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Wednesday, November 13, 2013

I resign my roles at Autism Speaks


Earlier this week, Autism Speaks founder Suzanne Wright published an op-ed piece that laid out her views on autism, and what we should do about “the problem.”  Those of you who follow my writing know I am a strong believer in science, and the promise of new tools to remediate the ways autism disables us.  However, there is a vast gulf between the tone of Mrs. Wright’s words and my own.  I believe we see the situation rather differently.  As an autistic person this is a time when I must give primacy to my own life experience and feelings.

I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches.  It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.

Many autistic people are aware of this dichotomy.  Some of us feel “totally disabled” and others feel “totally gifted.”  Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment.

Consequently, I support the idea of changing society to make it more accommodating for people who are different.  I also support the idea of developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people.  I know how hard life is for some on the spectrum, but I also see the gifts other autistics bring.  Both are touched by autism, and it's part and parcel of who we are.  That's why we face such a difficult challenge, to keep the gifts while relieving the suffering.  It's immeasurably harder than simple disease fighting.

If I act a bit different because I’m autistic, I think it’s my right to do so without being mocked, bullied, or discriminated against.  At the same time I realize people are people, and if I act like a jerk, I will be treated as one.  I understand I have a responsibility to learn how to behave in ways others will find acceptable or even appealing.

If I can’t do something, and I want to be able to do it, I feel it’s my right to ask for help.  At the same time, I recognize that society must be there with the tools to fulfill its part of the bargain.

Not everyone wants help with disability and suffering, and I support their right to exist and be accepted just as they are.

The point here is that there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect.  Some people want a little help, while others face major challenges. They (and their families) feel great anger and frustration over society’s weak response to their cries for help.  As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has.

Mrs. Wright’s op-ed articulates a view of the “autism situation” that is very different from my own.  She says things I would never say to people with autism and cannot in good conscience stand by. Given her role as leader of the organization, I am afraid it is my signal to exit the Autism Speaks stage. 

I share with you the following letter, just delivered to Liz Feld, president of Autism Speaks.

For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video.  The most recent “Autism Speaks Point of View”  http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.

I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people.  We do not like hearing that we are defective or diseased.  We do not like hearing that we are part of an epidemic.  We are not problems for our parents or society, or genes to be eliminated. We are people.

We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support.  There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful.  We have delivered very little value to autistic people, for the many millions raised.

I stayed on board because I felt the fundraising power of Autism Speaks could be directed toward research and services that would be truly beneficial to people living with autism today.  I felt the occasional public relations gaffe was tolerable if we began delivering therapies that would really help our community.  I expressed my views to that effect in public, at science reviews, and to Autism Speaks staff.

One of the things I’ve said all along is that I believe change is best accomplished from inside, through reasoned discussion.  Recent public statements from Autism Speaks have shown that my ideas have not taken hold among top leaders, despite my best efforts. 

This latest op-ed piece is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.

Autism Speaks says it’s the advocacy group for people with autism and their families.  It’s not, despite having had many chances to become that voice.  Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.

The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community.  Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions.  The priority cannot be autism parents, or autism grandparents.  It’s got to be actual people with autism. 

No one says the Cancer Society does not speak for them.  No one describes the Cystic Fibrosis Foundation as an evil organization.  All that and more is said of Autism Speaks every day.  I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.

Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults.  And the fact is, that is the majority of the autistic population.  I’ve made that point in the past; apparently to no avail.  I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.

Consequently, I have decided to resign from the Science and Treatment Boards, which are my only formal connections to Autism Speaks.  I’m sorry to take this step but I feel I’m left with no choice.

Autism Speaks has a lot of potential with its media presence, public name recognition, celebrity connections and fundraising power.  It could do a lot of good, if directed differently.  I hope that happens one day.

If you want to talk about making meaningful changes within the organization, giving people with autism a substantial voice in your governance, and shifting your focus to one that would truly deliver on the promise of the funds raised, I would be open to the discussion. Until then, it’s time for me to bow out.

Best wishes
John  Elder Robison
November 13, 2013

211 comments:

  1. Thank you for your leadership, John!

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  2. John, I completely respect your decision although it saddens me somewhat that we have lost one of our voices from within (I, too, believe change happens from within). Still, when your voice remains silent you must listen to your heart.

    Many blessings in all your efforts going forward.

    Thanks,
    Dena Gassner

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  3. Thank you so much John. I stand with you 100%. Please continue to make noise against how they are representing autism as loud as you possibly can. The world really does need to be made aware.

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  4. Bravo, John! You're doing the right thing. Thank you for speaking out.

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  5. Thank you for not only standing up for yourself, but by doing so standing up for everyone else! I completely agree with your decision, please continue doing what you do!

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  6. Thank you for trying, John. Your words and actions are powerful. Change does happen from within. Perhaps as those parents of young children will "wake up" as their children get older and the seeds you planted during your time there will grow until they can't be ignored.

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  7. What a tough decision.

    Thank you for your efforts John. Your writing and perspectives have been so helpful and inspirational to many of us.

    Like Karen, I stand with you 100%.

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  8. THANK YOU, John. We do not always see eye-to-eye but I feel extremely grateful to you for taking this much-needed stance. Congratulations!

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  9. Thank for your leadership and honesty. I had the honor of meeting you at an Autism Speaks event not so long ago. I spent that evening telling people how much my views on autism (as the parent of a child on the spectrum) had evolved and hope I was hopeful the organization was also evolving. Clearly it has not and sadly, I am also no longer able to support Autism Speaks. Here are my thoughts on the matter: http://pucksandpuzzlepieces.com/2013/11/13/living-not-existing/

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  10. Well said John. I will share your letter with my friends as well.

    God's speed to you and your family.

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  11. Great decision to leave autism speaks John. Thank you for finally realizing the wrongs of this organization and standing up for the neurodiversity. Now please reach across and join the hands of thousands of Autistic Advocates and their allies to the right thing. Stand up for the Human Rights of All Differently Abled People and help stop the abuse of Autistics. You have a great opportunity here to help make great change. Your presence is wanted.

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  12. Wow. Just wow. You have a lot of integrity.

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  13. Thank you for standing up for my 3 sons with autism.

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  14. John, I admire your integrity throughout this whole saga and wish you could have succeeded in reforming Autism Speaks from within. (I also believe the most effective change comes from within). However, they seem beyond help. You've given them great advice on how to help autistic people and if they won't listen, there's nothing else you can do. Thank you for resigning and for speaking up for yourself and others on the spectrum. I hope you'll continue to advocate and am looking forward to supporting what you do in the future.

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    1. Perhaps John should start his own group called Autism Listens. I know I would support an organization that understands my gifted and beautiful Aspie daughter. She has survived mainly because I have to keep reminding her that Aspergers is a gift that has given her the talent of thinking outside the box. John's representations of Autism in his letter are exactly the understanding I have and I fully support his position. Never liked Autism Speaks. Never liked their message.

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    2. right on!! Autism Listens....I can get behind that! Love you John, let this be a new window of opportunity for you (all of us)

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  15. I fully support your decision, John. WOOF.

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  16. John,

    I am sorry it came to this, but please know that we support you. Parents I know have turned away from Autism Speaks in droves, but we will always stand beside you.

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  17. Behind you, John.

    Craig Evans
    Founder - Autism Hangout (dotcom)

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  18. Thank you!!! We need your voice, you understand what is needed!!

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  19. John, thank you for ... well, you know. You simply, truly, honestly, already know. Many of us already knew that, but with the word choices above, you left no doubt even for the uninitiated.

    Thanks. You rock.

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  20. Thank you for being honest, open and real. You have my support.

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  21. Thank you for being open-minded, honest and approachable. You have my support. +John Elder Robinson

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  22. 100% behind what you have to say..Sorry to see you leaving ..completely understand your reasoning..I am sharing this on Facebook..Continued success in your future endeavors..

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  23. Bravo! John. As usual, your writing expresses well the reasoned approach you took to try to effect change from within and your realization that it was not working.

    I applaud both your effort to reform a flawed organization and your decision to stop beating your head against the brick wall of its misguided positions.

    I'm sure you will feel much better as soon as the headache goes away, and it sure is nice to have a united front.

    Autism Speaks does not speak for me.

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  24. Thank you John - for your honesty, integrity and measured approach.

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  25. I stand behind your decision. Good work!

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  27. Thank you, John. Your efforts and your advocacy are so appreciated.

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  28. Thank you for speaking your views and standing for them. As a mother of an adult son on the spectrum I understand the dilemma you have been under. It is sad that the world wants to speak for all of you but won't listen. Stand tall.

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  29. Thank you for taking this stand. As an autistic mom of an autistic son, AS does not speak for me or any other parent, educator, or autistic I know. They continue to isolate themselves through their hateful rhetoric and public missteps, the most recent of which was allowing the Judge Rotenberg Center a spot on its "Resource Walk" at the DC Walk for Autism.

    Being denied the voice of a powerful witness and advocate like yourself will hopefully help divert attention and funding away from them toward groups that better represent and serve the autistic community.

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  30. Thank you for taking this stand. As an autistic mom of an autistic son, AS does not speak for me or any other parent, educator, or autistic I know. They continue to isolate themselves through their hateful rhetoric and public missteps, the most recent of which was allowing the Judge Rotenberg Center a spot on its "Resource Walk" at the DC Walk for Autism.

    Being denied the voice of a powerful witness and advocate like yourself will hopefully help divert attention and funding away from them toward groups that better represent and serve the autistic community.

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  31. Thank you for this wonderfully worded essay. As an autistic adult, I thank you for all you do and have done on my behalf.

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  32. I am so happy to see this! Thank you John. The message Autism Speaks continues to send is destructive to all of us.

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  33. I'm pleasantly surprised to learn of your resignation, John, and happy that you've realized the Wright's wrongheadedness at last. I never wrote or spoke anything against you, as I had hope that this day would finally come. Now you have my respect, sir!

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  35. John - beautifully said, and thoughtfully summarized. I'm deeply sad, as someone who chooses to believe real change can come from within when compassion and dedication collide. I have to hope that your actions will begin to bring about the very change you've been advocating for so long . . .

    Kammy Kramer

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  36. John, I admire your integrity and truly support you on your decision.

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  37. I could not agree more! I am a director of a local nonprofit that celebrates and appreciates kids with autism, while also helping them learn. It has been frustrating to see all the money raised go towards research, while families are struggling to afford the daily services their children need and love the most! Your books are great too by the way :)

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  38. I have been harping about this issue for over 5 years to Autism Speaks, thus the reason I ended my relationship with them after last year's walk in Dallas. We have to help the older ones now as well because they are the ones who missed out on the much needed therapy at the young age!

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  39. Big step, and I completely understand your feelings and decision.

    But it does leave us with a huge question: what do we do about Autism Speaks, which seems to have the lion's share of power and money relative to autism and public policy? It's a scary thing to read what Ms. Wright has to say and to realize that it will represent "autism" to Congress and anyone with money and power.

    Any thoughts about how to take up the banner of diversity within the spectrum? I'd be glad to be a part of a movement AWAY from AS and TOWARD something that supports and engages people on the spectrum!

    Lisa Jo Rudy

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  40. Thank you, John, for your voice and your public stance on this.

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  41. I'm very happy to see the Autism Community continue to take a firm stand against Autism Speaks and I can't say enough good things in support of your decision.

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  42. Thank you, John, for your voice and your public stance on this.

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  43. Thank you, John, for your voice and your public stance on this.

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  44. John, thank you for doing this. Your resignation sends a very loud message--to those at Autism Speaks, but also to those of us who consider AS destructive and harmful to the autism community. I hope people will take notice and start supporting other organizations that actually provide the services you speak of. Organizations that serve autistic people and actually LISTEN to them as well.

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  45. As a parent of three young children, two on the spectrum (ages 5 and 9), I can only thank you for that beautiful post. Some of us with young ones have "woken up" as some commenters have said. There just doesn't seem to be a place for us. Our kids rock and we're just trying to get them the help they need to enjoy life in a non-autistic world. I'm so sick of hearing about how horrible life must be for us, how AS thinks autistic children are some kind of broken toys to be mended. Our kids are amazing, fabulous human beings, and AS needs to know them as that. So, not only will our kids be taught regular school subjects, they'll get an added dose of a class called "Advocacy" because it sure as hell sounds like it will be the most useful of all the lessons they learn.

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  46. Thank you for your decision. Thank you.

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  47. Bravo! I need help for my 30 yr old son and have no where to turn to in the autism world. We need this all to be out in the news. Everyone counts, not just our young. Bravo John. Let me know if you go on your own and need help. I'm at your service.

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  48. I am very happy to hear that you are distancing yourself from this harmful organization. Autism Speaks has never spoken for me nor for my son. We are both autistic. We need more influential adults with autism (like you) to speak out again their offensive messaging.

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  49. Thank you for fighting the good fight from within as long as you did. I hope you will consider working with ASAN or a similar group - you're such an important leader in this community.

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  51. Well said, John, and well done! You've fought the good fight and will continue to do so in other venues. You're making a crucial statement here, and I wish you nothing but the best moving forward.

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  52. Well, John.... I did wonder why you got into bed with those pillocks. At least you tried. The fact that it didn't really make a difference is not your fault but theirs for not listening.

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  53. Thank you. Please join us in contacting your State Representative and Senator to urge them to listen to Autistics instead of Autism Speaks during this "summit."

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  54. It gives me hope to see people doing the right thing. Hopefully this will spark some change. Any Change is good.

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  55. Despite having hyperbolically criticised your work with Autism Speaks in the past, I must give you credit for a very brave and impressively delivered statement.

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  56. I am so happy you made this decision, John. You tried for so long to effect change from the inside, and it's become painfully obvious that they aren't interested in changing. I hope your high profile will help smart people understand just what is wrong with Autism Speaks, so that they will choose to support organizations that include autistic people in a meaningful way, and that actually help the people they claim to represent. Yay for you!

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  57. Thank you for being vocal about your decision-making process. Your efforts will be much better applied to other activities.

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  58. Thank you for standing up for yourself and for others who can not stand up for themselves.

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  59. Thank you for standing up for yourself and for others who can not stand up for themselves.

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  60. Thank you, John, for speaking on behalf of autistic individuals during your time with Autism Speaks. I truly wish the leadership of the organization would open their hearts and minds to what you (and autistic individuals like you) have to say, and then modify their messaging in a way that reflects it. Until then, they can count me out as a supporter of theirs.

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  61. John, Having read through her article, I can only assume that you have a long history of disagreement with Autism Speaks.

    Because the picture she paints after each "This is autism," are experiences that many parents have had to some degree. Not all, but many. And I can't fault her for bringing these realities to the forefront. If families can't talk about what really happens in the home, or their struggles, then the rest of the world will never understand.

    But I agree, she leaves out the flip side of "This is autism," and all the people who are innovators, creators, and problem solvers. If the world only hears about the problems, then they will forever see autism as a problem that has to be "dealt" with.

    In the big picture: your moving on is just that. You're going to fulfill some destiny that's you've been building the path toward since the book first came out. And that's okay. There has to be enough room on the world-wide table for all sorts of opinions. Keep going and doing good things.

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  62. I met you briefly shortly after you started working with Autism Speaks and you mentioned what you said here about working from within and trying to make a difference with AS because they were the biggest group around. I completely respect what you tried to do and respect how hard you must have worked. I similarly respect very, very much your decision to resign. I wish I could have respect for Autism Speaks as well.

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  63. Brilliant leaders understand the sharp points of change. You will continue to inspire and teach.

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  64. One last word: "Results are obtained by exploiting opportunities, not by solving problems. ”
    ― Peter F. Drucker

    Here's your chance!

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  65. It takes guts to do what you did. And I know only an autistic will choose doing the right thing over any other personal benefit. It takes guts being an autistic in the public eye. You have managed both with great eloquence. Thank you. Truly thank you for not being part of this awful organization any more!
    Perla Messina
    Chairperson
    Greek Association of Autistic Asperger and HFA Adults
    Athens, Greece
    www.aspergerhellas.org

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  66. Thank you for your efforts to change the group's focus and perspective. It's a shame they will not listen to those they purport to advocate for. All Autustics deserve a voice. Autism Speaks is NOT that voice.

    Thank you for moving forward without them.

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  67. John,

    A courageous act does not go unnoticed. Thank you for speaking your heart.

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  68. As another autistic person -- and the parent of a child who is *just like me* -- I have been very uncomfortable with Autism Speaks for a long time. Thank you for calling them out and removing yourself from them. It was giving them a legitimacy they should not have.

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  69. Good for you, John! There needs to be more organizations that actually do research to provide better resources for people with autism.

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  70. Good for you! Thanks for taking this step--I hope it has the impact it deserves.

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  72. Thank you for the time you spent valiantly trying to make changes from the inside of Autism Speaks, John. I always knew that if these efforts were ignored you would one day step away and refuse to lend your support to this organization.

    I am always thrilled to hear of the many new and emerging ways you are connected to the Autism movement, in addition to the powerful work you have already done through writing, speaking and innovating programs. Great that you are involved in government committees and groups to broaden and deepen understanding of Autism and advocate for innovative health policy changes.

    Best regards!
    Bev Leroux

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  73. Wow, powerful and objective. You inspire insight into the core of a very faulty organization...more need to sit up and take notice. Continue your journey as the ambassador for the families and individuals who are living under the 'disabled microscope' professionals and general populace mistakenly categorize us in. Kudos to a man who repeatedly asks for accountability and willingness to provide personal knowledge and assistance to this organization, who has CLEARLY lost focus as to whom they serve! Be proud my good man...be VERY, VERY proud.

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  74. Thank you for all you do! My husband has asperger's syndrome, and I only hope that I will be able to emulate his many beautiful qualities that I, and many others, were not born with. Honesty, genuine, non-manipulative, etc. etc. etc.
    I really appreciate your approach; Autism Speaks does not deserve to have your support.
    You are the BEST!!!!
    Julia Peterson

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  75. Thank you! I understand it was a difficult choice that you've made. I had a misguided notion that Autism Speaks would change. How mistaken I am.

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  76. John, very true words. Although not directly connected through family with a person on the spectrum, I coach Special Olympics, where a number of athletes in the programs I volunteer with, have varying degrees of autism, so I constantly work to educate myself about factors that affect their lives. I am familiar with you through your blog and books, and I identify with and highly respect your words and perspective. I have a son with Down syndrome and have at times been active in organizations that advocate for and provide services to individuals with intellectual challenges - and apart from Special Olympics - have found many such groups become more focused on their existence at the expense of the clients they serve. It's sad that such groups lose their way - off the path of their original mandate - and along the way many valuable voices such as yourself. Speaking personally, I believe being an outside independent force, using both social and conventional media, crowd funding and crowd sourcing has a much brighter outlook for accomplishing goals and maintaining an existence than the bureaucratic mire that many advocacy organizations have become. My path follows the words of Grouch Marx - "I wouldn't want to be a member of a club that would have me as a member" - or something to that effect. Social activism works - especially when one is guided by an unwavering commitment to the message - such as yourself. Count me in as a fan and a follower.

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  77. well said. thank you for having the courage to be yourself.

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  78. this thrills me, this is how people take notice. thank you for your work, im glad you're on our side

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  79. My daughter is 13 and autistic, I fight every day to make sure she has the same opportunities as everyone else. She has changed my life so much that at 4o-ish, I want to go back to school and become an autistic teacher. I want to thank you so much for Speaking out! We will find another Autism organization to walk for. Thank You!!

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  80. John, I respect you and your viewpoint--and I agree with it as well. I've never been a fan of Autism Speaks--they don't speak for me or my children. My children are not diseased. They are not a problem. They don't need to be Cured. I love them exactly as they are, with all their quirks and tics. Yes, I wish at times they had fewer challenges -- but I also can't imagine them any different from the lovable, funny, giving, sweet, quirky kids they are.

    Autism Speaks irritates me, as do the "it must be vaccines" people. I am sick of everyone looking for something to blame. Work with your children and what you have -- you cannot change the past. Change their futures. Work toward making more therapies and support services affordable. THAT is what is needed.

    I look forward to your next book. You are a role model for my children and myself. Thank you for all you do.

    Marilyn, mom to Aspie Twins
    (Yeah, not a fan of DSM 5 either).

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  81. John, I respect you and your viewpoint--and I agree with it as well. I've never been a fan of Autism Speaks--they don't speak for me or my children. My children are not diseased. They are not a problem. They don't need to be Cured. I love them exactly as they are, with all their quirks and tics. Yes, I wish at times they had fewer challenges -- but I also can't imagine them any different from the lovable, funny, giving, sweet, quirky kids they are.

    Autism Speaks irritates me, as do the "it must be vaccines" people. I am sick of everyone looking for something to blame. Work with your children and what you have -- you cannot change the past. Change their futures. Work toward making more therapies and support services affordable. THAT is what is needed.

    I look forward to your next book. You are a role model for my children and myself. Thank you for all you do.

    Marilyn, mom to Aspie Twins
    (Yeah, not a fan of DSM 5 either).

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  82. Thank you John. This is, I believe, the beginning of a new and excellent chapter in the development and understanding of autism as it really is. I hope every autistic reaches out to greet you with the deep appreciation you deserve.

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  83. Wow, I'm so sorry. As an autistic adult (Asperger's), and a long time fan of your writing, I was appalled when you started working with Autism Speaks. I don't know anyone in the adult autism community who likes them. I thought you had sold out. But when you explained to me that you were hoping to bring about change from within, I started hoping, too. I'm not sorry you left them, because they suck, but I'm sorry it didn't work out. It's possible that your leaving will speak louder, and be heard farther, than your voice from within. We can only hope. Keep up the good fight, John Elder. You're a shining light in the dark.

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  84. Thank you for your courageous stand. I am a writer on the spectrum, and Autism Speaks does not speak for me because it doesn't provide opportunities for persons on the spectrum to attain their potential and contribute to their communities. Excluding persons with autism from the organization's governance is a symptom of this larger problem.

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  85. When it comes to the question of: how do autistics create change and participate in groups that are shaping policy, I think the answer is that we need new groups. The big problem I see is that the most powerful groups, (both in government and run by charitable organizations) are ones run by NTs that then invite autistics to join. Which is fine. But I think it's very hard for pre-existing groups to truly understand the needs of the autism community. What we need are new groups...groups started by autistics, run by autistics; groups devoted to policy change, with an understanding of how to specifically implement a plan that would create positive results. A new group would have very little power, sway...but that's just an obstacle to be overcome. The alternative...of repeatedly relying on NT organizations that are disconnected from the issues (like Autism Speaks) simply doesn't work. It will continue to not work. We need new groups with new voices. Groups initiated and run by autistics. Until then, we'll just see the same pattern of autistics being shut out of the discussion, reduced to the role of passive observers.

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    1. My son has aspergers and has started a Facebook and a radio show called Understanding Autism. He has started speaking at conferences also. He was tired of being talked about. He also felt people are aware of autism but not really able to understand it and how it effected his life. Please feel free to add anything to his page as he wants more support from others.

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  86. Having myself served on Nonprofit Boards the movement is often slow but one must continue to speak up. I would encourage you to continue your involvement with Autism Speaks because they need YOU to evolve their views. The theme of painting with a broad brush is interesting. Mentally ill people, poor people, minorities, women, -- all have complained of the same thing. As groups have progressed, the recognition and even the celebration of the diversity within the group becomes more the norm. The process does require patience and it is important for all individual experiences to be aired along the way. You must stay involved!

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  87. Thank you John. Your statement expresses my opinions exactly. The statement you made in resigning cannot be dismissed as all the communications that other autistic people have. This is one of the most powerful acts of advocacy I have seen in the Autism world. It also shows your integrity as a person and for this, I salute you.

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  88. Thank you John. Your resignation is one of the most powerful acts of advocacy that I have seen in the Autism world. Without your membership on the Board of Autism Speaks, they would never have been obliged as a group to listen to opinions which represent those of many Autistics. I congratulate you on your courage and your strong ethical stance. Thank you, again.

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  90. John, thank you...truly, thank you for this. I serve on the Communications Committee of AS and have been struggling with my own issues related to the organization. I've met so many people since associating with AS who do not subscribe to the mindsets of those in the top tier--people who are open to listening to the voices of individuals on the spectrum and who are trying to change how Autism Speaks operates.

    Like you, I also believe that working from within is one of the most effective ways to cause change, which is what I have been trying to do. I believe that, for the time being at least, I am going to continue to do just that, because I don't want to give up hope yet. It's a long and difficult process, but one that I feel is necessary for this organization to make any sort of real progress, which I believe it has made already just in the past few years. But still, there is a way to go.

    Thank you for your candor and for writing this. I know we don't get to speak often, but I hope we might be able to start corresponding again one of these days. Hope you are doing well, sir.

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  91. John:

    I am glad that you resigned from Autism Speaks. Now I understand why you were with that organization. Autism Speaks will never listen to us. They are like the Europeans who carved up Africa in Berlin in the 1880s without a single African present. Bravo for quitting! Meow.

    Xenia Grant

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  92. John:

    I am glad that you resigned from Autism Speaks. Now I understand why you were with that organization. Autism Speaks will never listen to us. They are like the Europeans who carved up Africa in Berlin in the 1880s without a single African present. Bravo for quitting! Meow.

    Xenia Grant

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  93. Thank you so much for this! This decision was crucial. And your letter is perfect. You tried hard to be moderate and play a useful role and it IS appreciated by many of us. And now a new chapter begins. Onward!

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  94. Hi John, I was very troubled when you decided to join those committees on AS, but I understood your intentions. I am so disappointed that your efforts at educating them fell on dead ears, but you tried.

    I really hope your remarks will find their way to and be heard by so many of the celebrities who blindly jump on the AS bandwagon. Maybe they'll finally wake upto the fact that what AS stands for in no way stands for the Autism Community.

    Thank you Mr.Robison. I appreciate what you tried to do. I will be sharing your blog post far and wide.

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  95. John, my fifteen year old son looks to you as one of his role models. He calls being Aspie as "a different kind of normal" and embraces who he is. Thank you for once more re-inforcing what he too believes.

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  96. I read Suzanne Wright's op-ed and thought, "That is *nothing* like my daughter." I also thought,"That is *exactly* like my son." That sort of autism does exist and creates daily emergencies for the sufferers and their family. I say "sufferers," because I think that is the important criteria for distinguishing between individuals with severe, disabling autism and individuals with autism who are not overwhelmed by their sensitivities and who are attuned towards an inner balance of gift versus disability. I simply do not understand why Suzanne Wright did not specify which individuals with autism she was writing about. Otherwise, how can people learn about the needs of people with autism and the needs of their families when they do not also learn that there is no single "autistic experience"?

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  97. I sincerely believe your decision to resign makes sense, and I hope you'll know that our children, and you, are not LOST at all. Please continue your work with another organization. PLEASE. We need your contribution to continue, for the sake of my son and for the sake of those whose hearts go out to autistics and their parents, who have been fed hysterical lies and mischaracterizations about autism for years.

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  98. As I read this post, I was unfamiliar with the Op Ed by Autism Speaks, so I clicked over to read it before finishing this piece. I am the parent of a special needs child with epilepsy, and both my children are on the autism spectrum.

    As I read the Op Ed, I did not immediately understand why you were so upset - because as a parent/care giver, I could relate to much of what she was saying. But then seeing your view on this made me realize that you are absolutely right! Advocacy is so much more than helping parents, grandparents and caregivers... it is also about helping those affected by the condition. My daughter is non-verbal, but if she could speak, I'm sure she would agree with you... there is more that can and should be done for the individuals with autism.

    Thank you for this realization and for your past work with the organization. I hope some changes can be made and that they can work to advocate for everyone, and not just caregivers.

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  99. Thank you for having the courage to speak out, John. Autistic people, like my son, will live in a better world for it.

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  100. I love your post and have huge admiration for you and am very grateful for all your posts and the guidance and wisdom you share to us all

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  101. You said important things here. I admit to not being a fan (... yeah you probably saw my response the one time you commented on my blog) but I can respect an important thing when I see one. Thank you for this.

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  102. Hi John,

    Thank you for doing your best to educate and drive change.

    It is important to know autism is different. No one person with autism looks like another.

    We need to help the ones with autism that need help, treatment and services - especially to keep them safe. And on the other end of the spectrum we need to enjoy the ones that need no help.

    It is important to share perspectives. They are different.

    Sincerely,
    Lisa Ackerman @ TACA

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  103. Thank you John for your strength. Many of us on the spectrum who are new to the spectrum (in terms of diagnosis) have just started to find out the "issues" that Autism Speaks has caused/is causing and it troubles me... I have lived with Autism all my life and was finally tested at 38... and everyone acts like it "goes away" at 18...

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  104. John. today you are my hero. Thank you for this responsible use of your platform.

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  105. he dont sound too autistic to mua

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  106. Bravo, John, for standing up for what you believe. I stand with you.

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  107. I applaud your decision to resign from Autism Speaks. I hope that, perhaps, it will give the Autism Speaks organization pause to think about the harm they have done to the people they claim to be trying to help.
    Thank you for standing up for us!

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  108. Thank you for your words. I do not have autism but I work with young adults who have this diagnosis. I have never felt comfortable with the language that Autism Speaks uses - I alway felt it always treated persons with autism as something other, something less. Continue your work, some of us are listening.

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  109. YAY John Elder Robison, well-written piece. Thanks for taking a stand. You're right when you say that Autism Speaks doesn't represent autistic people or families with older children. I made your resignation the main blog at The Art of Autism newspaper. http://paper.li/artautism/1378649085

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  110. Thank you so very much John! Well said and well done, sir!

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  111. RIght on, John! My son, exceptionally bright,funny and musically gifted, have read your writing and love it! When he was diagnosed at age 6, I explained to him what Asperger's entailed. I said that with it he would have some challenges, but far more gifts. What we were going to do was focus on the gifts and work on the challenges one at a time. I also explained that everyone in life has challenges, but don't necessarily get the gifts he would. At age 12, he has become a most interesting person, funny, musical,logical and my favorite person on this earth. Thanks for standing up for your beliefs!

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  112. RIght on, John! My son, exceptionally bright,funny and musically gifted, have read your writing and love it! When he was diagnosed at age 6, I explained to him what Asperger's entailed. I said that with it he would have some challenges, but far more gifts. What we were going to do was focus on the gifts and work on the challenges one at a time. I also explained that everyone in life has challenges, but don't necessarily get the gifts he would. At age 12, he has become a most interesting person, funny, musical,logical and my favorite person on this earth. Thanks for standing up for your beliefs!

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  113. John, I agree wholeheartedly. I am a single mom with Aspergers. My 17 year old has Aspergers and I just received the go ahead to have my 7 year old evaluated. I am appalled every time I read something written by a so-called professional that is so off the mark. Here is my proposition, and I don't know how much of this you get time to read, but here goes. There needs to be an organization, board, group, what have you, something completely made up of people with autism. You, Carly Fleischman, and so many other fantastic voices who have already stood up for the silent voices of the autism community. And, something else, my son and I refer to our "disability" as DOS. Different Operating System. That is really all it is anyway. I truly have so much to say. I just cant seem to get my voice out there. We are SO MUCH MORE than autism, selfism. How many brilliant minds have changed the world for everyone, autistics and neurotypicals alike, who have had autism. It is a misnomer. Please, Mr. Robison, don't give up. Your have more sway than you could ever possibly know. I am getting choked up as I write this.

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  114. Right on, John. Very well expressed. Start your own organization! The majority will follow...

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  115. Ok, I'm in. Not sure where I have Autism Speaks in my various stuff online but I'm with you, I'll also disassociate myself from them. PLEASE NOTE lol I do NOT generally base my decisions on the opinions of others, unless I trust them implicitly in the given area... So...you get it. Ty John for keeping it real. Like ya lots. -Lorin Neikirk

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  116. Brilliant. I can be nervous about pushing the "gift" aspect of autism/AS, as I recognise that I am pretty much at the high-functioning end of the spectrum, so I really don't want to minimise the negative impact it can have on those with greater difficulties than mine (or indeed their families). But we are not "broken" things to be "fixed"; we are people, who differ from "normal" only in that our strengths and weaknesses aren't the same as everyone else.

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  117. Thank you for the power of your words and the conviction in your voice. It is appreciated and powerful. Those with autism must be able to lend their voice and be heard, and not fear being patronized or dismissed. So long as those in leadership continue to view autism as an illness, rather than a legitimate part of his/her identity, organizations such as Autism Speaks will begin fade into obscurity. My family appreciates all that you have done. Your words and advocacy have touched countless lives--and helped us along our journey. Keep it up, John! We hope this leads to a new fork in the road.

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  118. John, your voice is a gift to the autism community and the community at large. Thank you for taking a stand against a very large organization in a decision that may have been very difficult for you. Please continue to be a voice for people with autism all over the globe. You are an inspiration and are impacting people more than you realize.

    Emily Boshkoff-Johnson
    Research and Training Coordinator, Global Autism Project

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  119. thank you!! as an autistic 30 year old woman (just diagnosed june 2012!) im so proud that you are standing where i would be: in a place that says we are this way for a reason, not because we are diseased or disabled! its a reorder not a disorder! its a different-ability, not a disability! :) thank you!

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  120. Autism speaks represent a skewed and narrow view- closer to eugenics than real science. In my experience, as an autistic person, there is no point in dealing with them. They are implacable. They are banned from raising funds in some countries including my own ( Australia ) and with good reason. A fraud is a fraud. It's time autistic people were allowed to live without shame and without the threat of intervention in our lives for purpose of "cure".
    Good on you John. You've made the right move. Now use the experience you've gained to build a better model.

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  121. John, I have read your book Look Me In the Eye..our son was missed diagnosed until he was 14, so our struggle has been long. He is now 18 and graduated high school on his own, your book helped with how we handle things with him..I am happy that there is a voice for Autism and can't wait to see what is next for you .. good luck !!!Karen

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  122. John, thanks for your efforts in trying to change Autism Speaks. Unfortunately, they are unable to change their abusive view towards people and children who have autism.

    Good luck, John, with your future! Look forward to seeing you again at another event in the Boston area

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  123. Snapdragon, you said:
    "I think that is the important criteria for distinguishing between individuals with severe, disabling autism and individuals with autism who are not overwhelmed by their sensitivities and who are attuned towards an inner balance of gift versus disability. I simply do not understand why Suzanne Wright did not specify which individuals with autism she was writing about."

    Actually, I think the worst part of her message is how she talks about those who are the most challenged, like your son. I'd never minimize the disabilities he has or the time, energy, and money it takes to care for him. But surely you wouldn't say that he's "missing" or that his life isn't worth living. Surely you wouldn't say that his very existence is a burden and tore your family apart, or that all you do to support him isn't worth it. Autism Speaks is saying all of that in the letter. They claim that the existence of people like him is a crisis. They're denigrating the less disabled people on the spectrum by comparing them to people like him. I think when John criticizes Autism Speaks, he's defending the most severely disabled people on the spectrum, too.

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  124. I would not be the person I am today without my Asperger's. My love of music, both making and enjoying it... My talent for computer repair... My bottomless pit of trivia... The challenges that come with it... I wouldn't change a thing about me. All I ask for are the tools, resources, and understanding to make my way in the world. I don't want or need a cure. Autism Speaks doesn't get that. They talk about fixing little kids that don't need fixing, just ways to turn autism to their advantage. They ignore all of the adults out there who have aged out of support services, what little there is. They are out of touch with the very people they claim to help. John, you are right to leave that behind and find new ways to speak out for all of us, autistic and neurotypical alike. When anyone or any entity, governmental or private, fails to honor the basic humanity of those they claim to help, they become part of the problem, and not part of the solution. I hope that Autism Speaks will listen to John, and to those of us who also speak out, so they can once again become part of the solution. Godspeed and all the best.

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  125. Well said! You're also a rolemodel for others of our neurological diverse and or disabled collegues that have been exploited by those claiming to help us who are wired different. I have brain injuries not autism, and I see how this in some ways relates to my life as someone who as a kid exploited by Shiners Hospital. One small comment in hopes of build bridges not trying to nitpick or draw direct comparisions... when I read l: "Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target." I thought oh I wonder if this writer knows about Jerry's Kids or all of us former Shiner's patients that fill were abused and misrepresented by these huge "nonprofits" claiming to represent us!!!! Maybe we should all work together while respecting some differences in what happened/is happening to us! Just food for thought. I deeply respect your standing for yourself and so many others! With respect and solidarity -Curtis Walker

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  126. John, bravo for making this decision and speaking out about it. I'm 100% with what our mutual friend Michael Wilcox said, above.

    I have a sneaking suspicion, though, that our mutual friend Dena Gassner is wrong, also above, about your voice becoming silent as a result of leaving Autism Speaks ;-).

    In fact (and in response to Lisa Jo Rudy's question, also above), there is much work to be done, having seized the day: it is time for us all to reach out to the politicians and the advertisers who support Autism Speaks to persuade them to invest in other autism organizations that include autistic people in their governance and have fundraising and spending priorities that respect and better serve the actual needs of autistic people and of the local communities from which they raise funds -- and to serve notice that if they do not, we will cease to support them and urge others to join us in doing so. All the more so for those of us, like you, John, who have high public visibility and wide readership, in print and on the Internet.

    Welcome back to the movement.

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  127. Six years ago we supported autism speaks - until they still refused to acknowledge that there was no scientific proof linking vaccinations to autism. I am saddened that there is no room for autistic people at autism speaks beyond the limited role of victim. Autism, like neuro-typicality, is multi-faceted. Wright's letter merely reassured my husband and me that there is no room at AS for my child. They do not represent him and what they can offer is not the help he needs or wants. He's still a little boy and perhaps when he is older he will advocate differently for himself but for now, we are his advocates and we choose to not affiliate our family with AS. Please let us know your next adventure because we are behind you all the way.

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  129. A man of intergrity - time to write another book...yes, I'll buy it!

    Tracey in Seoul, South Korea

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  130. John,
    I support you 100%. I have never supported Autism Speaks, because I have never seen its affect, reach, money or supposed power in any Autism Community I have been a part of. Nothing they have done with their millions have impacted my children, nieces or nephews with Autism. It has in fact hurt them. When Autism Speaks come to town with a fundraiser, it takes local money from local fundraisers. I have never supported an Autism Speaks walk, because they end up replacing our local Autism walks, and money spent in our community.
    I honor your decision and am happy to see you take this stance.

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  131. John,
    I support you 100%. I have never supported Autism Speaks, because I have never seen its affect, reach, money or supposed power in any Autism Community I have been a part of. Nothing they have done with their millions have impacted my children, nieces or nephews with Autism. It has in fact hurt them. When Autism Speaks come to town with a fundraiser, it takes local money from local fundraisers. I have never supported an Autism Speaks walk, because they end up replacing our local Autism walks, and money spent in our community.
    I honor your decision and am happy to see you take this stance.

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  134. Hyperbaric oxygen is one of the modalities that we use, and without the "listening" part, many parents miss out. Please start AUTISM LISTENS, John...as that is the right tact to take for the community to make our voices heard. The message needs changing, and leadership.

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  135. John Elder, thank you very much. I applaud your decision to leave the very organization that vilifies people like us.

    And sorry if I called you a traitor in one of my blog posts for having joined Autism Speaks, but it is good to know that you have seen the innate evil in that bigoted organization.

    We hope to hear from you more soon.

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  136. You have my respect for your courage and integrity, John. It is never easy for anyone to make a change of direction when it becomes clear something hasn't worked, especially after putting in so much effort. Best wishes in all your future endeavors.

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  138. Good for you! Well written & totally accurate. Hoping more people stop funding & supporting them when I don't see them doing anything for people with autism with all that money they receive. I hate that so many well-meaning, generous, giving people donate to AS thinking they are helping, not realizing...

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  139. Good for you!! Well-written & totally accurate

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  140. Good to see more positive responses. Our latest blog is about this. Autism Speaks Aut to Listen to John Elder Robison bit.ly/1aqYuMj

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  142. For as much money as Autism Speaks takes in, a very small percentage goes to research and a much larger portion to overhead. The NIH is still the primary means for autism research. As far as the organization itself, it's just such a shame that Autism Speaks must paint the situation with such a broad brush. On some level, Suzanne Wright's message for a national plan is reasonable and needed. Autistics of all ages could certainly use more available support. On the other hand, her approach is still one of fear-mongering and doesn't acknowledge the full range of the condition. I would imagine that stems, ultimately, from their drive to find a cure. Which is obviously a topic of much debate. In short, John, your goals would have always been at odds with theirs. The Wrights want a cure for their grandson. Any rationalism won't budge them from that very emotional standpoint. To them, autism is a disease and its eradication would equate, at least metaphorically, to their grandson's salvation. There's no middle ground with people who have these views. In their minds, it would be like trying to find the "positives" of cancer. What can you do?

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  143. I am the mother of an 8 year old boy with autism. I really appreciate your honesty in sharing your life journey with complete strangers like me. Reading about your experiences gives me insight in further understanding my own son's daily life. I feel I am a better parent armed with the knowledge of first-hand experiences. Thanks for helping my son in a very immediate and real way.

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  144. John, I applaud your principled decision, and the clarity of your statement of resignation. Thank you for your work!

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  145. I run a non-profit business for those on the spectrum. I have raised a 17-yr old daughter with Aspergers, and I have two grandchildren with Autism. I would LOVE to have you register with my non-profit & advise me of what our Autism Community needs. We are 501C-Pending, and I hope to one day contribute in a BIG way! Currently, we meet for events, and we provide a forum for those on the spectrum and our Service Providers. My website: http://asdhouston.com/

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  147. Thank you so much for your courage and your clearly-presented perspective. I appreciate it so much, and wish you joy and success going forward.

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  148. Hi, John!

    I respected your attempt to change Autism Speaks from within, and now I respect your willingness to walk away now when it became clear that you weren't succeeding. Above all, I respect your writing publicly about your disagreement with them.

    In short, I respect you.

    Thank you for all that you've done.

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  150. I have always felt that you spoke the truth, and that you are a person of integrity. Right now, due to eye surgery, I can't read as much as I'd like to, but I just wanted you to know that I enjoy your writing and that you have helped me understand someone very near and dear to me and to let him be the wonderful, if quirky, person he is.

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  151. You have shown amazing tolerance and now you are showing amazing courage. I'm really looking forward to whatever it is you are going to do next!

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  153. As an autistic adult, with a special needs child... Thank you. I 100% agree with everything and I wish autism speaks could listen to those of us who actually ARE autistic and take it into consideration. We are the people they are trying to "fix" - you'd think our opinions and feelings would have some value.

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  154. Great commentary. There should be an organization called Autistics Speak. Being on the spectrum myself along with 3 of my children I know firsthand the battles. Just today one of my friends with a son on the spectrum was telling me about how he was trying to find a doctor who would undiagnose him. As if you could change a Honda to a Toyota just by changing the decal on the bumper. I beg her to get him to read your books as I have. So that he can see this as a difference, not a disease. Hopefully as he matures (he's 17) he will learn to accept what he cannot change and embrace his different abilities.

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  155. " We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.'

    "We" are the high functioning that can understand words and emotions,"We" are not the ones that rely upon the state and the good intentions of others,"We" are not the ones with little language and no bodily function control, "We" are not problems for our parents or society because "We" aren't autistic.

    As someone that led this ND movement before anyone commenting here or writing on this blog had ever heard of it and has since renounced it, Mr. Robinson does not speak for me nor the millions of others. There is no WE in autism. There is only I.

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  156. John,would you be able to tell me why you were willing to join up with Autism Speaks in the first place,and especially to be on the Scientific Advisory Committee,which is entirely devoted to finding treatments for autism?Did you know that was what they did when you joined up?

    You are also a part of IACC,which has the same goal.Did you know that was what IACC does,and do you plan to resign from them as well?

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  157. Roger, I have no issue with finding ways to treat and remediate autistic disability. I am a strong supporter of a broad range of research, at AS and through the Federal Government.

    That work has covered GI issues, genetic problems leading to intellectual disability, sleep problems, panic, executive function, language . . . the list goes on.

    I have talked a lot about our responsibility as a society to find ways to relieve the many ways autism can disable a person. We have a duty to develop and make available a range of therapies that's broad enough that autistic people with very different needs can have those needs met.

    My issue is one of respect. I believe autistic people - however we feel about being autistic - deserve to be treated with respect and we deserve freedom to live our lives as we choose with best potential for success.

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  158. Thank you. Thanks for making the effort to salvage them, and redeem them, and thank you for openly and clearly admitting that the effort was not succeeding. It was worth trying, I think.

    It still bugs me more that they are misleading about what they do than that what they do is try to eliminate me and people like me from humanity's future. I can deal with people hating me and wanting me never to have existed, but it really bugs me when they say things which are incorrect.

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  159. I can imagine how hard it must be to hear that as an Autistic person, you have an illness and that you are part of an epidemic. But just like those with other illnesses like cancer, you do indeed have an illness and you are an epidemic. Like cancer, autism is not not natural, and it's not something to be celebrated. Sure the wonderful person behind the illness is to be loved and celebrated, but the illness itself it not a cause for celebration. I'm glad that Autism Speaks recognizes this and is the voice of reason in this situation. Because of your conflicting beliefs about Autism it's probably best you are not associated with Autism Speaks, I would not want your attitude to spread to others.

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  160. Cherie, with all due respect, your ideas fly in the face of current medical knowledge. As a person with good grounding in autism science I can concede that some people with autistic behaviors are that way as a result of chemical poisoning. However, the numerical majority of autistic people appear to be naturally occurring through various means. Some of those people are very disabled, to be sure, but they are not diseased. Nor are they part of an epidemic which implies disease.

    In this case, with respect to word choices, it is you who are misinformed or incorrect

    If you would like to learn more I refer you to the IACC reports on autism. They summarize current knowledge as updated annually by our Federal committee.

    Thanks for your thoughts and best wishes.

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  161. John I do not recognize your autism science expertise nor any personal experience to justify your role in speaking on behalf of persons with severe autism disorders including my son. I am happy you resigned from Autism Speaks. Hopefully AS can now more readily pursue its treatment and cure mandate and goals. I am also very happy to read Suzanne Wright's very honest and courageous comments about the real challenges facing many with autism disorders and their families, challenges with which you have not indicated you have any personal experience. I wish you and your family well.

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  162. I have Aspergers, and I have a child on the severe end of the autism spectrum. While I respect H L Doherty's opinion I wholeheartedly disagree with it. As someone on the extremely mild side of the condition, I do have some insight as to why my son is the way he is. And because he has no voice, I am his voice. There are days like what Suzanne Wright spoke about in her diatribe. There are hard days, there are exhausting days, and there are days where I feel like I am on the verge of breaking, BUT the days when I see his potential, the joy, and the happiness far outweigh the bad days. Parts of autism do suck, I know, I have it. There are days that I'm so down about my inability to relate to people, and there are days where I feel miserable that I want to be like others, and just can't. I know my son feels this way too. Autism Speaks doesn't speak about any of the positives regarding autism. And they have not done anything to further the needs of children with autism. Just look at what they did to "help" the disability access cards at Disney Parks?! And further, look at the financials! The Suzanne Wright, who is a billionaire takes in a salary of $600K a year from Autism Speaks. There is more spent on advertising and salaries than there is spent on any kind of research or grants. Only 9% of the research money (which is about 5% of the income they take in) is spent on educational and adult services. The vast majority of research dollars is spent on Eugenic research, and discovering a "pre-natal" test for autism. What do you think that's going to do to parents who have a positive autism test on a pre-natal exam? Is the world truly that bad with our children to justify some of the statements Suzanne Wright made?

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  163. Perhaps a better name for the organization you resigned your role from would be "Parents of Autism Speak". I am the parent of a 23 year old wonderful and beautiful young man with autism and because he is completely dependent upon me for almost everything in his life… I am held hostage by it. There is no one on this earth that loves him more than I do and because I understand and value him so much, the sacrifices I have had to make are OVERWHELMING. Autism brings challenges and "problems" and chaos and clarification and gifts to families who live with it. If you are lucky enough to be able to function as an adult and comment on this and write a book and start a company and live by yourself or hold steady employment - then you may not want to see autism as a 'problem'… but for families who have children with drastic behaviors and issues that take over every single aspect of how they are able to function…. the word problem is way too benign and does no even begin to describe what it does to the individuals themselves and their family members, educators and caregivers. We do not think of our children as "problems"… but because their autism changes the way the are able to communicate, socialize, think and act…. the impairment they experience IS a problem-- for them, for their families, for the archaic education system, for the community that does not understand autism and makes incorrect judgements. I have worked for a decade supporting families living with autism, and 99.5% of the time it was not the ASD individual that was calling me for help and support… it was the mother of a person with ASD. (and some great dads) but you MUST look at what we go through as parents to validate your comments and perspective as an autistic person. Not all of you speak for all of you. Include in your judgement all of you who can not speak, can not toilet, can not have a conversation, can not go to a restaurant, can not go to public school, can not stay alone at age 23, can not express gratitude for what others do in the same way a neurotypical person does, etc….
    We caretakers are exhausted and tired, and the systems of care do not adequately alleviate what we have to deal with every day every week every month every year every decade. I agree with many of the criticisms about Autism Speaks regarding the $$$- but anyone that understands autism completely has to acknowledge that it is NOT an EASY or wonderful gift for everyone dealing with it.

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  165. Elizabeth, I think you for your comments and I agree, parents feel much stress, strain, and hardship for things that we as autistic people may see as simply "living our lives"

    Your thoughtful answer makes clear that this is a community where the affected individuals and parents often have very different support needs and should probably be represented by different groups, or different divisions within a arguer group.

    Something like the relationship between AA and ALANON I suppose.

    I often see people with autism as having views that are sharply opposed to the views of their parents, and in some cases parents have been very offended when that is pointed out. Yet it's not an attack on parents; simply an observation that kids (autistic or not) cannot be excepted to agree with all parental choices regarding their care

    Perhaps Autism Speaks should really be Autism Parents Speak. Certainly, if they made that choice, it would make their role clearer but who am I to say?

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  166. John, I completely agree with your assertion that perhaps Autism Speaks should become an entity for parents of children with autism. I wear two hats in this area-- Aspie and parent to a child with severe autism. My son and I are more alike then we are different. And I can totally agree with your statement that often times children and parents disagree with the way treatment is handled (I recall as a teen being so frustrated when my parents would ask me, "why can't you ?" Now, when they say that, I respond, "why should I?" I still stand by the assertion that AS is coming at this from the wrong angle. No one will disagree that raising a child with severe autism has its challenges. My son is 9, the chances are low that he will move out and be independent and I will probably be his caregiver for the rest of my life. If I look at it from the perspective that AS advertises-- he will be a burden, I will be broken, and my marriage and relationships will be damaged. It's a self-fulfilling prophesy. I think all people with autism are saying is let's approach this from a positive angle. Let's look at the strengths, the hope, and the positives and see if we can find a solution that will be mutually beneficial to everyone, and where everyone can come to the table and talk. My brother is a cancer survivor and I have never met a group of people so set against each other as parents of children with autism. I never recall my mom at cancer support meetings lamenting about how her son's cancer is worse than someone else's cancer. Or how so and so isn't doing enough to treat their child's cancer, because they aren't trying x, y, or z treatment. Or how unless you have cancer of a vital organ it's not really cancer. Maybe I'm rambling, but does anyone realize how petty everyone sounds e sounds?!

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  167. I commend you for your clear thoughts& well phrased words. John, you said what so many of us think, but put it positively and eloquently. I deeply admire your advocacy on behalf of all on the autism spectrum. There are some in the autism community who may never communicate in ways that others can understand. I'm so thankful that they have you to help make the point that they, too, are not a problem or a disease... just people who want a better life with less challenges in daily living.

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  168. I think I may have been wrong in my previous comments. After reading replies from both sides, there appears to be a GAP between the needs of caregivers of children with severe autism symptoms, and the needs of those who have manageable children, or who are themselves autistic and functional.

    What we need is a description of various organizations who are focused on support, research, and whatnot across the spectrum.

    Maybe trying to change AS is not the right goal.

    If they mismanage $$$ that seems to be a big issue. If they say they represent the entire spectrum, but they do not, that is an issue.

    But if they are focused on one segment of Autism, then they should be free to focus on that and allow other organizations to help the other parts of the spectrum that need their help.

    It sounds like they may not be trying to speak for those with Asperger's Syndrome or other less severe manifestations of Autism.

    I am still new to this, and see this as an opportunity for clarity and providing direction.

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  169. The tone of this article really horrified me. It is clear that Autism Speaks is not listening. I can't believe that people pretending to be leaders in the "autism community" could even write some of the words I read--I realize that there is a broad spectrum of behaviors, but how dehumanizing to imply that all autistic people run around tearing their clothes off or can't be toilet trained. Horrible. Degrading. Awful. As much as I wish you'd stay and continue to speak up, I completely understand your desire to withdraw from an organization that has clearly lost it's way.

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  170. Right now, I'm sure "Autism Speaks" is feeling "Autism-Spooked" ... which would always have been a better name for them, anyway..

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  171. We are all doing the same thing here:
    http://reversethestigma.blogspot.com/

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  172. John, the difference between autism community leaders of organizations and many of us is that of being the one who studies vs. the those who are studied. To them, autism is a business and the rest of us have to live our lives the best we can regardless of how much money is raised. There are many dedicated and enlightened professionals at many levels. Please don't throw out the babies with the bath water. But at the same time I believe that being ignored is the worst form of discrimination and lack of respect. You did what you had to do and my prayers are with you.

    Bob Titus
    Former Director of Public Policy
    for Autism NJ (COSAC)

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  173. Is it time to secede from the union? I know that the APA in its DSM-5 has decided that there is no difference between people with Asperger's Syndrome and people with severe autism. But we all know better. Autism Speaks has even publicized research that shows a difference. Autism Speaks does what it does very well for the people it is set up to serve. But that isn't us. Shouldn't we have our own advocacy group centered around neurodiversity rather than a cure?

    Maureen Casile
    mcasile.com

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  175. Yes. Thank you. Autism speaks does not speak for my son.

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  176. John, I respect your decision because it's your own, and I understand your stance all too well; I had to step down in a similar situation where reactivity drove the bus rather than proactivity. Nevertheless, I revel in the thought of who might fill your seat because change could go either way. My prayer is that Autism Speaks will rise above the current status; people with autism need a positive voice in this world! Thank you, and keep sharing your gifts with the world! Sincerely, Treva Maitland

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  177. John, that was a highly accurate statement and well done. I think I might have criticised you for trying to change things from within not long after you joined and I admit to feeling somewhat vindicated with that now. No offence intended of course. I've known for a long time now that you can't change people like Wright - or Doherty it appears, or anyone else who uses hate speech to describe the Autistic Spectrum as Cherie did. They don't understand and they don't want to understand.

    Autism Speaks is not the same as the IACC as Kulp tried to state, and I think you know that as well. So I certainly don't expect you to resign from that.

    Keep up the good fight, mate!

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  178. Thank you so much for your stance. I greatly appreciate hearing the voices of other adults on the autism spectrum. Best wishes and gratitude.

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  179. Thank you for your eloquence, and for putting the voice of my son first, before the "parent/grand parent" and community voice.

    I live each day with full knowledge as witness to my son's absolute gifts to this world. It is more our challenge as a society to embrace and not destroy those who embody the gifts. Yes, Suzanne Wright described many of my days, and seasons - but John described the way forward for my family.

    Your metaphor of fire has to be the most powerful I have read in the last ten years. Thank you.

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  180. Thank you. :-) I wish I could think of something more profound to say, but emotions are one thing for me, and words are another ... so I can only say 'thank you'.

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  181. I've often thought Autism speaks spent too mucy money on actual fundraising and administration. Thanks for the other links.
    JoAnn

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  182. "No one says the Cancer Society does not speak for them."

    Actually, they do, in different words:

    http://youtu.be/3QPZfcYTUaA

    I pray that one day that Autism Speaks will be exposed the way the Susan G. Komen for the Cure organization has been.

    There needs to be major changes in the way health care operates in our country. John's decision is a big step in the right direction.

    Feels good.

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  183. John;

    When I co-authored “Chicken Soup for the Soul, Children with Special Needs” with Jack Canfield, Mark Victor Hansen and Heather McNamara, the biggest dilemma we faced was what to call the book ,as folks both did and did not want to be labeled in certain ways. It was reported to be the most challenging title the Chicken Soup people wrestled with to date. What we learned was that people on the autism spectrum and other spectrums for that matter, are people first before their condition!

    Some of my favorite people are on the autism spectrum! My dad, my son, Stephen Shore, my sister (maybe) and even a bit of me! When my son was diagnosed in 1992 I embraced his autism and mostly tried to focus on his gifts, strengths and talents rather than the deficits he displayed at the time, after I got over the initial denial of it all. Of course I had the same challenges families face in those beginning years and could have chosen to have a negative attitude and chose instead to focus on the positives as much as I could. As part of his early intervention, before the days of behavioral interventions, I wasn’t about to wait around for science to prove to me whether certain methodologies were legit or not. I just wanted to find tools that would enable him to have the best life he could have.

    Of course I used my own “mom” common sense compass, built into most moms, though I tried things to help my son that were not necessarily science based. They were “mom” based. My real question is who are we to “fix” people? All people are broken in some way, and to different degrees. ALL people have different ways of being though certainly no one is “better” than the next person. If we feel with our hearts and souls while helping people through tough times, in whatever way makes sense at the time, the world will be a better place!

    Our time on the planet is all-together too short to waste on efforts that take an extraordinary amount of time to prove one way or the other. Often, by the time double blind studies are concluded, methodologies have changed. Don’t get me wrong, I’m not a Polyanna, with an altruistic view, and I do believe in research with a true return on investment. I propose that we focus to create a better overall society that promotes everybody flourishing.

    Autism is not a disease, an illness or a disorder, it’s a different order and people on the spectrum as well as other spectrums, are wonderful souls and deserve the best, most successful lives, whatever that might look like. Thanks for being you, John!

    Karen Simmons
    CEO, AUTISM TODAY

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  184. Thank you. I was actually victimized as a result of an awareness campaign by Autism Speaks.

    I can't possibly thank you enough for acting on your thoughts.

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  185. Thank you, John, for taking this public stand about your decision. I have read through many of the posts here. I see the comments of many Autisics, and of parents, whom I am proud to know. Please keep speaking out on things the world needs to know about Autism.

    Donna Downing
    Autism National Committee

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