If I could cure my sister’s Autism, would I do it? For years I pondered about this question and never responded because, I never knew the correct response. After a few years I decided no, I would not, because I love her how she is, she is amazing just how she is and I would change nothing of her.
In 2013 she had her first convulsion and later that year she was diagnosed with Epilepsy. The day of her first convulsion and later the appointment with her epileptiologist giving us the diagnosis was the second most debilitating day ever. The first was her Autism diagnosis. After her Epilepsy diagnosis we tried medication after medication, we switched neurologist up to 3 times, we debated on the Vagus Nerve Stimulator, the Ketogenic diet and had EEG after EEG. The first years of her epilepsy diagnosis, which happened to fall during her teen years, were the worst. She had convulsions and seizures constantly. Her seizures were a bit different though, she had absence seizures. These seizures are subtle but debilitating. She will stare off for about 10 seconds, and that is her seizure, only it doesn’t just happen once, it happens several times, sometimes most of the day, causing her to be lethargic and disconnected with the world. Not only were her absence seizures constant but it was hard denoting between her seizures and her Autism. Because she couldn’t fully express to us when it was a seizure versus sensory overload vs her being a teen vs anything else we had to consult with a developmental pediatrician and had to get more hours of occupational therapy, speech therapy and physical therapy so they could help us denote what was what in regards to her Autism, and see how we could treat those things like her sensory overload, teach her how to express her pain, and so forth. We had to get her BCBA back on board to help us characterize when her behavior was just her being a teen versus her Epilepsy or Autism, and how to treat that. Now, in 2019, we can say her epilepsy is stable after trying endless medication and treatment, and she is being amazing like always.
We all have an ultimate goal for our children, or in my case my sister, when it comes to medical care, for them to endure the least pain as possible and be able to what they want to do regardless of their diagnosis. So when the diagnosis starts to impede the child’s future or cause pain, as physician, as parents, as family members, we want to treat. This is what we did when she was diagnosed with Epilepsy. We tried countless combinations of medications till we found the one that allowed her to do what she wanted to do and be happy. This is the same for her Autism. We have, and are, treating her Autism with countless therapies to help her be able to immerse in the community and do what she wants to do.
So, if I could cure my sister’s Autism, would I? Yes.
This answer may vary on where one is on the Autism Spectrum. If one’s Autism is not impeding what one wishes for their child or family member, then maybe one would choose not cure it. I would do it now, but maybe in a few years from now, when she has overcome that sensory overload and other thing, maybe I would say no, but right now I say yes because at the end of the day I want her happy. Autism or no Autism, Epilepsy or no Epilepsy, she is amazing because she is unique regardless.