Monday, April 4, 2016

On Awareness/Acceptance/Whatever

Other years, I've tried to write a post about Autism Awareness/Acceptance Day/Month.  This year, I wasn't going to.  This is partly because the whole idea of an autism day or month seems to be very controversial, and I am not much into controversy.  For those who might not get why it would be controversial---from what I understand, Autism Awareness Month and the whole Light It Up Blue campaign was a brainchild of Autism Speaks.  Autism Speaks is not a well-liked organization with autism circles.  There's a variety of reasons, the big ones being that they portray autism very negatively often, and that they give very, very little money to actual help those with autism---most all their money goes to administration or to research.  They also haven't been too interested in having people with autism on their boards.  I would tend to feel these are pretty valid criticisms.  However, I know that most people who do things for autism awareness, like wearing blue or putting up blue lights, have no idea what the history behind it is.  I believe in taking gestures in the spirit in which they are given, and so I don't get that upset over all of it.

However, the other reason I'm not trying to write an autism awareness/acceptance post is that I more and more realize I am not aware of autism in general. Very few people are.  I am aware of one child, Janey, with autism.  And autism is only a part of her.  I can't take anything about her and generalize it to the larger autism world.  She is herself.  I can and do and will write about her, my daughter, and the joys and struggles involved in raising her, and I am happy if that helps others raising children with autism and if it helps others better understand what it's like, in my particular case, to raise a child with special needs.

Several times lately, I've seen writing about how in many ways, there truly is more awareness of autism than there was in the past.  I've noticed this.  When Janey breaks down in public, or when she doesn't answer someone who talks to her, or when she shows her unusual behaviors, I often am quick to say "She is autistic"  I do this partly to fend off those who might think she is misbehaving, and partly to do my own little part for awareness.  More and more, though, I get the response "Oh, I knew she was".  People are more aware than I'd say they were even five years ago of what autism can sometimes look like.

My hope is that there is a progression with issues like autism.  First, people become aware of it.  Then, they are open to helping with it, and open to government and schools and cities spending money to help people with autism.  You need to be aware of what is needed before you can understand why you need to give that help.  That is part of why I write here.  It's easier a lot of times to relate to one particular child than to a concept in the abstract.  I want to do my small part to make people aware of one child with autism.  I don't speak for anyone but Janey and our family, but in telling our story, if people become more aware of autism in general, I consider it a plus.

How did we spend our special autism day?  We had a good, quiet day.  Janey was quite happy all day (and all weekend).  She watched videos, played with her iPad, ate a lot and danced to music.  We took a couple car rides, including a long one to Dairy Queen (the closest one to us is a ways away) and she had chicken and french fries while we rocked to her car music.  There was of course a bit of screaming here and there, a little bit of arm biting, but a lot of happiness and laughter, too.  Janey, you have made me aware of autism.  You have led me to accept autism.  And I love you.

No comments: