Today is Conor's Birthday No. 22 and Today is Family Day for MOST New Brunswick Families: What Does The Future Hold?

Today is Conor's 22nd Birthday and we started early with some yummy Birthday cake.  Conor was very happy to show us how to eat Birthday Cake.  Below Conor's birthday cake munching photo is a picture of Conor with his Mom a few days after his actual birthday followed by a picture when he was just 3 days old with his wonderful brother Brandon and his Dad looking slightly younger than when I looked in the mirror this morning.  The last picture shows Conor with his Dad on his second birthday, the day before we received his autism disorder diagnosis. 

We have celebrated every day of Conor's wonderful life and we have many, many happy, smiling Conor pictures to prove it. But I have to pay attention and continue to try and bring  public attention to the harsh realities of autism disorders including the premature mortality by as much as 30 years for those with autism and intellectual disability established in solid studies including the recent Swedish study reported on by the UK Autistica charity in its report Personal tragedies, public crisis: The urgent need for a national response to early death in autism. I am NOT speaking for those adults with higher functioning levels who can speak for themselves.  I AM speaking for my son who will face a harsh life after his Dad, with whom he lives can no longer be of help either through old age or by meeting that inevitable "train at the end of the tunnel".

Youths and adults with autism have, for many years, been sent to general hospital wards, to facilities outside of Canada and to a Regional Psychiatric Hospital in Campbellton a small town that straddles the NB Quebec boundary on New Brunswick's Northern border.  New Brunswick intentionally sends autistic adults to our Northern Border for political reasons to help elect politicians like lobbyist and former Liberal Party power figure Donald Arseneault.  NB's population to the extent that it is still growing is growing in the South in Fredericton, SJ and Moncton.  Fredericton which is the most centrally located city in NB is also the home of autism expertise in NB with the Early Autism program at UNB-CEL and the Stan Cassidy autism team which provides autism services to age 16.

In 2010 UNB Professor Emeritus (Psychology) Paul McDonnell  Ph. D. was interviewed on CBC and pointed out the pressing need for an autism centre for those with autism who require long term residential care and treatment which could also provide training for autism group homes around the province.   That expert advice, backed by the parent advocates who fought successfully for the establishment of the UNB-CEL program, for the early autism program, for autism trained Teacher Aides and for the reversal of the decision to close the Stan Cassidy autism team, has been ignored by governments every since.  

The rationalizations for refusing to provide the decent, humane autism network recommended long ago by Prof. McDonnell vary from misguided, non evidence based philosophy of incessantly repeating "community, inclusion" day after day, year after year, while ignoring the evidence of autistic adults being sent to institutions far from their families to the cowardice and corruption of the current government which sends people like my son to Campbellton for purely political reasons causing them immeasurable harm.

Prominent Liberals Bernard Richard and Michael Murphy QC identified the liberal government decision to establish a mental health centre in Campbellton as one of the worst decisions they had ever seen.  Murphy a former Health Minister, a former Justice Minister,  clearly stated that the Liberal government decisions are politically based and that it illustrated Donald Arseneault's influence within the Liberal government. 

I submit that the refusal to establish the autism centre and network called for by Professor MacDonnell and parent autism advocates many years ago, while sending severely autistic adults to Campbellton on our northern border for purely political reasons is corrupt, cruel and cowardly.

I will continue to fight the corrupt cowards of any party that continue to banish autistic adults like my son to Campbellton and general hospital wards when they know that solutions exist as recommended by Professor MacDonnell 8 years ago and as advocated for many parents for many years prior thereto.  

I will also continue to find joy in my son, and to try bring as much joy to my son's life, as I can for as long as I can. 

NB and Canada Must Wake Up and Confront the Autism Premature Mortality Crisis

"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."

 Autistica: Personal tragedies, public crisis, page 3, executive summary.

As set out in the Autistica Report  the recent very large Swedish study adds to a well documentef but largely ignored reality: There is a shocking health crisis which society must address: the early deaths of persons with autism disorders.

NB and Canada have given no indications that they are aware of this crisis let alone how to deal with it.  It is time we all woke up in this country and come to grips with this shocking reality.

Autistica is a leading UK autism research charity which both funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions.

From the Executive Summary, Page 3:

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. 

Research studies across the world have confirmed that autistic people are at an increased risk of early death. A large study from Sweden in late 2015 made this case stronger than ever by analysing a very large, high quality dataset to compare the general population, autistic people, and people with both autism and a learning disability. 

Two findings relative to the general population are particularly striking: 

Yet there is still very limited awareness and understanding of the scale of premature mortality for the 700,000 autistic people in the UK and hence very little action to date to reduce it. This hidden crisis demands a national response. 

The large Swedish study as reported by Autistica points out that there are a number of reasons for the shocking early mortality rates of autistic adults but indicates two factors which are particularly significant causes of early death: epilepsy among persons with autism and learning disabilities and suicide among those with autism without a learning disability as stated in the image above:

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 epilepsy 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.

Suicide in autism 

After heart disease, suicide is now the leading cause of early death in adults with autism and no learning disability. Indeed, the recent Swedish study found that adults with autism and no additional learning disability are over 9 times more likely (relative to a general population) to commit suicide.3

The recent report from the Mental Health Taskforce identified autistic people as at higher risk of mental health problems.15 Indeed, research indicates that 70% of autistic individuals have one mental health disorder such as anxiety or depression, and 40% have at least two mental health problems.4 When these issues appear alongside autism, mental health difficulties can go undiagnosed and untreated. 

Multiple studies suggest that between 30% and 50% of autistic people have considered committing suicide.16,17, 18 One study found that 14% of autistic children experience suicidal thoughts compared to 0.5% of typically developing children.19 Another recent study of adults with Asperger syndrome found that two-thirds of participants had lifetime experience of suicidal thoughts and a third of participants had planned or attempted suicide.20 

While there are certainly examples of good practice in some locations, the comparative statistics indicate that the majority of mental health and related services are not sufficiently skilled to meet the needs of autistic people with an additional mental health problem, including suicidal thoughts. Numerous personal accounts illustrate how this impacts on the lives of autistic individuals and those who love them. 21

Deadly Discrimination Against Adults With Autism Disorders Continues In Ontario (and New Brunswick)

People with autism tend to die decades younger than the rest of the population, and more needs doing to understand the problem’s causes and to find potential solutions, says a new report from the charity Autistica.

Autistica’s report,1 drawing on recently published research in Sweden, said that people with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.

Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties.

People with autism die 16 years earlier on average, says charity BMJ 2016;352:i1615

Deadly Discrimination against adults with autism continues in Ontario  despite a new declaration of full coverage for autism for children and youth to 18.   Discrimination against adults with autism is done by governments pushing 2 misrepresentations that are also advanced in the public media by some specific interest groups:

1. By pretending that autism is NOT a life shortening medical disorder.

2. By pretending that autism is a childhood condition that does not extend into adulthood.

With these 2 falsehoods already entrenched in the public imagination it is very easy for governments to ignore the realities that autism is in fact a debilitating medical disorder that shortens life expectancy by 16-30 years for those with high functioning autism (16 years) and those at the lower end of the autism spectrum (30 years).  Policies aimed at providing the adult care required for so many with autism are simply non existent in Ontario, New Brunswick and most of Canada.

Deadly Discrimination against autistic adults also continues  in NB.  NB has been recognized internationally as a leader in early autism intervention.  We have also seen education aides specifically trained in autism.  But, as in Ontario autistic adults are simply ignored by our provincial governments. As in Ontario autistic adults can expect shortened life expectancy shortened by 16 to 30 years.   Discrimination against autistic adults in NB is deadly.

It is impossible to say whether those with shortened life expectancy could be restored to the general average with proper care, education and treatment throughout adulthood.  What is certain is that shortened life expectancy will continue if nothing is done to address the challenges of adults with autism.

At the high functioning end of the autism spectrum depression and resulting suicides are a primary cause of the reduced life expectancy.  At the lower end the epilepsy and seizures that are present in a large percentage of those with autism and cognitive disability are a primary cause.

What could make a difference in either case? Access to counselling and support and intensive residential care and treatment of autism and epilepsy would certainly improve if not totally restore to general population levels the life expectancy of persons with autism disorders in NB, in Ontario, and elsewhere in Canada.