Severe Autism Disorder Equals Life Minus 30

No mention of autism disorders' hidden crisis during light it up blue awareness month.

Autistica: Personal Tragedies, Public Crisis 

FOOL US ONCE ... SHAME ON YOU PM TRUDEAU! MEDICARE COVERAGE FOR AUTISM NOW!

SHAME ON YOU PM TRUDEAU!

The Liberal Party of Canada passed, with strong support, a resolution calling for Medicare Coverage for Autism in 2016 but the Liberal PM of Canada Justin Trudeau refused to act on it and instead spends $20 million dollars for 2 "autism web sites". Autism advocates and political supporters have fought for medicare coverage for autism and a REAL National Autism Strategy since 2003 led by MP's Andy Scott, Peter Stoffer and Shawn Murphy. Then in Winnipeg 2016 it looked like Medicare coverage for autism would soon happen when the Liberal Party of Canada, which forms the Government of Canada met for a national convention and passed a solid Medicare Cover for Treatment of Autism Resolution E-03. Trudeau fooled us though as he obviously had no intention of acting on his party's resolution.

New Brunswick's Extreme All In One Classroom Inclusion Policy Is "By Its Very Nature Discriminatory"

When he was in Grade 2 my now 22 year old son Conor would bite his hand every day while in the "Inclusive Classroom"  a badly flawed, non evidence based, education  model pushed relentlessly by Gordon Porter and his true believers in the NBACL and in government.  When he was removed from the Porter NBACL inclusive classroom and placed with his autism trained Teacher Aide in an adjacent classroom not in use  the biting stopped. It was literally like night and day. The picture above was actually taken later on when he was learning in a quieter location but a telephone rang without stop for a long period when the occupant was absent for the day.

Conor continued, until he aged out of the school system at 21, to receive his instruction in a separate learning environment while also interacting with other students in activities in the gym, swimming pool, outdoor activities like running and "adventures" like apple picking.  He also had great fun with students who interacted with him like this picture of a young lady and Conor having chalk fun and all smiles outside Leo Hayes High School. 

This accommodation of Conor's needs did not result from an inclusive education model. It resulted from filing of Education Act Appeal and a Human Rights Complaint.  With accommodation for his autism  learning challenges outside the "inclusive classroom" Conor loved school. He has missed it greatly since aging out. 

Unfortunately for some students with severe autism and other learning challenges they are not always accommodated even if an alternative learning placement would help them receive the education they are entitled to as determined by the Supreme Court of Canada in the Moore case.   The problem with Porter and his true believers is they refuse to see evidence that contradicts their philosophical belief that all students benefit from being placed in a regular classroom.  All students do not benefit, my autistic son with intellectual challenges son did not benefit, from being placed in a regular classroom where he was overwhelmed.  Unlike Gordon Porter and his NBACL and government followers I could not ignore the evidence when my son came home each day with self inflicted bite marks on his hands.

In the picture above Gordon Porter was in Newfoundland promoting his extreme, inhumane and discriminatory all in one classroom inclusion beliefs:

CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world. The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday. Porter, who is also the editor of the Inclusive Education Canada website inclusiveeducation.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative. 

 Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter."   
                                                                                 

- Inclusion in the classroom ‘simple,’ says educator, Western Star, Diane Crocker, April 12,  2012

Yude Henteleff QC provided a full and well informed critique of the "full inclusion model" in 2004:

Yude Henteleff QC is a distinguished lawyer and human rights expert whose detailed resume would represent a life time of accomplishment for several individuals. He is a founding member of a prominent law firm, has been legal counsel for Autism and Learning Disability Associations, been active as a mediator in human rights disputes, served on the Canadian Human Rights Commission and named to the Order of Canada. In November, 2004 he presented a paper at the Canadian Association for Community Living National Summit on Inclusive Education, Ottawa in which he asked “why full inclusion is being advanced in certain areas as the only way to effectively meet the diverse needs of all children with special needs.” 

Mr. Henteleff provided a number of reasons for the emphasis on full classroom inclusion – including government cost consciousness. Full classroom inclusion is cheaper than providing a continuum of choices to accommodate all the needs of individual students with various disabilities. 

Mr. Henteleff also reviewed Supreme Court of Canada decisions in Law, Granovsky, Mercier  and Eaton and concluded that “Imposing a standard, namely that the inclusive classroom meets all needs, is a perception not based on reality and is stereotypical. In other words, the standard takes the position that one environment meets the needs of all special needs children. By its very nature, such a standard is discriminatory,”

– Henteleff, Y. (2004). The fully inclusive classroom is only one of the right ways to meet the best interests of the special needs child. Paper presented at the CACL National Summit on

Inclusive Education, Ottawa, Ontario.

NB Autism Expert Paul McDonnell on the Need for an Adult Autism Residential Care and Treatment Network

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

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

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected. Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a 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.

Autism parents advocated successfully  for the early autism services currently provided to autistic children in New Brunswick. We also advocated successfully for autism trained teacher aides and research teachers and for the reversal of the decision to close the Stan Cassidy Centre autism team which provides consultation services to age 16.  We also argued for many years, including by a written submission in 2008, for adult autism services. 

In 2010 we were joined in our adult autism advocacy efforts by Professor Emeritus (Psychology) Paul McDonnell who was interviewed by CBC journalist Dan Mchardie and articulated clearly the need for an autism network of group homes with autism trained staff with a centre in Fredericton to provide oversight to the services provided in the homes which would also provide permanent residential care and treatment including continuing education for adults with the most severe autism related challenges.  

In 2015, with input from me and from fellow parent autism advocate Cynthia Bartlett, Mr. MacDonnell elaborated on the network proposal in a submission presented with Cynthia and I  also participating, at a meeting with then Minister of Social Development Cathy Rogers. While things stalled after that it seems clear after a recent meeting with myself and my severely autistic adult son Conor and  Minister of Families and Children . Stephen Horsman, with 3 department representatives, in attendance  that the Minister is working to address the needs of autistic adults in NB.  Hopefully he will consider carefully the statements by Paul McDonnell in 2010 and the joint submission he made with Cynthia Bartlett and myself in 2015.  

The concept of a hierarchy of needs has long been discussed in humane societies.  The spectrum of adults with autism includes many with very intense residential care and treatment needs. Hopefully Minister Horsman will address those needs with the adult autism centre and network  proposed by Paul McDonnell and parent autism advocates for so many years.

Seizures and Early Mortality - Some Autism Reality You Might Not Have Heard About at the WAAD Light It Up Blue Parties

Self injurious behavior is an aspect that is generally know even if it is not discussed at Light It Up Blue events on World Autism "Awareness" Day each April 2.  There is a tendency to believe though that all self injurious behavior is a purely behavioral response to external stimuli including sensory stimuli.  While that is often the case it is not always the case.  Self injurious behavior can be a reaction to internal pain or discomfort as shown in the pictures of my son Conor taken several years ago.  These pictures were taken early on a mild Saturday morning on the playground of the grade school he had attended years earlier.  There was no one else around, it was calm and quiet and Conor was happy on the swing. Suddenly his face took on a pained expression and he began hitting his head. I suspected these events might have been a seizure of some kind and his pediatrician said they might be.  His seizures, and epilepsy, were later conformed by a neurologist and Conor has had several full scale grand mal or tonic clonic seizures since then and a variety of other seizure activities. Pain is a feature of many of these seizures. 

As it turns out there is ample research pointing out that epilepsy is common on the autism spectrum; about 15 times more common than among the general population.  While Canadian autism charities generally fail to actually create any significant autism awareness the same is not true of the UK autism research charity Autistica which specifically reports some of the harsh realities parents of severely autistic children see and research confirms. In Personal Tragedies, Public Crisis the premature death rates of persons with autism are reported.  Early  mortality rates are high across the autism spectrum with most dying 18 years earlier than persons in the general population.  People like my wonderful son who has autism, intellectual disability and epilepsy die on average 30 years sooner than most in the general population. Please stop and think about that fact  ... 30 years sooner.

I do not show up for blue light parties. For those who do, if you have a young child with autism please know that epilepsy does not always show up for those with autism until they are in their puberty years as was the case with my son Conor.  If you see your child in pleasant conditions suddenly engage in self injury for no obvious reason.  It might be, as it turned out to be for my son. the onset of epileptic seizures. There might also be other pain inducing internal causes.  Either way be aware, be truly aware in a meaningful sense, and get your child to your family doctor for consultation. 

New Brunswick's No. 1 Autism Need - Addressing Our Autism Early Mortality Crisis

Many families and autistic individuals have raised concerns over early deaths in autistic people. Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time. Personal Tragedies, Public Crisis, Autistica Executive Summary

We have witnessed another Blue Light Festival, also known as World Autism Awareness Day, on April 2 which, as usual, generates very little autism awareness. In fact the feel good stories conceal the reality of the serioius challenges facing persons with autism, their families and caregivers. There has been very little discussion of NB autism needs and in particular of NB's invisible autistic adults those living with autism, intellectual disability and epilepsy a combination of conditions which is common on the autism spectrum and which is characterized by a drastically reduced life expectancy 30 years less than persons in the general population. 

Thanks to the UK autism charity Autistica no one should now be ignorant about the challenge facing adults with autismm ID and epilepsy. The Autistica Report Personal Tragedies, Public Crisis reported the results of a high quality Swedish study that the life expectancy's of persons with autism disorder are on average 16 years less than persons in the general population with those with autism and intellectual disabillties dying 30 years before their time. The primary cause of death for those with autism without ID is depression, for those with autism and ID it is epileptic seizures.

Epilepsy in autism Between 20% and 40% of autistic people also have epilepsy and this rate increases steadily with age – in contrast to a one percent prevalence rate in the general population. 10 In the typical population, the risk of it is greatest in a child’s first year, decreasing in risk through childhood, then remaining stable and not increasing again until old age. 11,12,13 In the majority of autistic people who develop epilepsy, their seizures do not appear until their teenage years, much later than average.5,14 This suggests that the underlying triggers of epilepsy may be different in autism. Autistic adults who also have a learning disability have been found to be almost 40 times more likely to die from a neurological disorder relative to the general population – with the leading cause being epilepsy.3 Despite the very high prevalence of seizures in autistic people and the high death rate from epilepsy, there has been virtually no research to establish whether treatments used for epilepsy are safe or effective in the autistic population. More research is urgently needed into the relationship between epilepsy and autism and the impact of epilepsy over the lifespan in autistic adults. - Personal Tragedies, Public C

This father of a 22 year old son with ID and epilepsy can not celebrate his autistic disorder. Nor can I forget for even one day the harsh reality that my son's life expectancy is 30 years less than persons in the general population. I am now more than ever puzzled and surprised that the people of New Brunswick including government and health care professionals seem totally unaware of the public crisis that faces so many NB'ers with autism.  With no plan for adult autism residential care and treatment in place I can not look at shiny blue lights every April 2 and pretend that all is well.

Harold Doherty, Conor's Dad

Liberal Party Autism Election Commitments - 2006 - Commitments Today? Concern for Humane Adult Autism Residential Care and Treatment Today?

A Promise Kept 

 NB Liberal Party leader Shawn Graham signs a $2.5 Million commitment for autism services on the cast of prominent Miramichi autism advocate Lila Barry prior to the 2006 NB Election.  

Dear Premier Brian Gallant:

Prior to the 2006 Provincial election the Liberal Party led by Shawn Graham made the following
autism commitments to the Autism Society of New Brunswick:


1) Funding for existing autism therapy programs for children under the
age of 6 will continue

2) An additional 2.5 million dollars yearly have been set aside to
expand upon autism services.

3)1 million of the 2.5 million will target training 400 teacher
assisants and method and resource teachers at a training rate of 100 per
year over four years at UNB-CEL

4) remaining 1.5 million to attack specific issues as increase therapy
funding for young children, training through UNB-CEL, and

5) the development of a long term service plans for autistic adults
including residential care

6) ASNB will be a full member in the development of autism strategies.

Most of those promises were kept to a significant extent especially promises to continue funding
existing autism therapy programs for children under the age of 6, an additional 2.5 million dollars
yearly were set aside to expand upon autism services and :

training 400 teacher assistants and method and resource teachers at a training rate of 100 per
year over four years at UNB-CEL,

With those promises a solid commitment to  assistance and support for NB'ers with autism disorder  challenges was launched and made NB a recognized leader in delivery of meaningful autism treatment and care.  There was, however, one promise that was not kept, and as of today has still no commitment to being kept by yours or any other political party as NB heads toward another provincial election:

5) the development of a long term service plans for autistic adults
including residential care.

There are many flawed reasons for the failure of Liberal and Conservative governments to implement

promise #5 to develop a long term service plans for autistic adults including residential care.  It is not for lack of being informed though.  UNB Professor Emeritus Paul McDonnell was interviewed by CBC journalist Dan McHardie prior to the 2010 election and outlined

an autism network plan consisting of an autism centre that could build off the growing autism expertise available in Fredericton to develop an autism network consisting of a  centre that could provide training for autism specific group homes in communities around the province and could also provide permanent, education oriented, humane residential care and treatment for those most severely affected by autism disorder challenges. That autism network outline was elaborated on in a submission by Mr. McDonnell with contributions from me and another parent autism advocate Cynthia Bartlett.  The submission was presented by all 3 of us to then Minister of Social Development Cathy Rogers in a 2015 meeting with the Minister and several members of her department.  

The name of the Department was changed and a new Minister was appointed shortly after that meeting.  Little progress was seen on adult autism care though until Minister Horsman's department funded a 2 day presentation by the highly respected Prof. MacDuff  late in 2017 at UNB. In a recent personal meeting involving me and  my severely autistic adult 22 year old son and 3 department members Minister Horsman stated very convincingly that he has been attempting for some time to study the needs of autistic adults in NB and hoping to address those needs.  I am never easily convinced but I did leave the meeting with Minister Horsman with some hope for progress on adult autism residential care and treatment in the near future. 

It would be helpful if the Ministers of Health and adult Education could also be involved along with one other member of your government .... you the Honourable Premier of New Brunswick.  No one except omniscient, all knowing experts  can say who will win the next election this September.  Regardless of that future event's outcome I respectfully ask that you show some real interest in the need for humane, professional adult autism residential care and treatment Mr. Premier. Much of the substantial progress in early autism training, autism specific training of teacher aides and resource teachers and the decision to revive  the Stan Cassidy Centre Autism team, which had been scheduledd for closure,   happened  because the relevant Ministers took action .... and because of the direct involvement of premiers Lord and Graham.  

Please get involved in adult autism residential care and treatment Premier Gallant. It will help ensure that the necessary steps are taken to address these challenges.  That is my humble opinion as one of the parents involved in advocating for the progress we have made in autism services that have made NB a recognized leader in provisions of autism services in Canada. 

Respectfully,


Harold L Doherty
Conor's Dad  
QE II Diamond Jubilee Medal Recipient - Autism Advocacy

Today on #WAAD I celebrate my Autistic Son Conor and the Joy He Brings; I do not Celebrate his Autism Disorder

#WAAD, World Autism Awareness Day, is today. I celebrate the joy that my autistic son brings in my life every day but I don't light it up blue and celebrate autism spectrum disorder as so many do on this day. My son Conor's autism, ID and epilepsy are a very common combination on the autism spectrum and they pose serious challenges to his well being every day. Studies show persons with these combined challenges live very shortened lives ... 30 year reduced expectancy. I do not celebrate my son's medical conditions. I do celebrate the joy and happiness he brings to me, his family and so many others who have met and known him.