Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
We’ve let families split up, go broke and struggle through their days and years.
No more. Tomorrow in Washington, D.C. we will gather an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit. We will demand a national response.
Don’t our families deserve it? America has always been about its great people.
Yet, we seem to have forgotten our children - and our children are our future.
Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.
This is autism.
Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
This is autism.
~ Suzanne Wright, co-founder of Autism Speaks on November 11, 2013
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Full disclosure...I work with Autism Speaks. I help plan our local walk. We have walked for many years now as a part of our team "A Journey for Jack", because that's really what this is - Jack's journey. It's his life. I'm along for the ride.
I participate in the conversation with Autism Speaks for several reasons. First, I do see Autism Speaks do a lot of good at the local level. They organize sensory-friendly events - like the one we attended earlier this year at the Georgia Aquarium - and various parenting workshops. There are some great people who work with the Georgia chapter - people who celebrate their autistic loved ones - and I am proud to call them my friends.
Primarily, I volunteer with Autism Speaks because - for the time-being - I am my son's voice. I have to make him a part of the conversation. Like it or not, Autism Speaks is where the conversation is at right now. They have the ear of Washington. Even though some adult autistics - like Ari Ne'eman of the Autistic Self Advocacy Network - are gaining roles within governmental advisory councils, Autism Speaks still holds the cards. If I want Jack to be part of the conversation in a way that I feel is respectful to him, I must insert him into it. While I don't agree with all that Autism Speaks says and does, I am my son's voice. I speak for him. I want his voice heard.
And in the same way that many within Chick-Fil-A took the stand that Truett and Dan Cathy did not speak for their views on homosexuality, so do I believe that no one person within Autism Speaks does in fact speak for the whole.
And with that said, I read the above statement by Autism Speaks co-founder Suzanne Wright (which you can read in it's entirety here) yesterday and simply shook my head. Yesterday, Autism Speaks did not speak for me. They did not speak for Jack.
And I was disappointed. I was, because after my post yesterday about turning the general conversation on autism away from fear and misunderstanding, there's this...
Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
This is autism.
Ms. Wright, this is most certainly not our autism.
You might call me delusional, but I believe - I firmly believe - that if I allow myself to believe that my son's life and mine are ones of despair that it will come to pass. It doesn't matter if he's on the spectrum or NT...if I feel like my life is over, it will be. I choose hope.
Do I live in fear? Not of my son. Not of his future. Not of his potential and what he might become. What I fear is the attitude that other's take towards him when all they are fed is rhetoric such as this. I fear that reaction. I fear the stylist who backs away from my 4.5-year old in fear because she is afraid that he will hurt her.
Yes, we get less sleep than we'd like. We have less money than we'd like. We manage medications, therapies, IEPs, social skills groups, specialists, and a dizzying gamut of other aspects of parenting special needs children.
And it is also true that we wish that the powers that be in Washington and state capitols would unlock waiver waiting lists, implement state and national-level autism insurance reform, and bolster funding for special education because - damnit - it's what our kids deserve.
And it is true that there are days that we break - like all parents - and find ourselves at the mercy of our own tears.
What is more true? I see optimism and hope and understanding abound more from the average autism family than I did in the year Jack was diagnosed. I see parents standing up when their children are dehumanized and treated as something less. I do not see families and autistics merely existing; I see them thriving.
And we have a long way to go, but I see a future full of possibilities for employment and independent living that never before existed for individuals like Jack. I see a life for him in which he finds fulfillment and happiness. I see a life in which Jack can feel happy and secure that his parents love him and support him just as he is. I see a life for him of loud hands and grand prospects and love. I see us planting seeds for self-advocacy in him that will one day blossom. I see him taking the torch from me - in his own way at his own time - and telling his own story. I do not see fear; I see hope.
And then, there was this...
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
Well, Ms. Wright, on this we may have to agree to disagree, because I know that - for some outsiders looking in - it will be difficult to convince you that my son's life is anything but tragedy. However, have I "lost touch" with my son?
Yesterday, at Dr. DP's office, Jack and I were sitting with the social worker as Jack was making little noises, which I mimicked back to him. I explained that this is our way of having a conversation. We engage in that back and forth of him saying a script or making a noise and I repeat it back. We can go on that way for quite a while. The social worker was delighted, and that's because she gets it. She gets that it's not about the words; it's about the connection. It's about being present with my boy at that moment at his level and sharing in his world. All autistics can do this; I'd argue that all of them try to engage us this way. Sometimes, we just have to be open to the idea that conversation and connection can look different from what we expect and still be just as meaningful.
Has my son "lost touch", Ms. Wright? I think not.
And I'd challenge you - Ms. Wright - to look at the humanity of these images...
...and tell me this boy has "lost touch". He's not alone. The humanity of every autistic is there. The connectedness is there. The relationships are there if you have the courage to think beyond our narrow version of what "normal" should be and broaden our perspective to the beauty that exists outside of the box.
So no, Ms. Wright, you did not speak for me yesterday. You did not speak for this boy. You did not speak for the thousands upon thousands for whom our organization represents. You also showed that the autism - one of despair - you see is different than what many of us see daily - one of hope.
Ms. Wright, that may be how you view autism, but it is dangerous and misguided. It leads to fear. It doesn't speak for us.
This isn't our autism.
