47 days


Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.

~ Barack Obama

I am grateful that Liz has begun the process of reaching out to self-advocates. I am hopeful that through her conversations, the gap can be bridged, changes will be made and that when Autism Speaks it will be autistic voices that we hear.

~ Diary , August 2012


We lament the pace of change. It simply doesn’t happen fast enough to satisfy our hunger. Call us impatient. Go ahead, we’ve been called far worse. But we need the world to be different NOW. There is no time to wait. 

We scream and shout and we talk and cajole and we negotiate and politic and then …

And then we climb into bed at night and wonder if all that we did, all that we do, was and is for naught. We wonder if we stood and shouted into the air yet again, the wind taking our words before they could ever dream of being heard, having impact, making something – anything – different for our kids.

We cry and we fight, we scratch and we claw and we wonder …

We wonder if the very people who are meant to represent us, to support us, to help us, are really representing or supporting or helping us at all – or if perhaps, despite all the good they might be doing, if they’re also part of the problem.

We shake our heads (and our fists) and wonder how they could be getting it quite so wrong.

So wind or no wind, we keep talking. And we talk and we talk and we talk. And we listen. And we ask questions. And we offer solutions, suggestions, different paths. Real, solid alternatives to what we know isn’t working. Because banging on the walls and yelling isn’t enough.

And sometimes, the right person listens. If we talk enough the odds are good. 

And we begin to hear not just platitudes and empty promises but our words reflected back to us – our ideas winding into strategy and flowing into execution. And we realize that things are changing. That priorities are shifting. That attitudes and organizations and elected officials are listening. And evolving. More slowly than we’d like perhaps, but the monumental changes we seek simply do not happen overnight, no matter how much we may want and will them to. 

And in that moment, that very instant that we see something change, we know that it is possible. We can change the institutions that represent us. We can affect the process.

Autism Speaks put out a video yesterday. It looks different from what you may have seen them do in the past. For one thing, it prominently features autistic adults speaking for themselves.

Are people going to find plenty to take issue with? Yup. They always will. Autism is far too sticky and messy and God, it affects us all in so very many different ways – I can imagine almost nothing that will please everyone in one fell swoop. But is it a hell of a closer? Yup. Is change happening? It is.

The other night, I listened to Liz Feld, the President of Autism Speaks, speak to a room full of some 220 people. She talked about autistic young people transitioning to adulthood. She talked about transportation and housing and employment. She talked about bullying and respect. She talked about research as an avenue to make life better – to mitigate the challenges of those on the spectrum. She talked about returning money to the communities from which it comes – supporting services for autistic individuals and their families.

Speaking to her at the end of the evening, she said, “See, Jess? I listened.” I told her I’d heard it. That I’d heard my words reflected back to me.

She looked at my friends Judith and Jersey who were standing with us. “She taught me,” she said, “that our words matter.”

I was heartened.

I felt empowered.

I felt like the words, the emotion, the passion of so many who stuck around and continued the conversation mattered.

Liz is listening.

Autism Speaks is listening.

And changing.

And I am so, so grateful.

Because they have a voice. They have a platform. They have political connections and they have resources. And we need them.

In 47 days, this nation will elect or re-elect its next President. We have GOT to part of the conversation. We are too big and our kids are too important to be ignored. We need to – by God we HAVE to – work together to become an unavoidable topic in any political debate. From town councils and school boards across the country to state legislatures and Governor’s offices. From the House of Representatives to Senate to the Oval Office. WE MUST BE PART OF THE DEBATE.

When candidates talk about so-called entitlements, WE must remind them that behind that now dirty word and political hot potato are programs with very real impacts on very real lives. WE must remind them that it’s not just morally imperative but fiscally responsible to ensure accessible employment opportunities, to allow us to save for our own children’s futures, to support education and housing and transportation that will enable them to grow into not just fulfilled human beings but productive members of society.

It is up to our entire community to remind them that individuals with autism matter.

What will YOU do in the next 47 days to make us part of the conversation?


More on becoming engaged in the political process and what I believe we need from our politicians:

My letter to Massachusetts congressional candidate Joe Kennedy

My letter to the President

16 thoughts on “47 days

  1. How much do I love you? Your voice in this and all things is so important. Wouldn’t want to run for office any time yourself, would you? Because I will move back to Mass. just to be able to vote for you. Thakns again for this and everything, my friend!

  2. Time for all of us to be part of the conversation with all the forms of communication we have.
    Many of us fear change, but this is change I can embrace. I’m so glad she listened to you.

  3. On my wall, I just re-posted this….and the fact that I hope to be just like you when I grow up! You continue to inspire and encourage me!! Thank you. I hope your sore muscles are healing….

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