Here in DC the AS2DC summit just wrapped up – 3 days of policy meetings, photo-ops and advocacy.
As a prelude to the party, Suzanne Wright released a statement that has stirred a lot of pots. With that, the buzz has been ongoing. When I had the chance to read it on Tuesday night, I just shook my head. At best, it’s melodramatic. At worse, it’s grossly misleading.
Full Disclosure: I serve as a Community Ambassador for Autism Speaks (at least currently). I am someone who has participated in the Walk, raised money, and all that jazz. Please don’t poke me with your flaming Internet pitchforks, okay?
When B was diagnosed I searched out resources and found Autism Speaks. Truth be told, I have learned from them, but also from other organizations. But I leaned towards Autism Speaks, for one reason or another.
Recently, a new program was created to lead a grassroots effort – Community Ambassadors. I was asked to be one and I accepted. As a Community Ambassador I try and show people that autism is not a death sentence. But it’s a bit hard when this is the message broadcasted.
The inquisitive mind that I am I have tried to now look more into other posts about this. The more I read, the more I became concerned. After reading John Elder Robison’s resignation post – I was gobsmacked by his assessment. Someone who served on a board, as an autistic, calling out Autism Speaks. To me, that is a more powerful message than Ms. Wright’s statement.
I agree that there is more to be done. There is ALWAYS more to be done. However, aren’t we all in this together? Shouldn’t everyone have a voice to “speak”? And shouldn’t someone “listen”?
With that said, the staff I have worked with in the DC chapter have been phenomenal. The Community Ambassadors have been wonderful as well. But I just can’t sit back and think this is ok that this statement can be ok to the public. It’s not – and to compare my son to a missing child or a terminally ill child in our community (like Gabriella) is inaccurate.
On the way home from work Wednesday, I ended up behind a car with a unique license plate. It said “OK2BU”. Looking closer I realized that it was a special state plate for autism awareness. That struck a chord. We talk about awareness and compassion and all that but we all need to know that it’s ok to be whoever you are, autistic or not. It doesn’t mean that we don’t want to help our kids or have them succeed – but it surely doesn’t mean that they have to lose “who they are”.
Each autism journey is different. Ours is no exception. Our journey has moved from cluelessness to frustration to despair to hope (and that’s just in the last year). It constantly evolves and personally sometimes it feels like I’m on a roller coaster. It’s no picnic. There are times that I’m helpless when B is in meltdown mode over his shoes being “too loose”.
But, it’s our life and we are not going anywhere so we might as well get on with it (meaning: enjoy what we got).
B is a loving, caring boy with a big personality. He is extremely inquisitive. He is passionate about music, math and buses. He also needs guidance and cues to express his needs and emotions. But I’ll be damned to believe the “doom and gloom” that the statement seems to predict.
That is Ms. Wright’s point of view. But it’s not mine, nor many others.