New Brunswick's No. 1 Autism Need - Addressing Our Autism Early Mortality Crisis

Many families and autistic individuals have raised concerns over early deaths in autistic people. Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time. Personal Tragedies, Public Crisis, Autistica Executive Summary

We have witnessed another Blue Light Festival, also known as World Autism Awareness Day, on April 2 which, as usual, generates very little autism awareness. In fact the feel good stories conceal the reality of the serioius challenges facing persons with autism, their families and caregivers. There has been very little discussion of NB autism needs and in particular of NB's invisible autistic adults those living with autism, intellectual disability and epilepsy a combination of conditions which is common on the autism spectrum and which is characterized by a drastically reduced life expectancy 30 years less than persons in the general population. 

Thanks to the UK autism charity Autistica no one should now be ignorant about the challenge facing adults with autismm ID and epilepsy. The Autistica Report Personal Tragedies, Public Crisis reported the results of a high quality Swedish study that the life expectancy's of persons with autism disorder are on average 16 years less than persons in the general population with those with autism and intellectual disabillties dying 30 years before their time. The primary cause of death for those with autism without ID is depression, for those with autism and ID it is epileptic seizures.

Epilepsy in autism Between 20% and 40% of autistic people also have epilepsy and this rate increases steadily with age – in contrast to a one percent prevalence rate in the general population. 10 In the typical population, the risk of it is greatest in a child’s first year, decreasing in risk through childhood, then remaining stable and not increasing again until old age. 11,12,13 In the majority of autistic people who develop epilepsy, their seizures do not appear until their teenage years, much later than average.5,14 This suggests that the underlying triggers of epilepsy may be different in autism. Autistic adults who also have a learning disability have been found to be almost 40 times more likely to die from a neurological disorder relative to the general population – with the leading cause being epilepsy.3 Despite the very high prevalence of seizures in autistic people and the high death rate from epilepsy, there has been virtually no research to establish whether treatments used for epilepsy are safe or effective in the autistic population. More research is urgently needed into the relationship between epilepsy and autism and the impact of epilepsy over the lifespan in autistic adults. - Personal Tragedies, Public C

This father of a 22 year old son with ID and epilepsy can not celebrate his autistic disorder. Nor can I forget for even one day the harsh reality that my son's life expectancy is 30 years less than persons in the general population. I am now more than ever puzzled and surprised that the people of New Brunswick including government and health care professionals seem totally unaware of the public crisis that faces so many NB'ers with autism.  With no plan for adult autism residential care and treatment in place I can not look at shiny blue lights every April 2 and pretend that all is well.

Harold Doherty, Conor's Dad