It is now, as far as we know, 1 year since Conor suffered his last grand mal (tonic-clonic) seizure; loss of consciousness, falling, violent convulsions. It is possible he could have had a grand mal seizure while sleeping and we did not know. I sleep on a living room couch near Conor's room so I can hear any noises but it is not a full proof system. It is also possible, although I am just a layperson, that he has had seizure related headaches of the sudden onset types resulting in Conor banging his head that led me to seek medical advice over whether he was having seizures. Our family doctor and the neurologist to whom he referred Conor agreed based on the pictures I was taking at the time with a fast, athletic setting on my camera, that it could have been epilepsy related. Testing and full grand mal seizures later left any doubt. It has though been a grand mal free year as far as we know and I will that that! ... For families with autistic children particularly those with autism and intellectual disability I have re-posted my last years commentary on autism and epilepsy.
A dad's suggestion: Families should be aware that their autistic children could have a significant chance of seizure activities at some point and ask their doctors about that possibility.
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Conor Suffers Another Seizure 6:05 a.m. September 2, 2017
Conor's latest tonic clonic (grand mal) seizure took place at 6:05 a.m. this morning just after I placed his breakfast in front of him. . I was expecting a grand mal seizure soon as it had been roughly 3 1/2 months since his last seizure in mid May and they have tended to happen 3 to 4 months apart. This seizure happened while Conor was sitting on the couch, watching a movie and starting to eat his breakfast. He started shaking violently and slid down off the couch. I held him to keep his head from striking the floor and slid some soft blankets under his head. He lay on his side and some of the food he had started to eat came out of his mouth. Eventually the violent shaking subsided and he was able to speak and, with some help, move. We went to the market for 2 of Dan's sausages and everything seems pretty noramal.
Anyone with a child with autism, especially if their child is developmentally delayed, (persons with autism AND intellectual disability are much more likely to suffer from epilepsy/seizures) would be wise to consult their medical advisers. Epileptic seizures are very common among persons with autism and they can have serious, dangerous, even deadly consequences. The UK Autistica report, Personal tragedies, public crisis, based on a large high quality Swedish study found that persons with autism tend to die between 16 to 30 years prematurely with the high numbers found among those with autism, intellectual disability and autism. It is also worthwhile to note that the Autistic report indicates that in cases of people with autism seizures do not appear until their teenage years unlike in the general population when it is likely to show up in the child's first years. In Conor's case his seizures appeared in his teenage years.
Each grand mal seizure is a reminder of my son's scary future prospects. With autism, intellectual disability and epilepsy he is at serious risk of decades early premature mortality. For now though he is with us and I am relieved and happy that it happened again while I was just feet away.
Premature Mortality In Autism and Intellectual Disability - Epilepsy
"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.1 0 In the typical population, the risk of epilepsy 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"
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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.
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