Autism Spectrum Disorder is a complex, neurological disorder.
There are some persons with autism who have specific talents and abilities and the entertainment industry and even some serious news organizations love to tell their stories. They are truly feel good stories to see some one with special gifts they can share with the world. The reality though is that autism is a disorder, literally a spectrum disorder. The harsher realities of that spectrum disorder are, with some exceptions, generally ignored by the mainstream media which tends to focus on feel good, success stories of higher functioning autistic persons like Temple Grandin in the US or Michelle Dawson in Canada.
Some of the harsh realities faced by many with autism disorders:
1. Between
40% (US CDC Estimates) and
50% (World Health Organization estimate) of persons with an autism disorder also suffer from an
Intellectual Disability.
2. Approximately
30% of persons with autism suffer from
epilepsy. And when I say suffer I mean suffer.
I have seen my severely autistic son with intellectual disability, who also has epilepsy, collapsed on Main St. Fredericton in the middle of winter from a grand mal/tonic clonic seizure. I have rushed upstairs to pull him out of the bath tub when he suffered a tonic clonic seizure while he was bathing.
The effects of the seizure medications can change the lifestyle of an autistic person including weight gain, shortened life expectancy and even SUDEP (Sudden Unexpected Death in Epilepsy).
On one occasion my son suffered an adverse reaction (as determined by the Dr. Chalmers ICU team} called
Rhabdomyolysis which is described on
Medline Plus as "
the breakdown of muscle tissue that leads to the release of muscle fiber contents into the blood. These substances are harmful to the kidney and often cause kidney damage."
Conor during his six day stay in the Dr. Chalmers Hospital ICU, recovering thanks
to the great work of the Chalmers ICU team, from his Rhabdomyolisis,
adverse reaction to his seizure medication at the time.
3.
Self injurious behaviors are common in many persons with autism disorders. In some cases it may be a reaction to sudden internal pain, external sensory overload or anxiety.
Self Injurious Behaviour: Conor used to Bite his Hand EVERY DAY
when he was placed in the "inclusive" mainstream classroom where he was stressed out
by the sensory overloads. When he was moved to a separate location in the
school to receive his autism specific ABA based instruction the biting ceased.
He has since been accommodated outside the mainstream classroom and loves
school displaying anxiety if the thinks school may be cancelled.
Self-Injurious Behaviour can result from internal physical pain as appeared
to happen in the series of pictures above taken on a pleasant, quiet Saturday
morning where Conor was happily enjoying the swings when he began fiercely smashing his head.
WHAT SHOULD BE DONE? AN AUTISM CENTRE BASED NETWORK OF AUTISM SPECIFIC GROUP HOMES WOULD IMPROVE THE LIVES OF MANY WITH MODERATE TO SEVERE AUTISM DISORDERS
In NB parent advocacy resulted in the highly respected UNB-CEL Autism program and the early autism intervention program that was recognized by the Association for Science Treatment in the US as a model for consideration by other Canadian provinces. Parent advocacy also resulted in the autism specific training of education aides and teachers in our schools and prompted the NB government of the day to reverse its previous decision to close the Stan Cassidy autism team located in Fredericton.
Fredericton is where NB's autism expertise has developed. It is a centralized location which is why it is the capital of NB. As a location an autism center in Fredericton would reduce travel time for families with severe adult autism members who could reside there. Autism, especially at the severe levels is a challenging complex disorder for everyday life and in emergencies. An autism centre in Fredericton could operate efficiently in providing consultation and oversight to autism specific group homes located in communities around the province in close proximity to families just as has already been done for early autism intervention with training provided in Fredericton and treatment facilities in different communities.
