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AUTISM: IDENTITY OR DISABILITY?

Posted Apr 03 2013 12:00am

http://www.letschatautism.com/wp-content/uploads/2011/09/autism.png

If your child had Autism, would you want him to get treated or do you think that would change “who they are.”

Change who they are?  We all change who we are every moment of every day because that is our nature.  We are the sum total of all of our characteristics, good, bad and indifferent, our experiences, the people we meet in life and what we learn.  Given different circumstances, war, peace, hunger, satiety, illness, wellness, depression, happiness, love, hate, we are constantly changing.

There are many cultures who make meals with 5 tastes so they experience all there is to experience in every meal.  Experience is good.  And  I don’t think children are defined by an illness any more than they are defined by a capability.  Sure, your child is your Autistic child but do you define them that way?  “Hi, I’m Jane and this is my Autistic child Bobby.”  Maybe you do.  Maybe that helps pre-explain some behavioral idiosyncrasies.  But on a deeper level, isn’t your Autistic child “just” your child just as your child the doctor is fundamentally “just” your child.  If he loses his job or gets a divorce and comes crying to mommy, isn’t he “just your child.”  I think a child who’s got a condition or whose leg is amputated will continue to adapt and change just as a child who’s an elite runner or a protege pianist will continue to adapt and change.  It is not our illnesses or gifts that define us, nor is it what happens to us that defines us nor even what we are that defines us.  We are defined by how we deal with life, with adversity, with others and with ourselves.

All humans are dynamic and changing.  We learn, we grow, we evolve, we mature.  There is no single snap shot in life and to hold onto one identity is unhealthy, it would seem to me.  Like holding onto a snap shot of a child and remembering them only in that moment…even after they have grown past that moment and that point in their life.  I think we should all embrace change, growth and evolution.  I think we should all hope for more or hope for different, always, for all of us… because without it we are talking about a static existence.  And I believe that when we stop evolving, we start dying.

This argument goes on in the deaf community too.  I made the mistake of once, a long time ago, assuming everyone would want their deaf child healed.  Boy did I get an earful (no pun intended).  Many parents of deaf children, especially if the parents are deaf themselves, don’t want the child to lose the deaf culture.  But I wonder…does a deaf child who gains or regains their hearing suddenly forget sign language? DO they lose the ability to appreciate silence?  Or do they gain something and add it to their experiences, to who they are, to their identity?

I studied architecture and now I work in stem cells.  Have I lost what it means to be an architect?  Shall I excise it from my life and my resume?  Or did that help pave my path and will color my life for the rest of my life?  I look at buildings in a certain way, I think about space and light and movement.  I design for friends and neighbors.  I don’t think I’m the best architect in the world or even as good as I could be if I practiced my craft every day and I’m certainly not up to date on some of the codes and software but those experiences will never go away and I will never be able to define who I am without them.  I don’t know.  Maybe that has no bearing on a child with Autism.  I probably would have to walk a mile (or run a marathon) in your shoes.  I’m just on the outside looking in.  But I’m willing to listen and learn because, after all, I’m always changing.

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