicans and subservient autism charities should stop pretending and stop yakking about a National Autism Strategy if they do not intend to adopt the REAL National Autism Strategy proposed in 2006 in Shawn Murhpy's Bill C-304:


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


BILL C-304

MR. MURPHY (Charlottetown)

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


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

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


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


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.


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

Sunday, August 23, 2015

Autism Disorder AND Epilepsy (But NO SUDEP!!!) at 6:05 AM

I was awake at 5:30 this morning, had some breakfast, and was enjoying a mug (not a cup, a mug) of coffee when I noticed that the time was 6:05 am.  Startled I jumped up to see if everything was OK with my son Conor.  Conor suffers from severe autism disorder and epileptic seizures, including half a dozen grand mal or tonic clonic seizures, since last Christmas. One feature of Conor's autism disorder is that he gets up at precisely 6:01 a.m. every morning.  He often wakes up before 6:01 but stays in bed until that time and then gets up.  Until this morning I can not recall the last time he might have slept in past 6:01.  I was worried when he had not come out of his room by 6:05. 

I worried because of the epileptic seizures from which he suffers. (My fear was brief; gone as soon as I ran into his room and saw him stirring)  Some who suffer from such seizures have been known to die in their sleep with no clear explanation, a condition called SUDEP, sudden unexpected death in epilepsy.  A special program  called The Center for SUDEP Research which will be a "Center Without Walls for Collaborative Research in the Epilepsies" has been  established in the US by the National Institute for Neurological Disorders and Stroke (NINDS)  to tackle SUDEP.

 A NINDS press release provides an overview of SUDEP and a brief description of the plan of action:

"While the causes of SUDEP are currently unclear, mounting evidence points to seizures that induce structural defects and/or brain circuit malfunction in areas that control cardiovascular and/or respiratory functions. Using a multidisciplinary approach, scientists and clinicians participating in the new center without walls hope to understand what causes SUDEP and how can it be prevented.
One team of researchers will identify genes, predisposition to neurochemical imbalances, and structural irregularities in the brain that may increase the risk of cardiac arrhythmias and respiratory disruptions in epilepsy. In parallel, another team will develop a sophisticated repository for storing and sharing genetic, tissue and clinical data samples collected from 400 study participants with epilepsy per year for three years at each of 10 clinical sites across the country. This team will also analyze the collected samples to identify risk factors for SUDEP."
Some may question why I would have been apprehensive about the possibility of SUDEP when my son did not come out of his room at 6:01 am.  The primary reason is that his adherence to the 6:01 routine was until this morning  almost without exception, a feature of his severe autism disorder.  The second reason is that a good friend who was, and is, very active in autism advocacy in New Brunswick lost her adult son to SUDEP. In that case her son appeared to be sleeping in past his usual time just as my son did this morning ordinarily a blessing for both parent and son. Her son, like mine, suffered from both autism and seizures, and was not sleeping in, tragically he had passed in his sleep.
As the parent of a son with severe autism who suffers from epileptic seizures I can not take any break from routine for granted, even very thankfully as it turned out this morning, one resulting from a few minutes of extra sleep. 

Tuesday, August 04, 2015

Surprise! A Meaningful Autism Disorder Study Provides Evidence of Autism's Harsh Realities

Autism is a disorder which, far beyond its core diagnostic criteria, brings with it higher than average medical conditions and psychiatric illnesses.   The health status of adults on the autism spectrum study confirms the harsh realities of autism disorders and should not be ignored or lightly dismissed by academics, mainstream media or professional "self" advocates who, despite their very high functioning levels, insist on burying the harsh realities of the severely autistic, like my son, in the mounds of autism ignorance they dump on the public landscape. As the study indicates autism disorders mean significantly higher than average psychiatric illnesses and medical conditions.  Not much joy to be found in those realities.This study though should be helpful in bringing a much needed dose of autism realities to the  public understanding of autism disorders and the harsh realities that accompany them.

The health status of adults on the autism spectrum

  1. Lisa A Croen1
  2. Ousseny Zerbo1
  3. Yinge Qian1
  4. Maria L Massolo1
  5. Steve Rich2
  6. Stephen Sidney1
  7. Clarissa Kripke3
  1. 1Kaiser Permanente Northern California—Oakland, USA
  2. 2Kaiser Permanente Northern California—Santa Rosa, USA
  3. 3University of California, San Francisco, USA
  1. Lisa A Croen, Division of Research, Kaiser Permanente Northern California—Oakland, 2000 Broadway, Oakland, CA 94612, USA. Email:


Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive–compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson’s disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations.