A much higher percentage of people with autism spectrum disorders suffer from epileptic seizures than among persons in the general population. At the severe end of the autism "spectrum" it has been estimated that as many as 39% also suffer from seizures. My severely autistic, intellectually challenged son Conor suffers from seizures including tonic clonic known as Gran(d) Mal seizures and almost lost his life last year to an adverse reaction to his seizure med at that time. Among persons with epilepsy there are many risks surrounding loss of consciousness and breathing during seizures. Approximately 1% off persons with epilepsy die as a result of SUDEP, Sudden Unexpected Death in Epilepsy. In the UK the SUDEP Action organization has started a SUDEP Awareness Day, October 23. It has received the support of a UK MP Ed Vaizey.
The Epilepsy Foundation has a page on SUDEP which sets some important information:
What is SUDEP?
SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found when an autopsy is done. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150. These sudden deaths are rare in children, but are the leading cause of death in young adults with uncontrolled seizures.
The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.
Can SUDEP be prevented?
Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures. Paying attention to managing your seizure medications as best as possible, taking them regularly, and preventing seizures emergencies is all part of this.October is autism awareness month in Canada. With the very large percentage of persons with autism disorders who also suffer from epilepsy it would be helpful if autism awareness organizations provided information about epilepsy and SUDEP.