January 5, 2014

Come to the Table

                                                                         
(originally published 1/12/13)
    
My son, who is a former micro-preemie, celebrates his birthday next week...so thankful for him and for the best 8 years (and hardest) of my life.  But no wonder I've also found myself crying at the drop of a hat, fighting a headache, and feeling overall yucky.  The memories of his very early and traumatic birth come flooding back. 

This morning I was looking at the video of the first few months of his life.  He sat down beside me and asked "is that me"?  As we watched, he said it made him sad and he didn't want to watch it.  I think he is just now trying to process his early birth and beginning to grieve.  He realizes he isn't as big as other kids his age, has sensory issues and delays, and it really bothers him.  It is a full-time job trying to grow his self-confidence, advocate for his education, and just be his Mom.  And his biggest fan.

Today, while trying to search for adoption legislation being introduced in OK this year, I came across SB 101.  It creates a Task Force to review services in OK for Adults with Asperger's/Autism.  What I noticed about the bill is that it fails to appoint any adults with asperger's/autism, the very people for whom they will be making decisions.

As an adult adoptee who attended several Adoption Review Task Force meetings (open to the public) at the Capitol of our great State, without ANY actual adult adoptees on the task force, it struck a familiar and sad chord.  In fact, those who were appointed were mainly "professionals" who make their living in the business of adoption. 

Adoptees are regarded as perpetual children under the law, even though we grow up,  have voices,  and should be considered the true "experts" on adoption ~ we live it.  Yet, we are still the only U.S. citizens stripped of the right to access our own birth certificates.  See this post entitled "Human Rights".

In the same way,  aren't adults with asperger's/autism  the true "experts" on living with a sensory/neuro-difference?  Shouldn't they be the FIRST people, not just invited, but sought after, to sit at the table appointed to make "recommendations" about their own lives?

In "The Autism Rights Movement", a new wave of activists wants to celebrate atypical brain function as a positive identity, not a disability.  Ari Ne'eman writes,

"While people with diagnoses of autism and Asperger’s have difficulty with social interaction, he added, “we are not incapable of it and can succeed and thrive on our own terms when supported, accepted, and included for who we are.”

Moreover, rather than advocating for a cure, or seeking research into the cause of the much-publicized “autism epidemic,” some activists argue that society needs to change, not autistic people.

I think these self-advocates explain it perfectly in the article, "Who Should Lead the Autism Rights Movement". 

"Historically,  all civil rights movements have been led by self-advocates, and the autism rights movement is no different. Would MLK or Mandela have been such revolutionary figures had they been white?"  Another wrote, "It's interesting that I read language like 'autistic adults should have a voice'—to me it should be that autistic adults ARE the voice."

Let's let our state legislators know.
Nothing about us without us. 

4 comments:

thecaffeinatedaspie said...

Oh, this is excellent. Thank you so much for this. As an adult autistic (who has two children on the spectrum as well), I very much appreciate others standing in my corner, as it were, to voice some of these things as well. There are so many people and organizations who don't want our input, and who would like to give into the idea that autism is a tragedy and that adult autistics are eternal children, but we do fight back. Thank you for writing this.

SaraC said...

I thought you might be interested in this police training material in Pittsburgh made by children with autism and their parents.

SaraC said...

Forgot the link

http://www.post-gazette.com/local/region/2014/01/06/Encountering-autism-Goal-of-DVD-is-to-sensitize-police-to-those-with-disorder/stories/201401060043

Baby Girl Lowe living life as Samantha Franklin said...

Thank you!