Research Review: Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?

My son Conor, now 19 1/2 years old, stimming, a recognized feature 

of autism spectrum disorder, in this older picture.

Conor, a couple of years ago, at the Chalmers Hospital 

intensive care unit, where he was being treated for  rhabdomyolisis, 

a serious adverse  reaction to his epilepsy seizure meds at that time. 

As the father of a son with autism spectrum disorder, intellectuall disability and epilepsy I have asked myself if these conditions are in fact related. It has been my non evidence based belief, based solely on observing, caring for and loving my son for almost 20 years that he has one condtion that affects him and causes his deficits.

I have attached a copy of the abstract of the reseach review Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?  I  hope to obtain a copy of the study itself and more importantly I hope that the study encourages more study and discussion by neurological researchers and professionals of this subject.

Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?

Abstract

Autism spectrum disorders and epilepsy commonly co-occur. In this review, we consider some unresolved questions regarding the temporal relationship, causal mechanisms, and clinical stratification of this comorbidity, highlighting throughout the interplay between autism spectrum disorder, epilepsy, and intellectual disability. We present data on the clinical characterization of children with autism spectrum disorder and epilepsy, discussing distinctive phenotypes in children with this comorbidity. Although some distinctive clinical features emerge, this comorbidity also informs convergent pathways in genetic variants that cause synaptic dysfunction. We then move beyond diagnostic categorization and consider the extent to which electrophysiology as a quantitative biomarker may help guide efforts in clinical stratification and outcome prediction. Epilepsy, and atypical electrophysiological patterns, in autism spectrum disorder may inform the definition of biologically meaningful subgroups within the spectrum that, in turn, can shed light on potential targets for intervention.
© The Author(s) 2015.

KEYWORDS:
autism spectrum disorder; biomarkers; electroencephalography; epilepsy; intellectual disability

http://www.ncbi.nlm.nih.gov/pubmed/26374786

Jeste SS1, Tuchman R2. J Child Neurol. 2015 Sep 14. pii: 0883073815601501. [Epub ahead of print]

Conor's Superstore Seizure

Yesterday Conor, his mother and I went to the Superstore on Main Street in Fredericton. As we moved to the express cash to pay for our purchases Conor began convulsing and a full scale tonic clonic or grand mal seizure was underway.  I was able to hold him carefully as he fell to the floor to prevent head injury, placing him on his side so he would not choke.  A shopper, who happened as it tourned out to be a paramedic, came by and provided assistance, including timing the convusions which lasted approximately 3 minutes. and providing assessment commentary as Conor recovered.  The 3 minutes of convulsions and subsequent recovery time may not seem like much but if you are holding your son's head up off the floor while he convulses on the floor of a busy grocery store it can seem much longer. 

Three well trained employees of the Superstore also provided assistance directing shoppers away from our immediate area towards a different cash, forming a line between us and other shoppers, getting a thick blanket for under Conor's head, offering moral support and suggestions, making   a wheelchair available for when Conor was ready to be moved to my car, and actually accompanying us to our car in the parking lot.

Thank you to the Superstore who had trained staff on site to assist in seizure situations, thank you to the 3 employees who provided assistance and support and thank you to the paramedic who happened to be shopping in our immediate vicinity as Conor begain convulsing.

Thank you everyone.

Conor After Another Seizure

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Conor has been on  a good run for the previous 7-10 days and today was pretty much the same until 6:15 this evening when we heard a loud thump uupstairs.  His mom ran upstairs and screamed for help when she saw him convulsing on the floor with thick fluids oozing out of his mouth.  We had to keep him on his side with his head away from any corners or hard objects.   This was Conor's 4th grand mal seizure since Christmas. Conor's convulsions did not appear to last too long compared to some previous seizures ..  approximately 2 minutes.  Stilll 2 minutes of your son in convulsions is enough to scare you all over again. Conor also recovered quite well. The picture above was taken 45 minutes after the seizure and while he was still a bit groggy he was regaining alertness, speech and walking ability.  He is now sleeping soundly exhausted from another seizure.  I just checked and his head was on the side on his pillow  and he was breathing loudly but clearly.  Dad is starting to relax ... a little bit.

Autism and Epilepsy from Facebook to Reality: Conor Experiences Another Seizure

UPDATE: I had originally indicated the the persons with Conor when he had his seizure 2 days ago had not seen convulsions.  That is what I was told when I arrived.  Yesterday though I received the notes of the education aide who was with him throughout the seizure and they indicate he was convulsing for several minutes, in other words a classic tonic-clonic seizure including fall and  convulsions.

Earlier today I posted to my Facebook page and to the Autism Society New Brunswick FB page the link to Tonic-clonic seizures at Epilepsy.com.  I included the note that it was important for persons with autism to be aware of such seizures because of the high number of person who suffer from epileptic seizures including my autistic son.  A few hours later I got a call from the Leo Hayes High School and was informed that Conor had suffered a seizure. They did not think it was Tonic-Clonic although he had fallen and lost consciousness.  When I arrived he was being attended to and was sitting in a wheelchair.  He was groggy with very limited speech and needed assistance getting into the car for transportation home in the Dad-Mobile.  He was tired at home and I insisted he stay on the couch for awhile and rest.   Dad and Mom proceeded to provide the sure fire Spoil Em Rotten Recovery Treatment including supper from Papa John Pizza.

From Facebook to Reality in a Flash.  It can happen.

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."

Extremely Grateful

The Intensive Care Unit of the Dr. Everett Chalmers Hospital in Fredericton made a difference for our family.  They saved our son Conor's life after he suffered an adverse reaction to new anti seizure medication.  They gave our son back to us. For that we are, as the CBC caption underneath the audio of my interview in support of the ICU campaign to raise funds for new monitoring equipment put it ... extremely grateful. 

As we understood it Conor's muscles were breaking down and releasing proteins that were very dangerous to his kidneys. The ICU team were monitoring him constantly while flushing the meds out of his system, taking blood samples and other tests and examinations and starting him on the road to recovery.  

Conor spent 6 days in the ICU with his mother beside him where she slept on a cot for the  entire stay.   During those six days the ICU doctors and nurses were reading his vital information in the room he was in and at the large desk area outside the patients' room.  This monitoring equipment is 10 years old and needs replacement.  If you can help the ICU team save lives   please do so by contributing at the Chalmers Foundation. 

Audiotape of my interview by CBC's Terry Seguin yesterday in support of the campaign to raise funds for new monitoring equipment for the Chalmers' ICU:

Conor at the Chalmers Hospital's Intensive Care Unit 

In the left of the photo above you can see some of the 10 year old 
monitoring equipment that the ICU team used to save Conor's life.

Conor home and happy after his first day back at the swimming pool as part
of his school recreation activities. We asked his school assistant to take him only in to the shallow end but Conor had none of that and went to the deep end, swimming, jumping off the diving board and going up and down the large slide.