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What is it like for a Parent of a Child with Severe Autism?

Posted Sep 01 2012 8:27pm
I had always assumed that other people understood what I go through everyday and that just knowing my son's diagnosis was enough for them, the one's with normal lives to understand, but I couldn't have been more wrong.

Yes....they know I have a son with autism, but then later I come to find out, they thought they knew enough to judge me.

I've often thought about how to explain to a parent of neotypical (normal) children, what is like to raise a child with Severe Autism.

Did I mention?

  • He can't talk?
  • That the Obsessive Compulsive routines and behaviors are a constant battle? 
  • He needs the exact routine, everyday, every minute of the day?
  • The digestive distress, the undigested food, the constipation, the diarrhea?
  • Self injurious behaviors-head banging, hair pulling, self punching?
  • The proneness to wonder away from home?
  • The special diets?
  • The vitamins and mineral supplements?
  • The doctors who refuse to treat him like a person?
  • The sleepless nights, when he goes from crying, to giggling, then to jumping on the bed, or the nights when at 5 o'clock in the morning after being up since 1:30 am, I just watch him stare at the television set, wondering how will I be able to get up in two hours?
  • The socially unacceptable behaviors of stripping naked and the smearing of feces all over walls and on himself?
  • The self imposed isolation, which might seem extreme to some, but it's the only way I can make sense of my life-not to mention how devastating it is to see other families apparent normalcy and know that, that life is not even a remote possibility ever again?
The sum of all the above is an exhausted woman with little patience for such an intolerant world. All of those struggles and hard work seem small compared to the torture of the memory of my youngest son who was whole, healthy and happy once and almost overnight regressed into what I came to know as Regressive Autism-the two most hated and devastating words in my vocabulary.

So I say to you who dare to think you know what my life is like, that unless you have a fifteen year old in diapers, you can't even begin to understand, and much less judge me!

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