It Appears Inclusive Community New Brunswick Will Continue to Exile Adults with Severe Autism Far From Families and Autism Expertise

Photo of my son Conor submitted to the Aquinian for an article by 

then Aquinian journalism student Karissa Donkin in 2011. No progress in residential care and treatment for severely autistic adults in New Brunswick has been made since that article or since Conor's autism diagnosis 19 years ago at age 2. 

One of the people interviewed by Karissa Donkin was Mark Barbour who was then the a spokeslperson for the Department of Social Development as it was then called. He gave a specific acknowledgement of the lack of adequate long term care and treatment for adults severely restricted by autism disorders. He also  stated that the PNB wanted to build an autism specific  facility to address these needs:

New Brunswick provides care both in a patient’s home and in residential facilities for more than 6,250 adults under 65 with disabilities, including autism, says Department of Social Development spokesman Mark Barbour.

But Barbour admits the province needs to do more to help autistic adults.

“There is a need for more specialized services for autistic youth and adults, whose behaviours or conditions are severely impaired.

“These individuals require services and supports designed to specifically meet their high care needs.”

The province wants to build an autism residential facility, which would provide permanent care for severely autistic adults who can’t live on their own, Barbour said.

Not only is the current system not comprehensive enough for adults with varying degrees of autism, but it’s also expensive, says child psychologist and autism expert Dr. Paul McDonnell.

Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or out of province."

Today despite NB's, in particular Fredericton's, success in establishing an internationally recognized early autism intervention program, the province has not lifted a finger to address the needs of severely autistic adults in need of long term residential care and treatment.  Adults with autism are still exiled to the Restigouche Psychiatric Hospital in Campbellton, on NB's Northern Border 4-6 hours drive from family members in central and south NB and 4 hours drive from the autism expertise that has been developing in Fredericton during the last 2 decades. 

In an October 6 2016 interview by Jeremey Keefe of Global news the PNB released a statement which makes it appear they are planning to address the needs of adults with autism including adults severely affected by autism requiring long term residential care and treatment:

Advocate says services for adults with autism lacking in N.B.

"Due to the severity of his son’s condition, Harold has to look after Connor around the clock, save for the time he spends in school.

For now it’s manageable, but Harold says knows it isn’t sustainable in the long-term and eventually Connor will require assisted care.

But the lack of a facility where he and his son can call home could make that phase of his life more difficult than need be, and he doesn’t think they’re the only ones.

“If I were to keel over as we speak, they would be sending him to the Restigouche psychiatric hospital in Cambellton, which is obviously a fair distance away,” Harold said.

“And it’s far away from most of the population and most of the families in New Brunswick and it also doesn’t have the expertise we have right here in Fredericton.”

“What we’d like is a rational and humane adult care treatment centre and network … based right here in Fredericton,” explained Doherty.

In a statement, the provincial government said that they recognize “the need to provide high quality services to our province’s families and individuals living with autism.”

The statement also mentioned that the Department of Social Development in collaboration with the Department of Health and in consultation with families of adults on the high end of the autism spectrum are currently developing a diverse approach to autism that would meet the needs of all those affected by the disorder; from those on the lower end of the spectrum to those at the higher end as well as parents and caregivers.

The Global news story makes it clear that the information from the Department of Social Development was provided in a statement and was presumably carefully considered before release. The  Department expressly states that it is consulting  with families of adults on the high end of the spectrum with no mention of  families with adults on the low or severe end of the spectrum.  It appears that adults with severe autism requiring the autism expertise in Fredericton and the long term residential care and treatment of an adult autism centre will continue to be exiled to Campbellton far, far from their families. 

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.