Conor After Another Seizure

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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!

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!

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

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.

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 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

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

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.

Autism, Intellectual Disability and Seizures, When Together, Constitute ONE DISORDER

In the picture above, taken 3 years ago my son erupted in sudden self injurious behavior smashing himself violently in the head  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 and Impulse Control" I commented on a variation of such sudden violent activity when moments of joyful interaction turn harmful for Mom or Dad.   Seven years after I speculated that my son's sudden impulses of violence towards himself or us were a reflection of seizure activities in his brain he has suffered a number of obvious tonic-clonic or gran mal seizures and he has been on a variety of seizure medications for almost 3 years.  

I also  know now that my belief in an Autism Knowledge Revolution was premature ... very, very premature.  Despite much higher rates of epileptic seizures among persons with autism than among the general population ....  as much as 30% compared to as little as 1% based on sources I have read ...  it still does not seemed to have dawned on the autism research community that "co-morbidity: which seems to imply "coincidence" to this humble layperson are aspects of one neurological disorder not two co-morbid disorders at least for those who have features of both and that the presence both of these alleged "co-morbidities" is even greater among those who, like my son, also suffer from intellectual disability.

This humble layperson strongly recommends and begs the "autism research community" to re-focus its priorities and shift away from trivial, puerile aspects of autism, stop calling it a condition, stop equating autistic with savant and start focusing more on finding causes, treatments and yes, cures, for the debilitating trifecta of autism, intellectual disability and epilepsy which this humble Dad would like to inform you is in fact ONE DISORDER not THREE separate co-morbid conditions.  I realize you can snicker and snort as professionals in the field and dismiss my comments but if you do so you are dismissing the 24/7 observations, over a period of 19+ years  of a person who loves the subject being studied and so pays close attention ... a parent. Get serious about autism, intellectual disability and epilepsy or quit pretending you care.

Facing Autism in New Brunswick

Autism News and Opinion

SATURDAY, JANUARY 19, 2008

Autism Disorder and Impulse Control

There are many puzzling features of autism. Hence the puzzle symbol for autism. Some of the mystery is being removed as our daily news brings us reports of new studies mapping the genetic and biological basis of autism. But even those areas are just beginning to be explored and while we are living through an Autism Knowledge Revolution there is much which remains unexplained and mysterious. Impulse control is one of those unexplained mysteries.

Even 10 years after Conor was diagnosed with Autism Disorder I am still startled by the impulses which suddenly seize Conor, and I mean seize literally, turning gentle acts of affection into potentially injurious and even dangerous acts of violence. Conor is very affectionate, tactile and observant. He likes to place his hands on either side of Dad's scruffy bearded face and study my face. But some times, suddenly, his hands dig painfully into my face. Sometimes he will grab my throat. Conor has also suddenly grabbed his mother by the hair and snapped her head and neck. Walking arm in arm downtown Fredericton, as we often do on weekends, he will occasionally grab by arm forcefully.

We have never thought for even a second that Conor intentionally tries to injure. I do not believe he has control during these instances. An impulse appears to overcome him suddenly and often is not preceded by any apparent triggering environmental stimuli. Conor simply appears physically seized by a powerful impulse.

I do not know what causes these seizure like impulses. I realize that my description of these events may sound like they are epileptic seizures and Conor's pediatrician may well confirm that lay person's guess. I know that there are many articles commenting on comorbidity of autism and epilepsy. Putting a new name on them may well be helpful in leading to other literature and understanding but I suspect that the behavior itself when it happens will always be startling and mysterious.

New Brunswick and Ontario Fail to Address Needs of Adults with Autism Disorders and their Families

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 many with autism disorders who require treatment and permanent residential care.  

New Brunswick, which made substantial gains in early intervention and some gains in our schools, has spent money sending severely autistic adults out of province to Maine with some being housed permanently at the psychiatric hospital in Campbellton far from most families and some in general hospital wards.  In 2010 NB  Clinical Psychologist, Professor Emeritus and autism expert Paul McDonnell recommended a network system with a center to provide treatment for adults and permanent residential care for those with severe, 24/7 care requirements.  The center would provide professional expertise and oversight that could be accessed by autism facilities and assisted living arrangements in communities around the province. The McDonnell network was endorsed in the NDP platform in the 2014 election but has not gained ground in the consciousness of the NB government which continues to house autistic adults in hospitals in New Brunswick and ship our autistic adults elsewhere.

In Ontario CBC reports in  Autistic adult daughter leaves mom exhausted with nowhere to turn on the lack of support for an exhausted mother of an adult autistic daughter with nowhere to go when she soon ages out of the education system. Group homes have long waiting lists and services are prohibitively expensive.  The problem, as reported by CBC, is prevalent across Canada as governments have failed to address the consequences of the "close the institutions" movement that did result in closing institutions with no adequate replacements:

"Groups that advocate for the disabled said the entire country was unprepared for the increasing number of disabled adults needing community care, since institutions closed years ago.

They told Go Public that governments did not take into account the stress that closing institutions would create on working family members forced to take over.

"It's not sustainable. And so we need a new social contract on this. Already … 25 per cent of Canadians are now providing care to a family member or close friend," said Michael Bach, executive vice-president of the Canadian Association for Community Living, citing federal statistics."

In terms of actual gains New Brunswick, despite early autism success and the demonstrated need for autism services, has operated with a mess of arrangements justified under cliches of community and inclusion without exploring alternative, modern systemic answers that could provide decent treatment, care and lives for severely autistic NB adults.  The fundamental principles advanced by Paul McDonnell in 2010 are similar to what is beginning to happen in British Columbia as described on a CBC article: $28M autism centre supporting families breaks ground in Richmond, B.C.    The description on the CBC site indicates that the network would provide comprehensive support to children, adults and families affected by autism with a center and facilities around the province although it does not indicate that residential care for those with severe autism will be provided.

New Brunswick has made substantial gains in Early Intervention and significant though less comprehensive gains in our schools.  The biggest obstacle to development of a comprehensive adul autism care plan in NB has been the reliance on community and autism cliches and close ties between government and community charities which fight against any attempt to develop evidence based exceptions to their philosophical "community" and "inclusion" beliefs. 

In NB governments and "community" charities simply ignore and refuse to acknowledge the severely autistic adults living in the psychiatric hospital in Campbellton, general hospital wards or group homes lacking autism trained staff and professional oversight.  They refuse to acknowledge that the specialized care and treatment needed to address adult autism needs does not exist in the communities. They simply refuse to acknowledge that an expertise based center for adult autism treatment and for those most severely affected by autism disorder .. permanent residential care .. is needed. 

Autistic adults in NB, which now includes my son Conor, have been, and will be, harmed by the false belief that magical communities solve all problems. They don't and autistic adults pay the price in NB as they do in Ontario.