My 21 year old son Conor is a joy in the lives of his family , friends and those who have met him in NB schools, Fredericton stores and generally. Conor is severely autistic with intellectual disability and epilepsy (frequent tonic clonic seizures). This places him squarely in the midst of the subgroup on the Autism Spectrum Disorder whose life expectancy is shorter by 30 years than the general population.
The NB government has ignored those realities for decades and has refused, since 2010, expert advice to build a centralized expert autism center AND network which would address increase the chance for autistic adults to live longer, happier lives.
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.
(Bold Highlighting Added - HLD)
People with autism die 16 years earlier on average, says charity BMJ 2016;352:i1615
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
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
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."
(Bold highlighting added - HLD)
"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
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
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."
Paul McDonnell Ph.D. is NB's foremost autism expert. His recommendations via the CBC in 2010 were repeated during a meeting with Minister of Family and Community Services/Social Development Cathy Rogers not long after the Gallant government dame to power. Dr. McDonnell enlarged on his media comments with a written presentation and was accompanied by parent advocates, including me. Minister Rogers brought some key advisers with her and I was personally optimistic. Unfortunately Minister Rogers was moved in a cabinet shuffle and Minister Horsman transferred from Justice. Minister Horsman has shown no inclination to take adult autism issues seriously and is content with exiling NB autistic adults to the Restigouche Regional Psychiatric Hospital on our northern border far from most families and far from the autism expertise developed in Fredericton a central location closer to most families.
As stated above Social Development Minister Horsman is happy with autistic adults being sent to the Restigouche Hospital on NB's Northern Border far from most families in southern and central NB. Campbellton itself is a small city with a shrinking population. When prominent Liberal Bernard Richard completed his mental health review he expressed thinly veiled anger at the current Gallant Liberal government for its decision to place a mental health center in the Restigouche Hospital in Campbellton. He was joined in criticizing that decision by fellow prominent Liberal and former cabinet minister Michael Murphy QC:
Putting mental health unit in Campbellton is 'worst' decision former youth advocate has seen in a while
By Matthew Bingley, CBC News Posted: May 11, 2015 7:50 AM AT Last Updated: May 11, 2015 12:26 PM AT
"In January, Richard and a colleague canvassed mental health professionals to see what they wanted for a new facility.They made recommendations to the government to build the facility in Moncton where access to two hospitals, in both languages would be available.They also argued that an urban location would have more luck producing specialized services and luring doctors.
Michael Murphy also chides choice
Former Liberal health minister Michael Murphy took to Twitter Monday to join those panning the choice of Campbellton. After Richard went public with his concerns about the choice, Murphy joined in the chorus of opposition.A mental health treatment centre for youth has been discussed in New Brunswick for more than a decade and in a rare Saturday news conference, the province announced the project would proceed adjacent to the Campbellton Regional Hospital.
"Bernard Richard...appalled by location of new centre. I agree," tweeted Murphy.
Murphy blamed the decision on Liberal party politics and pointed to his former cabinet colleague Donald Arseneault as the likely source of the decision. Arseneault is the current minister of energy and mines and represents the riding of Campbellton-Dalhousie in the legislature. Arseneault made the actual announcement in Campbellton on Saturday, rather than Health Minister Victor Boudreau.
"Power of Donald Arseneault is evident by this," tweeted Murphy. "The location away from family for most young patients may only aggravate the condition. But this government is intensely political."
(Highlighting added - HLD)
Autistic adults have drastically shortened life expectancy - 16 to 30 years shorter depending on their location on the autism spectrum. Those expectations and the quality of their lives could be expanded dramatically if an autism center based in Fredericton near the autism expertise developed over the last 15-20 years could be built as a center for an autism network of group homes which together could provide the long term residential care and treatment needed for persons with moderate to severe autism disorders and related disorders. Unfortunately as prominent Liberals Bernard Richard and Mike Murphy have pointed out the current Gallant government is motivated by politics not by concerns for people like NB's adult autistic population with their shortened life expectancy.
I have to continue to hope, and to advocate, for a different approach to adult autism care in NB. My son has a shortened life expectancy because of his condition and because our government ignores his reality a reality shared by many NBers with autism disorders. It doesn't have to be this way. Professor McDonnell has the professional expertise to point to a better future and he has done so.
I also rely on my expertise as a dedicated father who has seen my son, as his mother and I raised him, struggle with his serious challenges: severe autism, intellectual disability, seizures, self injurious behaviours. I have also though seen the joy he has experienced in life; a joy which he shares with all who know him. I post pictures of my wonderful son again following this commentary and hope that before too long NB governments start to address the challenges my son will face when I can no longer, through age or death, provide the care he needs; the care that will not permit his life, and his joy, to be drastically shortened. I know my son can have a happy life, a healthy life. I have helped him and experienced his successes and joys. I will continue to do so and will continue to hope for a responsible government to take charge and develop the adult autism center and network that has been needed for so long.
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