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