In New Brunswick adults, like my son Conor, adults with severe autism, intellectual disability (40-50% of persons with autism) and epilepsy (20-40% of persons with autism) do not share in our supposedly inclusive community. They are largely invisible, as in the images on the right of my son below, to government, politicians and civil servants. They are not seen as the wonderful human beings that are loved by family as is my son, who would benefit from frequent family contact when they can no longer be cared for 24/7 at home.
There are general group homes and individualized apartment arrangements with some supervision for those who are higher functioning. As severity increases the likelihood of life spent in the Restigouche Regional Psychiatric Hospital in Campbellton on our northern border with Quebec increases. In the past 2 persons with severe autism challenges were sent out of the country to Spurwink Maine for treatment for a number of years at $2-300,000 per person per year. Some have lived in general hospital wards.
Some of our politicians enjoy photo op walks with young autistic children and cutting the cake at events at autism community centres that provide no treatment or care. They show little interest in providing the long term, in some cases permanent, residential care and treatment facilities that adults with autism will need.
In a conversation with the new Minister of Child and Family Services, or Social Development or Families and Children or whatever they are calling their Department today (they seem to spend more time thinking up new names for their department then addressing needs of adult autistic persons in our province) he seemed to think Restigouche Psychiatric Hospital is all that is needed to fulfill their needs. He didn't seem to think that it's location many hours drive from most NB families was a big deal. In any event that was some kind of justice for those in the North who travel further south for various reasons. And in a complete confession of ignorance of autism realities particularly severe autism realities, he didn't think autism required any specific treatments or accommodations. The Minister doesn't see the challenges of severely autistic adults. For him, my son and other severely autistic adults are invisible.
As the parent of a 20 year old severely challenged autistic son and a long time public autism advocate for services such as early intervention, autism trained school aides and resource teachers and reinstatement of the Stan Cassidy autism service, I beg to differ with Minister Horsman. But he needn't accept my word on it being a mere parent who has lived with autism 24/7 for 20 years. He can review the principles espoused by NB autism expert Paul McDonnell a Professor Emeritus (Psychology) and Clinical Psychologist who articulated the need over 6 years ago for an autism network.
McDonnell, in a CBC interview and analysis over 6 years ago, stated that an autism center that could provide long term, permanent care for those with severe autism and oversight to autism specific group homes around the province was needed to address the needs of autistic adults with varying levels of severity:
NB has been developing increasing expertise in centrally located Fredericton. It is time to get it done and time to find some political leadership that will take an interest in the real challenges of autistic adults.
In a conversation with the new Minister of Child and Family Services, or Social Development or Families and Children or whatever they are calling their Department today (they seem to spend more time thinking up new names for their department then addressing needs of adult autistic persons in our province) he seemed to think Restigouche Psychiatric Hospital is all that is needed to fulfill their needs. He didn't seem to think that it's location many hours drive from most NB families was a big deal. In any event that was some kind of justice for those in the North who travel further south for various reasons. And in a complete confession of ignorance of autism realities particularly severe autism realities, he didn't think autism required any specific treatments or accommodations. The Minister doesn't see the challenges of severely autistic adults. For him, my son and other severely autistic adults are invisible.
As the parent of a 20 year old severely challenged autistic son and a long time public autism advocate for services such as early intervention, autism trained school aides and resource teachers and reinstatement of the Stan Cassidy autism service, I beg to differ with Minister Horsman. But he needn't accept my word on it being a mere parent who has lived with autism 24/7 for 20 years. He can review the principles espoused by NB autism expert Paul McDonnell a Professor Emeritus (Psychology) and Clinical Psychologist who articulated the need over 6 years ago for an autism network.
McDonnell, in a CBC interview and analysis over 6 years ago, stated that an autism center that could provide long term, permanent care for those with severe autism and oversight to autism specific group homes around the province was needed to address the needs of autistic adults with varying levels of severity:
“Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or out of province.
“It’s fairly expensive to put people in group homes and if you have to send people out of the province then it’s much, much more expensive,” McDonnell said.
“If they’re placed far away from their families, that creates a lot of hardship as well. A lot of people aren’t functioning at the level they could. They’re simply not having the quality of life they should be having.”
McDonnell thinks the province needs to train people to be prepared to deal with adults with severe behavioural challenges.
“They should have stimulating recreational, educational programs. That is absolutely essential.
“That’s what we need to aim towards is setting up a system where we have some really well-trained people.”
NB has been developing increasing expertise in centrally located Fredericton. It is time to get it done and time to find some political leadership that will take an interest in the real challenges of autistic adults.
New Brunswick needs an adult autism center ... yesterday
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