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 (Read more…)
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 (Read more…) . . . → Read More: Facing Autism in New Brunswick: Wow! Federal NDP Replies to My Inquiry This Morning Re Negotiations to Include ABA for Autism under Medicare
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 (Read more…) . . . → Read More: Facing Autism in New Brunswick: Join Fredericton Green Candidate Mary Lou Babineau In Signing the Medicare for Autism Now! Petition
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 (Read more…) . . . → Read More: Facing Autism in New Brunswick: Fredericton NDP Sharon Scott-Levesque Supports ABA Coverage For Autism Under A New Canada Health Act Accord
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 seriious 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 is 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 (Read more…) . . . → Read More: Facing Autism in New Brunswick: Research Review: Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?
“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 (Read more…) . . . → Read More: Facing Autism in New Brunswick: Fredericton Green Mary Lou Babineau: A Resounding YES!!! to Including Science Based ABA/IBI Autism Treatment Under Medicare
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 opposeed 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 (Read more…)
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 (Read more…)
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. (Read more…)
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 27th, 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 19th, less than four months away.” The MFAN campaign takes its name from the (Read more…) . . . → Read More: Facing Autism in New Brunswick: Medicare for Autism NOW! Campaign Kick Off Today!
In the picture above, taken 3 years ago my son erupted in sudden self injurious behavior smashing himself violently in the head a split second after he had been on the swing at his old grade school, Nashwaaksis Memorial School; a split second after he had been very smiling and happy. I captured the image because it was a series of pictures taken with an “athletic” setting on my Canon camera to capture his until then joyful, smiling activity on the swing. In the commentary below from my January 19, 2008 commentary on Facing Autism in New Brunswick, “Autism Disorder (Read more…)
Image from a CBC British Columbia article in December 2014 Reporting on Ground Breaking of Construction on the $28-million Pacific Autism Family Centre in Richmond, B.C..(Pacific Autism Family Centre)
British Columbia, Ontario and New Brunswick are 3 Canadian Provinces at different points on the adult autism care and treatment “spectrum”. British Columbia leads with the beginning of a center and network to provide adult autism resources for BC autism adults and their families. Ontario and New Brunswick, on the other hand, have no systemic, credible approach to the provision of adult autism treatment and residential care for the (Read more…) . . . → Read More: Facing Autism in New Brunswick: New Brunswick and Ontario Fail to Address Needs of Adults with Autism Disorders and their Families
Conor embraced his right to enjoy nature a couple of times today (so far) with fun walking and running in his “back yard” Fredericton’s North Riverfront Trail. He also took time to throw some rocks into the St. John River along the way and check out the neighbors, the Osprey family, as they prepared their nest for some new arrivals. It may not be an evidence based treatment for autism but getting outdoors in nature makes his Dad feel much better and I believe it helps Conor too.
. . . → Read More: Facing Autism in New Brunswick: Conor Enjoyed Nature With An Osprey Day In His "Back Yard" The North Riverfront Trail, Fredericton
Earlier today I posted to my Facebook page and to the Autism Society New Brunswick FB page the link to Tonic-clonic seizures at Epilepsy.com. I included the note that it was important for persons with autism to be aware of such seizures because of the high number of person who suffer from epileptic seizures including my autistic son. A few hours later I got a call from the Leo Hayes High School and was informed that Conor had suffered a seizure. They did not think it was Tonic-Clonic although he had fallen and lost consciousness. When I arrived he (Read more…)
My Son Conor Wore The Blue on World Autism Awareness Day I understand some of the criticisms of the day and of thinking that wearing a color in itself creates autism awareness but as long as people raise real autism awareness of the challenges of autism disorders and the related conditions from which so many suffer including self injurious behavior, intellectual disability, epilepsy and depression; that’s all I look for and it is what I try to do 365 days a year. Caring for, advocating for, fighting for my son with severe autism disorder, intellectual disability, tonic clonic (Read more…) . . . → Read More: Facing Autism in New Brunswick: Severe Autism With Intellectual Disability And Epilepsy Can Be Tough But It’s Still a Wonderful World
New Brunswick has an approach to adult autism disorder care and treatment that can most charitably be described as a Band Aid approach. There are many reasons for this Band Aid solution apart from the consistent waving of the “we are living in hard times” dismissal that usually accompanies the replies written for Ministers of Social Development by their communications employees. The reality, regardless of the reasons, is that adult autism care in New Brunswick typically involves one emergency solution after another. These emergencies have existed since before I became in autism advocacy after my 19 year old son’s (Read more…)
With the return of Spring after a tough winter will come lots of outdoor time on our trails in the beautiful City of Fredericton with Conor. .Autism, seizures, seizure meds, reactions to seizure meds and this unusually tough winter will give way to spring and the Return of the Run Jump Fly Boy:
. . . → Read More: Facing Autism in New Brunswick: Run Jump Fly Boy Will Soon Return
Huge gaps remain n New Brunswick’s adult autism residential care and treatment system. An autism specific residential care and treatment centre and autism specific group home system is needed to bridge those gaps.
HON. CATHY ROGERS Minister of Social Development HON. VICTOR BOUDREAU Minister of Health HON. BILL FRASER MLA Miramichi HON. STEPHEN HORSMAN MLA Fredericton North As an autism advocate for over 15 years in New Brunswick (and father of a 19 year old severely autistic son) I was saddened, though not at all surprised, to read the report by Samantha Magee of the Miramichi Leader of (Read more…) . . . → Read More: Facing Autism in New Brunswick: 19 Year Old Non Verbal Autistic Man Evicted From Miramichi Special Care Home Because He Is An Adult
Meeting of Senior Department of Education Officials With Gordon Porter And Other Advocates of Extreme Everyone In the Mainstream Classroom Inclusion June 20, 21, 2012Information from CANADALAND web site.
L: Yude M. Henteleff, C.M., Q.C., L.L.D. (Hon.) R: Harold L. Doherty at the Atlantic Human Rights Centre Inclusion Conference Crowne Plaza Fredericton-Lord Beaverbrook, June 14, 15, 2012 Mr. Henteleff presented, a paper advocating for a range of learning placement optionsin order to ensure meaningful inclusion: MEANINGFUL ACCESS, INCLUDING THE PROVISION OF A WIDE RANGE OF PLACEMENTS, AS AN INTEGRAL PART (Read more…) . . . → Read More: Facing Autism in New Brunswick: Larry’s Gulch Inclusive Education Review June 21, 22, 2012
Several years ago it appeared that a new paradigm for understanding autism disorders was emerging, one which would allow greater understanding of the cause, or causes, of autism. Historically, as was noted by Teresa Binstock, researchers, and those who fund autism research, took the view that autism has “gotta be genetic”. By 2010 there was hope that finally the autism researchers’ obsessive belief that autism is entirely genetic was giving way to the GxE (Gene Environment Interaction) model. With the CATS study it appeared that GxE was actually being reflected in autism studies. Since the CATS study (Read more…)
Monday, February 9, 2015 is the first International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE) scheduled to occur annually hereafter on the second Monday in February to promote epilepsy awareness around the world. Epileptic seizures are much more common among persons with an autism spectrum disorder than among the general population and parents of children with a newly diagnosed autism disorder should discuss the possibility and care implications of autism with their medical advisers. The autism and epilepsy connection is discussed on (Read more…) . . . → Read More: Facing Autism in New Brunswick: Autism Disorders and the 1st International Epilepsy Day, February 9, 2015
Canada, despite a private members motion championed by the late Fredericton MP Andy Scott and Nova Scotia MP Peter Stoffer which called for one, does not have a REAL National Autism Strategy. The failure to enact a REAL National Autism Strategy means that in some provinces very few autistic children receive intensive early ABA intervention. The private member’s bill, Bill C-304, introduced by former PEI MP Shawn Murphy, set out below was crushed by the Harper Conservatives and Quebecois MPs. Had Bill C-304 passed 9 years ago many, many more autistic Canadian children would have received early ABA (Read more…)
During the 2010 New Brunswick election Dr. McDonnell, as noted above, was interviewed by CBC on the subject of adult autism care. The interview and analysis posted on the site are no longer available online but he stated at that time (bold highlighting added by me):
Paul McDonnell, September, 2010
“Our greatest need at present is to develop services for adolescents and adults. What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with (Read more…) . . . → Read More: Facing Autism in New Brunswick: Is 2015 The Year New Brunswick Finally Addresses Serious NB Adult Autism Residential Care and Treatment Needs?
The Autism Society Canada web site was down briefly and I had hoped, notwithstanding past experience, that the ASC would have started presenting an accurate picture of autism disorders to the Canadian public and families with autism disorders. My hopes, faint as they might have been, were dashed again. ASC, on its “new” web site face, once again misrepresents autism disorders by hiding some harsher facts, in particular the fact that as much as 50% (World Health Organization) of persons with autism disorders also have an intellectual disability:
“Q: Do persons with autism always suffer from intellectual (Read more…)
Many with autism disorders also suffer from epileptic seizures and should be aware of the risk of SUDEP, Sudden Unexpected Death in Epilepsy. The following is a News Release about SUDEP the global conversation a joint effort of several epilepsy and SUDEP awareness ogranizations in the US, Canada and Australia:Families, researchers, clinicians and organisations unite to promote a global conversation on sudden death in epilepsy A global collaboration of charities, researchers and families has created a unique online knowledge resource on sudden deaths in epilepsy. This new, web-based ’Global Conversation’ combats the myth that seizures do not kill. Sudden (Read more…)