Tuesday, June 8, 2010

The Invisible People with Autism

I hang my head in shame.

Monday, during our walk, my walking partner excitedly started to tell me about an autism walk she had participated in.  She knows I have a brother in law with autism.  I've talked about some of my concerns and adventures with her as we've walked, while she shares stories about her son, her daughter and her grandchildren.

Maybe she wondered why I wasn't there.  I guess my head has been in the clouds the past few weeks.  The honest truth is-I didn't know about the walk. 

I'm puzzled (no pun intended, and those in the autism community will catch this unintentional pun) that I never even found out on Facebook.

My heartfelt thanks to Bobby Larnerd, owner of Bobby's Place, where the walk started.  Bobby is a very giving man, and this is not the only fundraising event he has participated in.  He even gave money out of his own pocket as a donation, in addition to all the work he put in to making sure this event was a success.

The purpose of the walk was mainly to raise autism awareness.  My walking partner's awareness was certainly raised.  Not only did she help with setup but she also did the walk.  She reported that a number of people with autism participated in the walk.  She asked me some questions based on what she saw and heard and I was happy to talk to her some more.

One of the things I talked about to her (with no disrespect meant to those raising children with autism) is that there is so little written about adults with this condition.  In other words, what will happen to those children when they grow up?  What happens when those children age out of many supports?

Well then, you are in uncharted territory.  And I can write countless stories about that.

Yes, write me, and I can tell you.  And I can also tell you about how grown up people with autism, how it impacts their parents as they grow older, and their siblings, and their siblings' loved ones.  And their families.  And most of all, themselves.  That's why I don't call it a "disorder".  It is a part of them.  I am not sure that, given the chance, they would permit themselves to become "neurotypical" (a person without autism).

I don't say this with bitterness.  And my heart goes out to those suffering in this epidemic - some say one in every 150 live births, others one in 165, some have other statistics.  However you measure it, there are a lot of affected people. 

When my brother in law was born over 50 years ago, this disorder was so rare it took years for him to be diagnosed.  I sometimes wonder how he would have fared with an early diagnosis, but what is done is done.

People walk so that this never happens again.

While I am giving out thanks:  My thanks also to various businesses who donated food and other supplies for the march.  I know who you are.  I also know the name of one business that didn't support you,and I hope you will change your mind next year.

Next year, I intend to walk! (But please, someone, remind me.)

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