Autism Disorder AND Epilepsy (But NO SUDEP!!!) at 6:05 AM

I was awake at 5:30 this morning, had some breakfast, and was enjoying a mug (not a cup, a mug) of coffee when I noticed that the time was 6:05 am.  Startled I jumped up to see if everything was OK with my son Conor.  Conor suffers from severe autism disorder and epileptic seizures, including half a dozen grand mal or tonic clonic seizures, since last Christmas. One feature of Conor's autism disorder is that he gets up at precisely 6:01 a.m. every morning.  He often wakes up before 6:01 but stays in bed until that time and then gets up.  Until this morning I can not recall the last time he might have slept in past 6:01.  I was worried when he had not come out of his room by 6:05. 

I worried because of the epileptic seizures from which he suffers. (My fear was brief; gone as soon as I ran into his room and saw him stirring)  Some who suffer from such seizures have been known to die in their sleep with no clear explanation, a condition called SUDEP, sudden unexpected death in epilepsy.  A special program  called The Center for SUDEP Research which will be a "Center Without Walls for Collaborative Research in the Epilepsies" has been  established in the US by the National Institute for Neurological Disorders and Stroke (NINDS)  to tackle SUDEP.

 A NINDS press release provides an overview of SUDEP and a brief description of the plan of action:

"While the causes of SUDEP are currently unclear, mounting evidence points to seizures that induce structural defects and/or brain circuit malfunction in areas that control cardiovascular and/or respiratory functions. Using a multidisciplinary approach, scientists and clinicians participating in the new center without walls hope to understand what causes SUDEP and how can it be prevented.

One team of researchers will identify genes, predisposition to neurochemical imbalances, and structural irregularities in the brain that may increase the risk of cardiac arrhythmias and respiratory disruptions in epilepsy. In parallel, another team will develop a sophisticated repository for storing and sharing genetic, tissue and clinical data samples collected from 400 study participants with epilepsy per year for three years at each of 10 clinical sites across the country. This team will also analyze the collected samples to identify risk factors for SUDEP."

Some may question why I would have been apprehensive about the possibility of SUDEP when my son did not come out of his room at 6:01 am.  The primary reason is that his adherence to the 6:01 routine was until this morning  almost without exception, a feature of his severe autism disorder.  The second reason is that a good friend who was, and is, very active in autism advocacy in New Brunswick lost her adult son to SUDEP. In that case her son appeared to be sleeping in past his usual time just as my son did this morning ordinarily a blessing for both parent and son. Her son, like mine, suffered from both autism and seizures, and was not sleeping in, tragically he had passed in his sleep.

As the parent of a son with severe autism who suffers from epileptic seizures I can not take any break from routine for granted, even very thankfully as it turned out this morning, one resulting from a few minutes of extra sleep. 

Dear Caregivers: DO NOT Leave a Person with Autism, Epilepsy and Intellectual Disability Alone in a Bathtub

Many news reports can have an impact on you for a variety of reasons.  It is especially true with reports of  young people dying at an early age, particularly when those young people share significant characteristics with one of your own children.  A BBC News story "We thought our son would be safe in assessment unit"  startled me when I read the story of 18 year old Connor Sparrowhawk who died in a UK assessment unit while left alone in a bath. Like my son Conor Doherty, Connor Sparrowhawk suffered from epilepsy, autism and a learning disability.  Like my son, Connor Sparrowhawk  suffered a grand mal/tonic clonic seizure while in the bath although unfortunately was alone.

 On October 24, 2014 our son Conor suffered a grand mal/tonic clonic seizure while his mother helped him bathe.  He went into convulsions and his mother yelled for help.  I was sitting downstairs at the time and upon hearing my wife's calls for help, ran upstairs and held him up in the tub until his convulsions stopped and he regained some level of consciousness.   His older brother helped me move our son Conor Doherty down to the living room where we cared for him on a living room couch.  We also spoiled him rotten for the rest of the day.  Conor slept on the couch that night while I slept on a second couch in the living room.  

Our son Conor's  bathtub seizure was scary but it could have been worse, much worse,  Our Conor, as with others with his conditions, could have died in the tub that day as was the case with Connor Sparrowhawk,  the 18 year old UK man, who like our son, had epilepsy, autism, and a learning disability, whose death and the anguish of his parents was reported by  Katie Razzall,  a special correspondent, to the BBC in "We thought our son would be safe in assessment unit":

"The 18-year-old drowned in the bath at an NHS assessment unit in Oxfordshire after having a fit in July 2013.

Connor had epilepsy, autism and a learning disability, but had always lived at home with his parents and siblings. He had been admitted to the unit 107 days earlier after becoming agitated and aggressive.

Sara Ryan, his mother, said: "He was a fit and healthy young man. He should have been supervised. If you have epilepsy, you shouldn't be left in the bath. I'm astonished they weren't supervising him in the bath, it's such a basic level of care."

A damning independent report by Verita for Southern Health NHS Foundation Trust found Connor's epilepsy had not been properly assessed or managed, and that his death was "preventable". Jeremy Hunt, the Health Secretary, has personally apologised to the family."

 As Connor Sparrowhawk's mother, Sara Ryan, said "If you have epilepsy you shouldn't be left in the bath. I'm astonished they weren't supervising him in the bath, it's such a basic level of care."