My son Conor, at the DECH Intensive Care Unit in 2013. He was there with a potentially deadly reaction to his epilepsy seizure medication at the time, a reaction diagnosed and formally called rhabdomyolisis. Intellectual disability often accompanied by epilepsy a life expectancy reducing combination is seldom if ever present at autism "awareness" events.
New Brunswick, which was once a leader in provision of autism services and raising actual autism disorder awareness, has been back sliding in recent years. Initially, prompted by very active parent autism advocacy, an early autism intervention program was started at the UNB-CEL and financed by government. Several hundred autism trained teacher aides were also trained in direct response to parent autism advocacy. As several news stories have recently proven however there is much more that needs to be done in school services. NOTHING has been accomplished in adult autism care and treatment. Autism disorder awareness has not grown either.
If you follow the mainstream media accounts autism is nothing more than super hero costumes, blue lights and bowling for funding for the autism community centres. The centres do provide some social activities for persons with autism particularly children. As charities with partial government funding it is risky for charitable status to actually advocate for much needed adult autism services or even to openly discuss the drastically life threatening risks that accompany autism disorders.
At the high functioning end of the autism spectrum depression and suicide reduce life expectancy on average by 9 years. At the other end of the spectrum, which includes 44-50% of the spectrum with intellectual disability, life expectancy is reduced by 30+ years. The principal reason for this reduced life expectancy is epilepsy which so often accompanies autism with intellectual disability.
With autism and intellectual disability epilepsy can become known in the early years. It can also become known in adolescence as was the case with my son with autism, intellectual disability and epilepsy. In the pictures below my son is visibly happy on the swings of his old grade school playground on a beautiful and quiet Saturday morning. I took pictures on a setting used in photographing athletic activity and you can see the transition from joy to sudden pain and self injury.
As the pictures show not all self injury is an attempt to communicate. In this case it was a response to internal pain. I had known a person with epilepsy in the past and thought it might be a seizure. I took the pictures to Conor's pediatrician and subsequently to a neurologist. Epilepsy was confirmed and Conor has regularly suffered grand mal or tonic clonic seizures as well as some of the less obvious forms of seizures.
In today's New Brunswick, like most of North America, you are likely to see many light it up blue and super hero walks for autism. Generally the funds raised from public events go towards funding the organizations that promote them. Little if any goes towards raising sorely needed autism awareness that addresses the harsh realities of autism disorders or in advocating for autism services; particularly adult autism services.
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