Friday, May 20, 2011

Epilepsy and Autism

Thanks to local advocate Sally Colletti, I have discovered a new resource for Binghamton parents of children with autism. 

There is an article  that briefly discusses autism and seizures.  There is definitely a connection, and with that, I need to tell a story about Bil's past.  (I don't want to reveal details about Bil's health to protect his privacy, but I believe the following is not a betrayal of my policy.)

Years ago, Bil had an evaluation (one of several he has had during his lifetime.)  As a result, Bil was put on a medication.  As a family member of mine had epilepsy, I know a little bit (just a little bit) about epilepsy, and I immediately recognized the name of this medication.  It was a medication given to people who suffered from seizures.  This puzzled me because, to the best of my knowledge, I had never seen Bil have a seizure.

I know very well that not all seizures are "obvious" but I've never seen Bil staring into space for a few seconds, or other symptoms of what are called "absence seizures". (Years ago, when this evaluation was written, it probably would have been called petit mal seizures, which is the name I knew them by in my childhood.)  Nor have I seen evidence of tonic clonic seizures, the type many people not in the "epilepsy community" associate with epilepsy.  In my childhood, these were called "grand mal" seizures.

Of course I am a layperson, and I am mostly familiar with the type of seizures my family member had. (they were never fully controlled by medication.)  But my point is:  I had never had any reason to suspect this with Bil.

So I asked my mother in law about this.  She told me an interesting story (deleting the term"epilepsy").  Bil was put on this medication and why was never explained to her.  He started having strange symptoms, which (as it turned out) were side effects of the medication.  My mother in law, at some point, saw a TV show, associated the symptoms with the medication, stopped it, and Bil was fine after that.

I was told later on, in further investigation (by an advocate) that this was probably a case of misdiagnosis.

It still is true, however, that epilepsy and autism are interconnected.  A pity.  Epilepsy is so feared (and rightfully so-it does have the capability of killing people) but is also dreadfully misunderstood - and for a family member to face both epilepsy and autism:  well, it is just another burden for families.

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