inflection point

~

It’s not usually a good start to a relationship by showing up to your first meeting with a list of problems. But I thought perhaps if I also came armed with ideas for their resolution, maybe it wouldn’t be so bad.

Within a week of taking over as president of Autism Speaks, Liz Feld asked me to sit down and talk. I was thrilled to have the opportunity to get to know her, to hear her perspective, and to exchange ideas about what the foundation can be doing, not just to best help our families in the here and now, but to set up a sustainable model for change. Additionally, and no less importantly, I looked forward to talking to her about how they can help reach across the divide – sensitize their language, shift their focus, seek the help of far more people on the spectrum.

We were set to meet for drinks. Over three and a half hours later, we’d eaten dinner and worked our way through all of my notes.

I told Liz that I don’t envy her position. I felt badly saying it – afraid that it may sound like “Hey, welcome, and man, this job is gonna suck,” but it’s true. She is coming on to steer an organization that has been demonized by much of the community – in some ways justifiably so and in some others based upon old perceptions that have yet to catch up with reality. Either way, it’s a tough role to step into.

We talked a lot. Liz was very forthcoming and extremely open. She agreed with much of the constructive criticism that I offered and talked about some of her plans to address the issues at hand. As always in this type of situation, I struggle a bit with how much of the conversation to disclose. I never want anyone to feel that if they sit down with me over a burger, they’ll see every word in print the next morning. For that reason, I will do what I usually do and focus mostly on what I had to say to her. Please don’t take that to mean that our conversation was one-sided. It was a dialogue in the truest sense. She asked probing and thoughtful (and thought-provoking) questions and she did not shy away from the tough stuff in any shape nor form. So here goes.

First and foremost, we talked about the fact that autism is one word, but there is no one autism. This isn’t a new concept for Autism Speaks. Geri Dawson says it often, but I thought it was a good place to start when talking about our community. One of the toughest things to understand is how differently people are affected by autism. Liz acknowledged what we all know – that the organization was founded with a laser focus on those who are severely affected. In time, they’ve tried to evolve to become more inclusive of the entire spectrum. In many ways they have, but there is far, far more work to be done.

We talked about the demonization of autism. About the use of hyperbole. About dramatic missteps like the I am Autism Video years ago. About the challenge of trying to convey the experience of those who are severely impacted to the rest of the world without damaging the psyches and destroying the self-esteem of those who live with autism every day. I shared my friend, John Robison’s words –

For many of us on the spectrum, a parent’s stated quest to ‘cure’ autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad and half Mom. So when Mom tells me Dad is no good, what is she saying about me?

If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.

There is nothing wrong with wanting to take away a disability. That’s a great goal and one that I fully support. What’s wrong is making something out to be ‘bad’ and then failing to take it away; leaving us with the ‘bad’ irrevocably bonded to us.

Moral judgement has no place in the world of remediating disability.

I told her how important I think it is to be cognizant of the words they choose. That ‘cure’ and ‘disease’ are as inaccurate as they are divisive. I offered ‘remediation of disability,’ ‘mitigation of challenges’ and ‘developmental disorder’ in their place. We agreed that the differences were far more than semantic. That sensitivity to both poles and everyone in between is paramount if they are to truly represent the entirety of the community. And then we delved into what it means to do that.

I told her that they desperately need more people on the autism spectrum in their organization. That John Robison’s role is not to be discounted, but his presence on their scientific board was simply a good beginning. That as much as I would never trivialize his role there, it’s not hard to understand why self-advocates feel comfortable calling him the token autistic at the organization. I told her that the mantra of the self-advocates, “Nothing about us without us” should be heeded. That not only was it egregious to purport to represent people without their participation, but that by failing to fully include them at every level, they are missing a vital opportunity to tap the best resource we have for understanding the experience of autism and the needs of those on the spectrum – autistics themselves.

We talked about their website – an absolutely fabulous resource – stocked with information, tool kits, guides to local help. We also talked about what I think it’s missing – forums for autistic kids, teenagers and adults to connect, to share wisdom, to share their experiences. To talk in the first person about autism, rather than the third.

I suggested that she reach out to self-advocates for help. That she ask THEM the questions. How can we make this better? I offered to make connections and she eagerly accepted.

We talked about the co-morbid medical conditions that we see so often with autism. We talked about the GI connection, about the rise in allergies and the implication of environmental stressors. We talked about the misperception that they are stuck on genetics and don’t study environmental factors or seek to understand the physiological causes and connections to autism. We talked about the work of Martha Herbert at Harvard and how many people have no idea that she is connected to the foundation, and has been for many years.

We talked about community service and how much more of their funding it needed. I told her that while we all know that Autism Speaks was founded as a research organization, there’s no denying that their rapid growth and enviable visibility have led them to now garner and control the lion’s share of autism donations (in some cases diverting money that in the past would have gone to local service organizations) and that there is therefore a responsibility to the community to funnel more of it back to providing direct services to those on the spectrum. I told her that I think they can do a better job of talking about their political advocacy efforts, from local to state to federal levels, the results of which institutionalize a sustainable societal service model rather than attempting to fund one service at a time through donations. But still, we both agreed that there is far, far more that needs to be done.

Oh geez, I’m running out of time. Three and half hours is tough to condense.

We talked about the military, about the needs of teens and adults and teens as they become adults. We talked about the ‘cliff of twenty-two’ – the age at which school systems are no longer responsible for our kids and families are so often completely lost as to how to provide the care their now-adult children need. We talked about the desperate need for our President to acknowledge our community and to use his podium to help advance what is undoubtedly the next wave of the civil rights movement. We talked about the need for uniformity of services across zip codes, the need for a federal insurance mandate, the fact that no one’s going near anything with the word mandate in it. We talked about housing and employment and transportation. We talked about the desperate need for ABLES accounts. We talked about getting the government to fulfill its promise to fully fund IDEA – or at least come a hell of a lot closer than it has so far. We talked about ensuring that people on the autism spectrum have the ability to live full, productive lives. That there is not only a moral imperative to work toward that goal, but that it’s simply smart fiscal policy. We talked about the importance of early identification and intervention. We talked about vaccines. We talked about the aggressive schedule and the aggregate effect of so many at once. We talked about regression. We talked about salaries and rent. I told her that people still think they are in some palatial space on Park Avenue and that while the community may gripe as soon as the 990 comes out, with all due respect, considering the time that she will put into this job, she will likely make less hourly than our babysitter. We talked about fundraising events – and how they desperately need to revolve around – and include – people with autism. That glamour is necessary to bring in funding, but that it can also serve to reinforce the disconnect that families feel from the foundation. We talked about the stark difference between puzzle piece recognition and true autism awareness.

There was no topic avoided. There was zero – ZERO – double talk or talking around issues. There was nothing that Liz would not address honestly and openly. I really have no choice but to wrap this up as I have to get to work, but there was far, far more to the conversation. And it was indeed a conversation. Liz made it very clear that her door remains open and that she looks forward to continuing the dialogue.

There’s so much more to say, but I am completely out of time, my friends. The bottom line for me is this – Autism Speaks has done a lot of good in their short time in existence. They’ve grown at an astounding pace – one that made the pains of that growth nearly impossible to manage. Despite their efforts to evolve at the speed of light, they have stumbled in many ways, but none that Liz didn’t acknowledge and seek to learn from. I have made a choice to remain engaged and involved with them. I believe that with or without me – with or without you – they will still be the face of autism for most of the country, if not the world. Given their platform, they will be the ones who have the power to shape public perception. I’m not willing to let them do that without contributing to the conversation.

Despite huge accomplishments and contributions to our community, they have a lot to prove to many of you before you will trust them to get it right. I get that. Truly, deeply, I get that. I simply hope that you will give them – and Liz specifically – the chance to earn that trust.

Ed note: I left her with the following posts – 

What I Heard

The White House – A Spectrum of Words

Awareness 2012

Dear Mr President

Middle Ground

Our Autism

Ed other note: Apologies, but I’ll have to come back later to provide links within the body of the post. 

24 thoughts on “inflection point

  1. I am in awe of you once again! This is an amazing accomplishment on your part. People listen when you speak (I know I always do).

    Love you,
    Mom

  2. I think YOU need to work for Autism Speaks! You would be an amazing asset to that organization! I’m sure Liz was thinking the exact same thing while sitting across from you! So glad you are our voice during this transition, I’m sure Liz heard all of us through you. Thank you!

  3. I’m awestruck. What an amazing conversation that must have been. Thank you! And so glad to hear that the door is always open.

  4. Sounds like an awesome meeting! One thing to consider (and I know you will as you obviously give great thought to this): a civil rights movement is already underway for ALL people with disabilities…on this we need not be disability-specific. Like coming to realize the common ground between those living on various places along the autism spectrum and the inherent value in including everyone’s experience, there is much to be gained in joining in conversation and advocacy across disability lines. Getting communities and systems to become responsive to varied human experiences and to value every individual is a vision shared by many. We honor and reflect it when we come together.

    • Michele, we did discuss the context of autism within the greater disability community – by no means did I mean to imply that ‘the next wave of the civil rights movement’ was autism specific. Thank you for pointing that our. I couldn’t agree more.

  5. There’s always a little jolt of energy that runs through an organization when new leadership takes over. We’ll have to see what she does with her time now that she’s there.

  6. THANK YOU for all the time & energy you put into making the world a better/more accepting place for our kids!

  7. thx for relating this disscussion. i get that some people disagree with certain aspects of autism speaks…but to me, it always seems like they are wanting to grow in the right direction, and that’s really all that matters. you can’t ask for more than that, it’s a sign of organizational maturity. and i like all that you brought up with her…for me, in particular, the comorbids have been a struggle, so i’m glad that was discussed.

  8. Jess – Thank you so much for your thoughtful meeting and post. I personally would love to see more of a partnership between Autism Speaks with their research science based and Autism Society with their community based programs.

  9. Awesome post Jess! I just wrote yesterday about how I demonized autism for so long. It’s taken me such a long time to get here from there. to see my boy for the wonderful complex boy he is and to see all the parts. like looking at the guts of a clock.
    thank you once again for going to bat for ALL of our kids and the adults they will be some day. One of my boys is almost there.
    How do you get involved with so much?

  10. You have no idea how much I hope that this is the start of things getting better. Autism runs in both sides of my family. I have it and both of my children have it. It is literally part of everything I am. I’m also old enough to remember the bad old days when no one knew what it was and therefore people with autism were either hidden or autistic traits were seen as personal defects.
    As such, I have a different perspective than many younger self-advocates. Autism Speaks gave us a place at the table in the disability rights movement that we just plain didn’t have before. They took autism from an obscure entry entry in psychology textbooks to a household word. This is such a huge accomplishment that it can hardly be understood without having experienced how it was before. It’s a true paradigm shift.
    The price for this seemed pretty high to me. Besides what you named, the acceptance of snake oil salesmen selling “cures” is a major problem. But, the thing that has always bothered me the most was the eugenicists. The idea that people who wanted to wipe out autism by preventatively killing them before they were born were not only accepted there but funded to reach their goals frankly scared the crap out of me.
    I really hope that they can lead the way by working with local efforts and adult autistics in the near future.

    • I’d rather deal with someone who has never heard of autism than someone who knows about it only from Autism Speaks. It’s nice to know I’m autistic, but I feel lucky that I wasn’t diagnosed younger. I was old enough to feel fairly secure in my identity, and have a healthy scepticism about what they said about autism.

  11. Mahalo for doing this and for all you do to help unite the community! I have stepped away from commenting on so many blogs to focus more on my health and my family, and to continue focusing on bullying. I still subscribe and I always will, but I haven’t had as much time to read lately. Still, I am glad you are here writing the words many of us think, but do not express as eloquently as you.

    Aloha and blessings to you and your wonderful family!

  12. Wow, what struck me as I read your post was how much progress has been made on various fronts in the 10 years since my son was diagnosed. Yes, we have a long way to go but it’s important to remember how far we’ve come in a very short time.

    The dark days/months of early diagnosis were some of the most horrible of my life. I literally had nowhere to turn…my pediatrician, who I had previously trusted, was no help. Relevant books were nearly non-existent. And the only stuff I could find online was arcane, scary medical stuff. Luckily, slowly, I was able to cobble together some resources to help my son and get us on the road to where we are today, which is in a pretty darn good place (again, wow, I could not have imagined typing this back then!).

    I cannot tell you how reassuring it is to know those facing diagnosis these days don’t have to face such a bleak and empty void. Of course the early days are as difficult as ever to cope with, but the fact that numerous resources are readily available is Amazing with a capital A.

    Top among those “numerous resources,” in my book, is you. Thank you so much…for paving the way and continuing to try and make it smoother for those who follow.

  13. Thank you for addressing questions I have had about Autism Speaks. I captain and I walk and I collect and it is good to have back up knowledge.

  14. I agree with all of your points. At this time I do not fundraise for Autism Speaks, but that could change if I see some of the changes that you’ve outlined. I sincerely hope they do sit-downs like the one you had with self-advocates.

  15. I appreciate the intent, but… You say they have done “so much good”. No, they haven’t. They have done immense harm. Yes, they’ve grown quickly; so does cancer. Until they are something other than a propaganda organization devoted to making money proposing that I and people like me should all have been killed, they aren’t just not helping, they’re hurting.

    Progress has been made, but it’s in spite of them, not because of them. If they hadn’t shown up to coopt language and go around erasing us and telling people that they were speaking for us because we were not worthy to be permitted to speak for ourselves, we would be much, much, better off. Instead, they’ve siphoned money that could have been spent on goals other than killing us.

  16. Just catching up, My Dear.

    Thank you.

    Thank you.

    Without this dialogue, we cannot expect change for anyone regarding any practices going forward.

    You must know that we love you and truly appreciate that this journey you are on is simply meant to be – yet is not without demands that most of us will never truly understand. You represent a diverse community. “autism is one word, but there is no one autism” – just as there is no one perfect solution, no singular strategy, no easy quick-fix.

    Thank you for devoting your time and energy to being a part of the discussion.

    Love you,
    R

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