autism speaks – and listens

**

Some time ago, I was seated next to Mark Roithmayr, the president of Autism Speaks at an event at which I’d been asked to speak. It was only the second time I’d ever met him, but he greeted me as though we’d known each other for years. As the evening’s emcee made his way to the podium, we found our seats. Mark sat down with a stadium-style soft pretzel on his plate and I eyed it jealously. He saw me looking at it and tore off a piece and handed it to me. When I then ogled the glob of mustard on his plate he pushed it toward me and gestured that I should feel free. I felt completely inappropriate dunking my pretzel in his mustard. I mean, for heaven sake, who does that? But with an elbow to my ribs he whispered, “Go ahead. We’re family here.”

A few months ago, Autism Speaks put out a video that sent many of us in the autism community into a tail-spin. It was produced in a way that obviously sought to elicit shock and awe from its viewers. It very clearly demonized autism and for many of us, its methods were simply unacceptable.

When the video came out, I was angry, I was hurt and I was tempted to follow many of my friends who had long since turned away from Autism Speaks completely. But Mark’s words came back to me. “We’re family here.” So I picked up the phone and I called him. Family doesn’t turn away when feelings are hurt or mistakes are made. Family sticks around and works to make things better and to make things right.

I can only imagine how many calls went into him that day, and I was grateful that mine was among those that he returned amid the frenzy. We spoke at length and I did not hold back. I told him that I felt a responsibility to talk to him about how I felt. I told him that I was frustrated and that I was running out of ways to apologize  for the organization to my peers, not to mention that I was losing the energy and the desire to do so.

Mark and I talked a great deal about the wounds in the autism community. We talked about the anger toward Autism Speaks and the ire that they so often draw from the very people who they purport to represent. We talked about some of the entirely justifiable reasons that so many of my fellow parents and advocates had divorced themselves from them.

We talked about the video. I told him that I firmly believed that if someone with autism had been on their board, the video never would have been released – or at the very least would have been released in a very different context. I told him how frustrated I was that that was not the case.

Mark listened – as he always has. He responded thoughtfully and respectfully to each and every point that I made. And he assured me then that much of what we discussed was already underway.

Yesterday morning, I couldn’t have been happier to hear that my dear friend, John Robison had accepted the invitation to join Autism Speaks’ Scientific Advisory and Scientific Treatment Boards. I trust John. I trust his voice; I trust his character; and I trust his judgement.

I wrote to Mark upon hearing the news.

I am thrilled to hear that John has signed onto the Scientific Advisory Committee. This moment has been a long time in coming, and as I’m sure you remember from our somewhat emotional conversation on the topic some months ago, I couldn’t be happier about your choice. I have a great deal of confidence in John and I don’t doubt for a moment that he will bring a highly valuable perspective along with his wealth of knowledge and experience to the role.

Autism Speaks has the power to do so much good for so many. My greatest hope is that John’s voice will be heard and respected on the board and that his presence and influence will be able to help heal some of the deep wounds in our community. This a great and important first step toward creating a more inclusive organization that truly understands and respects the wide variety of perspectives of those on the autism spectrum and those of us who fight to give them a better life.

As always, I am grateful for all that you do for our kids.

Like all of us, Autism Speaks is a work in progress. It is a living, breathing organism – and it’s fallible. John’s appointment isn’t a magic elixir. But, as I said to Mark, I do believe that it is a great first step.

And above all it proves to me that Autism Speaks is not just speaking, but listening. Because that is what family does.

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28 thoughts on “autism speaks – and listens

  1. I also hope that you feel a sense of pride in what you did to get this underway. Mark listened because you spoke! You have his ear and so many others because you listen and then you speak!

    Love you,
    Mom

  2. Yes, this is indeed wonderful and overdue news. But coveting other people’s food? I think there might be a social story for that! ;-)

  3. This in indeed great news about John Robinson and Autism Speaks. Good for you Jess for picking up the phone and expressing your opinion to Mr. Roithmayr, and good for him for listening to the community.

    The deep divides in the autism community have always frustrated me. We are all struggling — to greatly varying degrees — with the issues presented by autism. We all want the best for our children. I am comfortable with my opinion that AS is an effective advocacy organization for my child. Granted, my child is on the much milder end of the spectrum. If I had a non-verbal, self-injurious child that withdrew shortly after being vaccinated, I might have a very different feeling about AS.

    Still, no matter to what level our kids are affected, we parents in this community all have so much in common. This site has taught me that as much as anything. We should be able to agree that an organization that has been effective in helping to pass insurance reform legislation, that has raised millions of dollars for research, that is gathering genetic data on thousands of kids, can be a positive force in this community. Sure there have been and will continue to be missteps.

    I have met several AS speaks employees over the years. Some were event organizers, some expert fund-raisers, some seasoned non-profit executives. Some of them were very directly touched by autism and had every ounce of the compassion you’d expect. Others had no direct connection to autism (although many had ben touched other areas of the special needs community) but they never failed to exhibit that same amount of compassion. None of the AS people I’ve dealt with appeared to treat it as just a job. They had made a conscious choice to work in this area and were doing their best to make a difference. I think they have — not without mistakes mind you — and hope the community as a whole will allow them to continue to do so.

  4. I’m with you. Make changes from the inside. One voice at a time. It’s not fast. It’s not easy. But I’m glad you stuck with it. And remembered the kind words to build a relationship on (’cause that’s how it happens) instead of the hurtful words.

    Oh, and, I LOVE soft pretzels and mustard. Pass it down, please.

  5. As the mom of a Vaccination injured, non-verbal, self-injurious child I can say AS just doesn’t do it for me anymore. I used to be a devoted fund raiser who raised thousands of dollars. All that effort and I’ve (we’ve) never felt that AS did anything other than ask for more money.

    AS’s payroll is insanely high!!! The highest ranking official there makes over quarter of a million dollars a year and in NJ there are charities in NJ who operate on less than that and provide more than AS ever has to our community. AS took 55 million dollars out of NJ last year alone and they have only put back PENNIES of each dollar.

    NJ’s rate is 1 in 91….that’s NOT ENOUGH to give back pennies when we are so obviously in need to help these families have options for their children. NJ is cutting funding everywhere and some of these organizations need to focus on the immediate needs of these families. It may sound selfish but right now I’m not terribly concerned with what caused it; I need help dealing with my non-verbal child who has severe “gut issues” and self-injurious behaviors. I need help keeping my family together and finding a way not to lose my husband in all of this because we are after all the backbone of my son’s life.

    Why isn’t AS working to put support groups into place everywhere they host a walk? Why aren’t they lobbying for not only an insurance bill that covers ABA, OT, PT, etc. but also family (sibling) and marriage counseling in that same bill? My husband and I have vowed to each other not to become part of that 80% divorce rate statistic but many others have already gone that way. Our kids need intact, functioning families divorced or not to thrive and I would like to know what Autism Speaks is doing to ensure that?

    Where are the trainings to teach parents, teaching staff, etc. how to deal with behavior problems, hygenine & sexuality (as some of these kids hit Puberty), IEP advocacy training on rights & realistic expectations, estate planning since we won’t live forever, etc. Where are the social/recreational opportunities that so many of these kids and their families need because they so often face ridicule in their own communities? Our families have immediate needs and I see it everyday where moms are just so overwhelmed and reaching out for help but their cries fall on deaf ears. I’m not deaf but I also can’t do it alone!!!

    I would love to have sat next to Mark Roithmayr or John Robison for a few minutes and have had the opportunity to share my feelings with them too. Heck I’d drop everything I do on any given day and fly to the ends of the earth to have that opportunity. Simply because they do have massive resources that could serve our children so much more effectively than they do now. Please Jess if they ask you who they should speak to for a parent’s point of view send them in my direction. I know countless families in addition to my own here in NJ who would love to have a word with them.
    :) Mary

    • mary –

      thank you for your comment. you make some good points here, and some of them are also issues that i’ve raised with many folks within AS as well.

      above all, i agree that they should put more money back into the communities that support them. (i haven’t been shy about saying that either – that one was a letter AND a phone call .. lol)). but i do think it’s important to note a couple of things on that front in order to put their work in context.

      autism speaks was founded less than five years ago to fund research and raise awareness. as the organization grew and merged with others, they were able to broaden their focus on advocacy efforts, bringing governmental attention to the cause and driving vital legislation to address the growing needs of those with autism.

      in 2007, they began the community grant program to fund services and provide resources on a local level. only two and a half years old now, that program is still essentially in its infancy. to date, it has paid out just shy of $2M.

      when i began this journey, it was autism speaks that i turned to for information. their website is FULL of tools (far more now than then!) like the 100 day kit (a roadmap of what to do in the first 100 days after diagnosis), the school community kit, the video glossary, a state-specific family resource database, a resource library, etc etc. i’d urge you to take a tour through their website and look at the family service and resource pages.

      http://www.autismspeaks.org/community/family_services/index.php

      http://www.autismspeaks.org/community/resources/index.php

      at this point the community piece is still a very small portion of what AS does, and i do hope that they will continue to grow their commitment to providing local resources. in the meantime, i have chosen to to splinter off some of my own fundraising efforts to help support our local grass-roots organization. i also helped to get them involved in the grant process. incidentally, if you have a program in your area (or want to start one), you can very easily apply for a grant. all the info is on the website. as i understand it, the proposals are reviewed by a panel that includes parents of children on the spectrum.

      so yes, i too wish they could do more or do some things differently. but for me, that doesn’t take away all that they ARE doing, nor does it mean that we can’t work together to try to influence their future direction.

  6. I am on the Board of Directors of one of the ARC’s in MA and we now have 2 adult “consumers” (that is the term we use for people who recive our services) on our Board. We had our first meeting last night since they were invited to join and it was wonderful. They made real contributions to our discussions last night and will bring a very important perspective to our work. I’m sure the same will be found at Autiam Speaks.

  7. Congratulations! I had every confidence that things would work out driven by your infectious persistence, enthusiasm and dedication to move things in a better direction. So glad to hear that John has a seat at the table!

  8. Wow, such great news. And I can’t help but be inspired by one of his brother’s book titles, fancifully adapted in my mind for John’s new role — “A Woof at the Table.” :)

  9. I love how you work on behalf of so many who need your voice. You have a very special gift. It is also so very important that the “AS” people listened, for that also speaks of their quality as well.

    On a lighter note, you never ate well unless you ate off my plate as you were growing up, so it is no great leap that now you will eat off of anyone’s plate.
    Love you,
    Dad

  10. “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has” – Margaret Meade.

  11. I am new to AS and am heading up a team for the North Jersey walk. Right now we need an advocate to help us. My granddaugther is on the autism spectrum and her mom, my daughter, and I are not pleased with her most recent IEP (I take care of my girl quite a bit and am very involved with her schooling). They are taking away services by saying she didn’t regress over the winter recess. She is not severe but is definitely textbook in many ways.

    My daughter wants to move to our town where there is a good program but is being told there is no room in the class and a waiting list for children aging out of early intervention. Uh, isn’t it law that the child’s needs have to be met no matter what it takes?

    Any suggestions for an advocate who will not charge us exorbitant amounts? We really have no extra money. Heck, we don’t have enough as it it but will do about anything for our precious girl.

  12. I guess I am from a different camp–but I found the video hit so close to home for me. My son wades in the deep end of the autism pool–age almost 9–mostly nonverbal–very destructive–very hard on a daily basis. I did not see the negative portrayal that others gleaned from the video. Instead, I saw a realistic portrayal of the daily agony that autism causes in so many lives. I thought the second portion of the video was hopeful and positive. I’m interested to see how others feel…but I wonder if one’s reaction to it depends on how severely the child is affected?

    No organization is perfect–but I hope A.S. will strive to limit their overhead and give back as much as they can.

    • zmom – a number of my friends loved the video and like you, believed that it was an accurate portrayal of their experience. to me, it was one more perfect illustration of just how many different perspectives there are in our community and how difficult it can be to make us all feel represented.

      what struck me the most was when a friend with a teenager with autism said to me, ‘my god, if he had seen this, he would believe every bit of it was his fault – from my divorce to our struggles with money’.

      how could a kid (and one who struggles with social understanding!) possibly separate autism from himself in that video? in the case of my friend, as with so many others, her son is finally beginning to understand and accept his autism. he is beginning to reconcile the fact that it is part of who he is. how do you then explain to him that ‘part of who he is’ created all that damage, is ominous and menacing and is meant to be defeated by an army?

      so, while i absolutely understand how a parent might relate to that video, i think it’s irresponsible at best to present it as a singular view when so many young adults and adults who are very differently affected share the exact same label.

      incidentally, I think it’s an issue that ultimately comes down to the DSM – as i think the problem is really that so many different disorders are lumped under the same umbrella, but for now, that is what it is and we all huddle here together – just one big, dysfunctional family :)

      ps – i get into the detail of how i felt after watching the video here if you’re interested ..

      http://adiaryofamom.wordpress.com/2009/09/25/middle-ground/

  13. When my daughter was diagnosed with autism, and I didn’t know what to do, I turned to Autism Speaks. I ordered the 100 Day Kit, and searched their website for resources in my area.

    Soon after, I received an email from Autism Speaks seeking volunteers for a research study on the infant siblings of children with autism. The Infant Brain Imaging Study, funded by the NIH and Autism Speaks, was studying early brain development. The goal was to improve methods of early detection and intervention. To participate, I needed to travel to a neighboring state with my younger daughter when she was six months, twelve months, and twenty-four months old, where she would undergo hours of developmental evaluations and MRI scans of her brain. I was terrified, but I knew immediately that I wanted to be part of this. Because maybe – just maybe – they would learn something that could make a difference. And maybe – just maybe – some mom wouldn’t blame herself, as I had done, for missing signs I should have seen. When I drove home after the six-month-old exam, I did so with the greatest pride, confidence, and hope I had experienced at any time since we received the diagnosis. It would not have been possible without Autism Speaks.
    Autism Speaks has its faults, as most large bureaucracies do. But I can tell you from personal experience, they also have a lot to offer.

  14. Pingback: What I Heard « Autism Speaks Official Blog

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