Facing Autism in New Brunswick

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

2015-10-14T05:06:00.001-03:00

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 MetroNews.ca.

WEDNESDAY, MARCH 31, 2010

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.”

MetroNews.ca, 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

I Remember Canada - A Beautiful Reminder From Teresa Doyle

2015-10-12T18:47:00.001-03:00

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

2015-10-10T21:57:00.003-03:00

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.

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

2015-10-07T18:20:00.000-03:00

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.

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

2015-10-03T04:35:00.002-03:00

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.

Best,

Matt

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

2015-09-30T21:13:00.004-03:00

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

www.ndp.ca

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

2015-09-30T09:25:00.001-03:00

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. (http://glennthibeault.ndp.ca/post/thibeault-re-introduces-autism-legislation)

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.

Regards,

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?

Respectfully,

Harold Doherty

Fredericton, NB

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

2015-09-22T16:51:00.001-03:00

https://www.change.org/p/government-of-canada-medicare-for-autism-now

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.

Sincerely,

Mary Lou Babineau
Green Party Candidate for Fredericton

Join Mary Lou Babineau in signing the Medicare for Autism Now! petition

here: https://www.change.org/p/government-of-canada-medicare-for-autism-now

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

2015-09-19T02:28:00.003-03:00

Hello Harold,

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

Regards,

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

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

2015-09-18T20:34:00.002-03:00

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.

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

2015-09-17T07:52:00.001-03:00

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?

Abstract

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.

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

http://www.ncbi.nlm.nih.gov/pubmed/26374786

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

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

2015-09-16T05:26:00.000-03:00

"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.

Conor's Superstore Seizure

2015-09-01T04:16:00.002-03:00

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.

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

2015-08-29T04:53:00.002-03:00

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:

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.

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

2015-08-23T07:27:00.002-03:00

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.

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

2015-08-04T18:41:00.002-03:00

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

¹Kaiser Permanente Northern California—Oakland, USA
²Kaiser Permanente Northern California—Santa Rosa, USA
³University of California, San Francisco, USA

Lisa A Croen, Division of Research, Kaiser Permanente Northern California—Oakland, 2000 Broadway, Oakland, CA 94612, USA. Email: Lisa.A.Croen@kp.org

Abstract

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.

A Positive Adult Autism Meeting with Social Development Minister Cathy Rogers

2015-07-30T17:54:00.007-03:00

Minister of Social Development Cathy Rogers

Photo Source: NB Liberal Site

July 14, 2015 Meeting with Social Development Minister Cathy Rogers
at 551 King Street, Photo by Harold L Doherty

On July 14, together with autism advocate Cynthia Bartlett and Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell I met with Social Development Minister Cathy Rogers and 3 of her advisers. The meeting had been requested by Minister Rogers when it became clear in the Legislature gallery that I, and presumably some others in the gallery, were unhappy with the government’s response to opposition MLA Ernie Steeves motion on adult autism care. Bathurst MLA Brian Kenny, with whom I had spoken during our small demonstration outside the Legislature earlier that day was talking to Minister Rogers and pointing up at me. A short time later Mr. Kenny came up to the visitors’ gallery and asked me to come out to the hall where Minister Rogers asked me if we could schedule a meeting to which I agreed. I was thankful for the opportunity to address the adult autism care issues which have never been addressed in any coherent, systematic and well informed manner. I was very pleased that Cynthia and Paul were available to attend at the meeting and share their experience and expertise.

The principle around which our discussion took place was the same principle on which those of us who advocated as parents for early autism intervention in NB relied on in our successful advocacy efforts – the need for an evidence based approach. Fortunately the Minister and her advisers seemed to be in agreement with this principle at outset and needed no convincing. That may not sound like much today but it was not always an easy sell in our early advocacy efforts in a province where clichés about community and inclusion are often sold as solutions to the most challenging disorders and deficits.

The evidence with respect to adult autism care in NB is clear: we do not have a plan to address in a humane, professional, reliant manner the needs of autistic adults, particularly those at the severe end of the spectrum, in New Brunswick. We have housed New Brunswick ‘s autistic adults in a variety of hospital settings from general hospital wards to the Restigouche Regional Psychiatric Hospital in Campbellton far from the bulk of NB’s population, far from most families. We have housed a NB autistic youth on the grounds of the Miramichi Correctional Facility only because no other location had the resources to provide proper care and safety. That youth and at least one young man were sent to the Spurwink facility in Maine for several years at a cost to the Province of approximately $300,000 per year per person.

What we discussed was the proposal developed largely by Paul McDonnel with input from parent advocates including Dawn Bowie, Lila Barry, Cynthia Bartlett and me and enunciated in principle in his 2010 CBC internet interview and analysis:

September 2010, CBC, N.B. can be a leader in autism services (Analysis, Paul McDonnell)

"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. The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger's Syndrome that have no access to professional services of any kind.

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 can do much, much better.

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 resident 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."

There was also discussion of some of the serious issues that often accompany autism including intellectual disability, seizures, self injury, wandering and the need for surveillance of some autistic adults to ensure their safety.

The Minister did not make any clear commitments, at least as far as I understood our discussion. She did say that other departments would have to included in the discussion, a point on which we agreed.

My assessment is that the meeting was positive and that the Minister sees autism care as a need that really has to be addressed in New Brunswick.

It is up to parents though, as it always has been, to keep these needs in the forefront if we want decent places for our children to live as adult; places where they can live happy lives, according to their level of need, with proper health care, education and security.

6 Years Later New Brunswick STILL Hasn't Addressed Adult Autism Care

2015-07-12T12:11:00.002-03:00

Years have passed, governments have come and gone, but still the elected members of

the New Brunswick legislative assembly, despite international recognition for its parent

advocacy driven early intervention and school autism services, have not seen fit to provide

a systemic adult care autism system in New Brunswick.

The following blog commentary is a re-post, word for word, of a commentary I posted on May 5, 2009: Autistic Adult Care Improvements Long Overdue in New Brunswick. Since then one group home has received some training for staff from UNB via the Department of Social development. Beyond that though there has been very little progress. As I said in concluding 6 years ago:"The time to help autistic adults is overdue though ... long overdue" Today, over 6 years later, that statement is truer, and sadder, than ever:

I have said often on this blog that I am very happy with the progress that has been made here in New Brunswick in addressing the needs for evidence based autism treatment and in ensuring that autistic children receive a real, quality education. There are still problems that have to be addressed concerning preschool interventions for and education of autistic children but the distance we have traveled in the six years since then Health Minister Elvy Robichaud announced in the New Brunswick legislature that the government was committing funds specifically to autism is remarkable. That progress has, for the most part though, been confined to autistic children. New Brunswick's adults with autism disorders are badly in need of improvements to the barely existent residential care system for autistic adults.

Despite the substantial, and increasing, numbers of autistic adults and the complexity of the challenges they face New Brunswick does not have a residential care system dedicated specifically to adults. New Brunswick adults with autism who require residential care currently live in group homes with persons with other challenges. The problem with a general residential care system is that the staff working in such places will not generally have autism specific training. Nor are the locations necessarily appropriate for persons with autism disorders.

The good will of New Brunswick's political leadership, from either of the two parties that have governed, is no longer a matter of debate in the mind of this autism dad. The path to progress began under the Conservative government of Premier Bernard Lord and has taken some major leaps forward under the Liberal government of Premier Shawn Graham. It would be dishonest for me not to acknowledge what both leaders and their parties have done for New Brunswick's autistic children. Far from slamming these leaders and their parties I personally thank them for what they have done to help our children with autism spectrum disorders.

The story is different though when it comes to New Brunswick's autistic adults where all aspects of autistic life have been largely neglected or mishandled. While there are many pressing needs at the adult level the fact is we have long been in desperate need of an autism specific residential care system with properly trained personnel. Such a system would require autism specific residences in each region of the province with autism trained staff.

There is also a need for a central adult autism treatment and residential care facility in Fredericton. That need is proven by the fact that New Brunswick has sent its more severely affected autistic youths and adults to facilities outside the province including to Maine in the United States. We currently have autistic adults living in the psychiatric facility in Campbellton. I know of at least one instance in Saint John where an autistic adult was living on a hospital ward. In the past an autistic youth, charged with no crime, convicted of no crime, was housed on the grounds of a youth correctional facility in Miramichi while awaiting a spot at the Maine facility.

The talent reservoir for the establishment of an adult care centre already exists in Fredericton which is centrally located providing relatively convenient access compared to more remote locations. The Stan Cassidy Centre which provides pediatric tertiary care services is located in Fredericton on the grounds of the Chalmers Hospital. The main campus of the University of New Brunswick and its excellent, community involved, psychology centre is located in Fredericton. The UNB-CEL Autism Intervention Training program is located in Fredericton and has already indicated that it foresees no problem in developing a training program for adult care workers. All of these resources could be drawn on to supplement and support a modern, secure community based and autism specific residential care and treatment facility.

New Brunswick needs a publicly operated, not for profit, community based residential care system for autistic adults with facilities in each region and a central facility in Fredericton capable of providing in house residential care and treatment for the more severely autistic adults for whom the group homes have already been proven not to be a solution. The political leadership of this province has shown a conscience, substantial good will, and determination in helping autistic children. The time to help autistic adults is overdue though ... long overdue.

Dr. Glen Davies at Medicare for Autism Now! Rally June 27 2015

2015-07-01T02:39:00.001-03:00

Dr. Glenn Davies at the Medicare for Autism Now! rally June 27 2015 discusses evidence in support of behavioural intervention in treating autism, the lack of autism coverage under Canadian Medicare compared to the US Medicaid state to state mandate and the example of Wisconsin which is far ahead of all Canadian jurisdictions in providing treatment for autism.

Conor After Another Seizure

2015-06-29T20:04:00.000-03:00

Conor has been on a good run for the previous 7-10 days and today was pretty much the same until 6:15 this evening when we heard a loud thump uupstairs. His mom ran upstairs and screamed for help when she saw him convulsing on the floor with thick fluids oozing out of his mouth. We had to keep him on his side with his head away from any corners or hard objects. This was Conor's 4th grand mal seizure since Christmas. Conor's convulsions did not appear to last too long compared to some previous seizures .. approximately 2 minutes. Stilll 2 minutes of your son in convulsions is enough to scare you all over again. Conor also recovered quite well. The picture above was taken 45 minutes after the seizure and while he was still a bit groggy he was regaining alertness, speech and walking ability. He is now sleeping soundly exhausted from another seizure. I just checked and his head was on the side on his pillow and he was breathing loudly but clearly. Dad is starting to relax ... a little bit.

Medicare for Autism NOW! Campaign Kick Off Today!

2015-06-27T09:54:00.001-03:00

Vancouver, BC – Today, the Medicare for autism Now! Society (“MFAN”), a non-partisan, not-for-profit, all volunteer organization, announced the launch of its nation-wide One in 68 campaign. “We will be holding a Campaign Kick-off this Saturday, June 27^th, at Douglas College, New Westminster, between 10:00 am and 2:00 pm,” said MFAN director and campaign manager, Dr. Sherri Brown, “It will outline the rationale for our initiative and lay-out our action and advocacy agenda leading to the federal election on October 19^th, less than four months away.”

The MFAN campaign takes its name from the fact that, currently in North America, one in 68 children are being diagnosed with Autism Spectrum Disorder (ASD). “There is a national epidemic of staggering proportion happening in Canada,” said MFAN director, Jean Lewis, “And, unlike the situation in the United States, our federal government has to date failed miserably to demonstrate long overdue leadership in addressing this major and growing national health care challenge.”

The One in 68 campaign will seek firm commitments from those who wish to hold elected office in Ottawa to vote in favour of necessary changes to the Canada Health Act so that persons living with ASD across our country will have science-based treatment for their core health need covered by Medicare. MFAN intends to focus its efforts on a limited number of highly competitive electoral districts in various parts of Canada. In Metro Vancouver, these include: Burnaby North-Seymour, Coquitlam-Port Coquitlam, Delta, Surrey Centre, Surrey-Newton, Vancouver Centre and Vancouver Quadra.

For further information, contact Jean Lewis at 604-290-5737 or at jean.lewis@telus.net.

Canada Needs A REAL National Autism Strategy: Medicare for Autism NOW!

2015-06-13T16:51:00.002-03:00

A Medicare for Autism Now! Rally was organized by FEAT-BC

and held in Halifax, Nova Scotia on May 26, 2007.

Shawn Murphy, Jim Munson, Andy Scott

Former PEI MP Shawn Murhpy, New Brunswick Senator Jim Munson and the late Andy Scott a former Fredericton NB MP all advocated actively for a REAL National Autism Strategy with Shawn Murphy presenting an unsuccessful provvate member's Bill C-304, to include autism treatment in medicare coverage and then Fredericton MP Andy Scott working with Nova Scotia MP Peter Stoffer to intoduce a National Autism Strategy bill which was passed and put the issue on the national agenda although no serious efforts have been made since then. Senator Munson chaired the Senate review of autism services in Canada and issued the Pay Now or Pay Later Report.

Nova Scotia MP Peter Stoffer co-sponsored a national autism bill with NB MP Andy Scott.

Fredericton MP Andy Scott with Jean Lewis of FEAT-BC and Medicare for Autism NOW!.

Jean was and IS a determined advocate for Medicare coverage of Autism treatment.

The photos above were all taken at the Medicare for Autism Now! rally at Halifax, May 26, 2007 organized by Jean Lewis and her fellow advocates from British Columbia. Medicare for Autism Now! has remained active since then and remains one of the few legitimate national autism organizations in Canada. Under the current government charities seeking to maintain their charitable status dare not address the need for a real National Autism Strategy for fear of losing their charity status.

The fact is that the current government has accomplished nothing of substance in addressing national autism issues. In 2015 Canadians must still rely for information about the prevalence of autism disorders on US figures. There is no discussion of taking steps to ensure that children in each Canadian province. There is very little discussion of media reports of families moving across Canada and to the US seeking autism treatment for their autistic children.

Autism Canada, the newly formed entity rising from the merger of the Autism Canada Foundation and Autism Society Canada, and Autism Speaks will not advocate for Medicare coverage of autism disorders. They will not risk their charitable status and funding for their organizations. With a federal election looming it is time for serious national autism advocates to speak up and advocate for autism treatment coverage under Medicare.

Stephen Harper and Mike Lake, a well known Conservative MP who appears to be a good guy and a great father of an autistic son have done nothing to help autistic children across Canada not one damn thing. They both say, correctly, that health care is within provincial constitutional jurisdiction and they are right. What they both ignore is the concept of co-operative federalism a concept which once existed in Canada and can be restored with a new government in place.

Medicare itself came into existence in this country via federal provincial cooperation and it can be amended to include autism treatment coverage by the same mode. We need medicare for autism and we need it NOW!.

U of Washington news: Early Start Denver Model Intervention Improves Long-term Outcomes for Children with Autism

2015-06-09T21:16:00.001-03:00

Early intervention improves long-term outcomes for children with autism

Early intervention for toddlers with autism spectrum disorder helps improve their intellectual ability and reduces autism symptoms years after originally getting treatment, a new study shows. The study is the first in more than 20 years to look at long-term outcomes after early intensive autism intervention. The therapy began when children were 18 to 30 months of age and involved therapists and parents working with the toddlers in their homes for more than 15 hours each week for two years. The study will appear in the July issue of the Journal of the American Academy of Child and Adolescent Psychiatry and is published early online.

"When you intervene early in a child's life, you can make a big difference," said lead author Annette Estes, director of the University of Washington Autism Center. "We hope this translates to a higher quality of life for people with autism spectrum disorder." The therapy, known as the Early Start Denver Model, or ESDM for short, was designed to promote social and communication skills and learning. The research team found that two years after completing the intervention, children maintained gains in overall intellectual ability and language and showed new areas of progress in reduced autism symptoms.

This type of intervention has been shown to help children with autism, but it hadn't been shown to work with very young children over a longer timescale until now. These results make the case for autism-specific, one-on-one intervention to begin as soon as autism symptoms emerge, which for many children is before 30 months of age, Estes said. "This is really important," she said. "This is the kind of evidence that is needed to support effective intervention policies for children with autism, whether it's insurance coverage or state support for early autism intervention."

The researchers studied two groups of young children with autism – the first received community intervention as usual for two years, which was a mix of what was available in the community such as speech therapy and developmental preschool. The second group received ESDM, which addresses a comprehensive set of goals, is delivered one-on-one in the home, and incorporates parent coaching and parent-delivered intervention with the child. This approach is designed to enhance a child's motivation and follows each child's interests in playing with toys and engaging in fun activities, songs and basic daily routines.

After two years of intensive intervention, children in the ESDM group showed a significantly greater increase in IQ, adaptive functioning, communication and other measures than did the comparison group. "These findings indicate that children who had received the ESDM earlier in their lives continued to progress well with significantly less treatment than the comparison children received," said co-author Sally J. Rogers, a University of California, Davis professor of psychiatry and co-creator of the Early Start Denver Model intervention. It was surprising to researchers that two years after the early intervention ended, children who received the one-on-one care saw their autism symptoms reduce further, while children who had participated in community intervention had no overall reduction. This kind of treatment is important for the well-being of children with autism, but it's also a good idea economically, Estes added. "People who are better able to communicate, care for themselves and participate in the workforce at greater levels will need less financial support in their lives," she said.

Other co-authors are Jeffrey Munson and Jessica Greenson with the UW Autism Center; Jamie Winter at Weill-Cornell Medical College; and Geraldine Dawson at Duke University.

This research was funded by the National Institutes of Health, the National Institute of Mental Health, the Autism Center of Excellence and the Autism Speaks foundation.

###

For more information, contact Estes at estesa@uw.edu or 206-685-8059. Grant numbers: Autism Center of Excellence (MH81757); Autism Speaks foundation (1720).

Canada Needa a Real National Autism Strategy: Exhibit #1 Saskatchewan

2015-06-09T08:49:00.004-03:00

Saskatchewan is Exhibit #1 In the Case for a REAL National Autism Strategy

Canada has long needed a REAL National Autism Strategy, one which includes coverage of autism in medicare to ensure that children with autism disorders received treatment for their autism disorders regardelss of which province their parents live in. One of the most glaring examples of the need for national autism medical coverage is in the province I once called Canada's Autism Wasteland province. Since that commentary on September 2, 2007 little progress appears to have been made judging by the Global story by Amber Rockliffe: Saskatchewan families moving due to lack of autism funding. Rockliffe reports of Saskachewan families leaving the province to find treatment for their children's autism disorders; treatment which is not available because of long wait lists and is not usually delivered in sufficient hours to make a substantial difference in treating their children's autism.

One of those families that has already made the move is the family of Sheri Radoux:

“Sheri Radoux, has moved south of the U.S. border to Minnesota. “I think the services in Saskatchewan are probably the worst, or one of the worst in Canada, “said Radoux. “We moved down to Minnesota and we got full-time therapy for all our children, paid and funded by the state.”

The Rockliffe report goes on to indicate that Saskatchewan spends half, approximately $7.5 million annually, compared to approximately $15 million, that Manitoba, with a similar population, spends annually on autism services.

Families leaving provinces, including the province many would consider the birthplace of medicare in Canada, to seek a better life for their autistic children in jurisdictions provincial and American where a greater value is placed on the lives and futures of autistic children.

Yes, Canada needs a REAL National Autism Strategy.

Autism, Seizures, Meltdown, Recovery:What a Difference a Day Makes

2015-06-05T17:54:00.001-03:00

A day can make a big difference in my son's world of severe autism disorder, intellectual disability and epileptic seizures. Yesterday as I pulled up to his school to pick him up at the end of the day I could hear his voice inside the school and I knew things were not going well. He had been undergoing a very serious meltdown and I won't go into all the details. Today though, 24 hours later I pulled up to the same location and before I turned the corner I could see him at the basketball net. I stopped pulled my camera out and completed the turn. Conor was having fun outdoors, shooting the basketball and he was happy. And Dad is very happy as I type these words and post these pictures of my happy Conor.