Thursday, October 27, 2011

An Autistic Journey

Parenthood is a momentous occasion under the best of circumstances.  A new parent is filled with the warm glow that only comes from the arrival of a new baby, as well as the incurring responsibility of caring for that child for the following years through adulthood.  What happens in the case of autism is the new parent finds out gradually that something is not quite right.  Their child is not talking, and the child's doctor says to his parents that their child should have started talking months ago.  A cold, empty pit forms in the new parents stomach: something is wrong with their baby.

Sometimes the autism is identified promptly, and measures are taken immediately: speech therapy commences, cognitive therapy begins, and parents wills are tested.  Sometimes, though, the autism is not identified promptly.  Doctors disagree over what is wrong with the child.  The parent is crying inside in a loud voice: please...just tell me what is wrong...I don't care what I have to do... 

This is what happened to me.  I was misdiagnosed when I was younger and when things continued to go wrong, I was tested again by a different doctor, and the autism which had eluded diagnoses for so long was properly identified.  Then my medications were adjusted, and the slow recovery began.

Even after autism is diagnosed, the long road continues.  The autistic child has to learn the ways of an unnatural world where his instincts work against him.  All he wants is to be heard and understood.

What parents need to understand is that your child is not sick.  Your child is a foreigner to the human race. He plays by different rules; what means one thing to you means something else entirely to him.  He has to learn an unnatural language, new sets of behavior, and norms and rules that may be normal for parents, but are not normal for an autistic child.

He fights because he doesn't understand.  He has a language already and wonders why he can't talk to his parents.  Gabbling, moans, and screaming all have meaning to him.  They address thoughts, emotions, and sensations.  He is confused and might be scared that no one understands him, but he has to change his ways and to learn the ways of the world.  It is not easy for him.  He doesn't mean to make it hard for his mom and dad.  He wants nothing more than to understand and to be understood.

The best comparison is that it's like trying to force a child to speak English and learn American ways: this child has spoken another language his whole life and is accustomed to a different culture.  I am not questioning the methods parents use.  I am trying to help them to understand what their autistic child is going through.

Over a long road, the autistic child learns the way of the world, but he doesn't like it.  It feels all wrong for him.  He has figured out by now that he does not see eye to eye with his parents, his teacher, his classmates.  He might be hostile about it.  He might be angry about the injustice of it all.  I know I was.  I thought: why me?  Why did I have to be different?  Why doesn't anyone understand?  Is it going to be like this forever?

Bullying from others increases the feeling of loneliness.  The insults that come so easily from one child's mouth shatter the self confidence of the autistic child.  It is a small wonder that I was depressed by the time I was diagnosed with autism.

Stability is not found easily or painlessly.  Neither the parent nor the child chose this lifestyle, but with understanding comes stability.  Now the autistic child feels like he is not alone.  People understand how smart he really is.  They understand it is normal for him to have insufficient knowledge in one area of life and near genius capabilities in another area.  If he finds the right support and conditions like me, or Dani Bowman (a sixteen year old autistic girl who owns an animation studio) or like Taylor Morris (an autism advocate and model who has numerous videos on YouTube intimately describing her autism), he will find more than he or his parents ever imagined.  He could even become the next Albert Einstein or Bill Gates (who are both suspected to have autism).

Those who understand their autism enough to tell their story should not stay silent.  Every account brings everyone involved with autism closer to understanding the complexity of the spectrum.

1 comment:

  1. My daughter was recently diagnosed with PDD-NOS . You have given me such hope and inspiration. Thank you.