Seizures and Early Mortality - Some Autism Reality You Might Not Have Heard About at the WAAD Light It Up Blue Parties

Self injurious behavior is an aspect that is generally know even if it is not discussed at Light It Up Blue events on World Autism "Awareness" Day each April 2.  There is a tendency to believe though that all self injurious behavior is a purely behavioral response to external stimuli including sensory stimuli.  While that is often the case it is not always the case.  Self injurious behavior can be a reaction to internal pain or discomfort as shown in the pictures of my son Conor taken several years ago.  These pictures were taken early on a mild Saturday morning on the playground of the grade school he had attended years earlier.  There was no one else around, it was calm and quiet and Conor was happy on the swing. Suddenly his face took on a pained expression and he began hitting his head. I suspected these events might have been a seizure of some kind and his pediatrician said they might be.  His seizures, and epilepsy, were later conformed by a neurologist and Conor has had several full scale grand mal or tonic clonic seizures since then and a variety of other seizure activities. Pain is a feature of many of these seizures. 

As it turns out there is ample research pointing out that epilepsy is common on the autism spectrum; about 15 times more common than among the general population.  While Canadian autism charities generally fail to actually create any significant autism awareness the same is not true of the UK autism research charity Autistica which specifically reports some of the harsh realities parents of severely autistic children see and research confirms. In Personal Tragedies, Public Crisis the premature death rates of persons with autism are reported.  Early  mortality rates are high across the autism spectrum with most dying 18 years earlier than persons in the general population.  People like my wonderful son who has autism, intellectual disability and epilepsy die on average 30 years sooner than most in the general population. Please stop and think about that fact  ... 30 years sooner.

I do not show up for blue light parties. For those who do, if you have a young child with autism please know that epilepsy does not always show up for those with autism until they are in their puberty years as was the case with my son Conor.  If you see your child in pleasant conditions suddenly engage in self injury for no obvious reason.  It might be, as it turned out to be for my son. the onset of epileptic seizures. There might also be other pain inducing internal causes.  Either way be aware, be truly aware in a meaningful sense, and get your child to your family doctor for consultation.