What Does Autism Speaks "Call For Unity" Mean?

What Does Autism Speaks “Call For Unity” Mean?

In very few words: crisis management.
But this is an informative post, so I will give the information.

Neurotypical writer Steve Silberman just published his extensively researched book on, more specifically autism – Neurotibes. For this book, he talked to several Autistic activists.

What Does Autism Speaks "Call For Unity" Mean?
IMAGE DESCRIPTION (text reads) “Autism Speaks is the organization that excludes us, while demonizing our existence and injecting fear of autism in confused, uninformed parents, all this disguised as information. Who is being divisive?” awnnetwork.org. The background is a mix of purple pink and blue that blends together.

The book is getting a lot of press and good reviews. Steve Silberman is very respectful of our voices and reminds journalists that they should talk to us, listen to what we have to say about our own neurology. He reminds the media that what we think is important.

One of the points he made in one of the interviews (and in the book), is that we, Autistics, don’t like how Autism Speaks talks about us, without us. This is not news. Autistics have been protesting Autism Speaks since its foundation. It should not surprise anyone that we have a problem with an organization that never uses positive words when referring to us – and this is to say the least.

Some of us, including me, even started the grassroots movement Boycott Autism Speaks.

All this time we have been protesting, and Autism Speaks leadership never addressed our concerns, ignoring us, using stereotypes to hurt us. It blocked us from the organization’s social media pages.

But this time, Autism Speaks leadership responded. Not to us, Autistics, but to a non-autistic writer who is getting a lot of press, and who supports our goals, who listens to our voices. But he is not Autistic.

Liz Feld, President of Autism Speaks, wrote a “Call for Unity”, another shallow defense of the organization’s methods, saying that Steve Silberman (and Autistic adults, by proxy) was “dividing” the so-called autism community.

Note that Ms. Feld uses the term “autism community” to claim legitimacy in the conversation about autism. She fails to realize that there is no “autism community” without Autistics.

Autism Speaks is the organization that excludes us, while demonizing our existence and injecting fear of autism in confused, uninformed parents, all this disguised as information. Who is being divisive?

Different opinions are not necessarily bad. Silencing, using the privileges of money and control of the media is (Autism Speaks founders – Bob And Suzanne Wright – are rich and well connected in the world of television, entertainment and marketing).

So, what is this whole “unity” talk, since the last thing Autism Speaks wants is our participation, our voices in the conversation about us?

Autism Speaks wants to control the conversation, the media.
According to Autism Speaks, the conversation should not include our voices.
The “unity” Autism Speaks wants is around their – wrong – view of who we are.

As my friend and journalist David Perry pointed out: Autism Speaks’ call for unity is a thinly-veiled attempt to protect their brand for fundraising purposes, now that long-standing criticisms of them from within the autistic community are spreading more widely.

If we are “allowed” to be part of the big decisions about things that affect our lives, the general public will see that we don’t wake up everyday and think we are “lost tragedies burdening our families”.

The public might support our fight for inclusion, supports, respite care for parents, access to education and jobs, equal opportunity.

The general public might finally get the truth about who we are and how we deal with very real issues. Autism is a disability and it can be, without supports, impairing. We are speaking up and fighting for supports for ALL Autistics.

Reminder: I am the “poster child” for what Autism Speaks calls “tragic”. I could not always type my thoughts either.

Yet, here I am, protesting and speaking up. Not suffering, not broken. With supports I have a rich, exciting life, an interdependent life, and I make my own decisions.

If Autism Speaks wants unity, it needs to own up to its motto: time to listen.

There is no possibility for “unity” if Autism Speaks only talks and never listens to us.

Our goals are for Autistics (plural) participating in every decision involving autism. Autism Speaks goal is for one token Autistic to write something from time to time, even if it is a plagiarized piece of Autistic activists who very loudly protest the organization.

Want unity Autism Speaks? Listen to what we have to say. That’s a start.

"We Cannot Stop" by Amy SequenziaAbout the Author, Amy Sequenzia


15 thoughts on “What Does Autism Speaks “Call For Unity” Mean?”

  1. Beautifully written. Autism speeds does not speak in the UK. But they teriffy me.

    Autistics are not a problem. In fact to a huge variety of issues in the world we are a viable solution.

    1. Autism Speaks does not speak in the UK.
      Really? Why not try Googling ‘Autistica’? You might be shocked at the results.

  2. I have a 9 year old autistic son and I have learning disabilities but not autism. I agree it is very important to have the word of those who are actually living the experience of having autism but my only caution is that for all the bad of autism speaks they have provided good… They provide listings of resources for support for parents like me to help find the best support for my son. I view my son for the unique amazing child he is but I recognize the need to support him which actually every human on an off the spectrum needs at some point in life. I just caution completely pushing autism speaks off the map because with all things I believe they are a balance of both positive and negative. I appreciate hearing the voices of those on the spectrum and we need to continue those of us on and off the spectrum to educate people that we all share more similarities than differences

    1. I am not “living the experience”, I am Autistic and what you say is “the good” Autism Speaks they did not created, they just adapted from other organizations.
      Some of the information is bad information, some are not really available in some places. Many parents go without any response from them

      1. I apologize if I offended by saying living the experience that was not my intent even when words are chosen carefully it is difficult if those who are not autistic to describe autistim however my son is and I can see through his eyes and teaches me that he also teaches me that there is balance in this world and I do not believe autism speaks went to into the world with a negative intent and they have helped some and not others my only point was that not everything they do is wrong and I do not believe it is done with negative intent maybe misguided intent that is why I believe since their profile is so visible that we who are touched by autistim and those who are autistic should work to redirect their efforts to fall in line with the actual needs…I am sorry if I offended but I believe that there is a balance position and although I am not autistic I am touched deeply by it being a single father of an autistic boy who I love more than life itself and has taught me more about goodness and patience than any human alive

        1. The problem with what you are saying is that Autism Speaks did start with a negative intent. It started with the intent of erasing Autistics and it has never even acknowledge Autistics as real people. Did you know that the founders grandson is not allowed to participate in family events? The family never takes him. So, bad intentions even in their own home.

          How are we supposed to work together if Autism Speaks ignores us? We don’t have to fall in line, Autism Speaks does. We are Autistic and our lived experience has more truth than any celebrity they co-opted for their cause.

          1. I will have to defer to your expertise I do not know the history of autism speaks and I agree if the founder has done such horrendous the.n I agree with your position I guess what is important to understand that because of their notearity when I needed help finding services they were a group that I was able to find the tools to start my journey with my son they were never the end they were just the beginning because of their visability and I would hate to see anyone searching for support not to be able to find it easily. I respect your position please respect the depth of caring I too hold about this situation and understand that I try to do what’s best for my son by listening but also finding support to help him in the future when by gods design I will not be able to be there… I respect you and your position and life

  3. I had to read the blog post from Liz Feld myself. I may end up critiquing it myself on my site, but I tend not to write direct rebuttals on such topics. Having said that, her post is an assemblage of contradictions. In a “call for unity” she starts out—using the voice of Chuck Saftler for cover—splitting the autistic world into “Those who are least severely affected [sic]” and “Those who are more impacted by autism…may need …a medical breakthrough [sick, i.e., a cure] that will come through scientific funding. And those who dream of being parents one day deserve to know their children will have the best opportunity to thrive in society without the challenges that are created by autism spectrum disorder.”” It is a direct appeal to the explicit Autism Speaks pipe dream of a magic pill to make all suffering disappear, along with their sinister hope for a future without autistic people.

    After this explicit segregation, she goes on to speak of the good works done by AS for all those in the autistic spectrum, as if the division she just explicitly endorsed wasn’t mentioned. She touts all the achievements of the organizations misguided priorities while hiding the fact that useful activities represent such a small fraction of what they fund.

    This isn’t an appeal for unity. It’s a paean to hubris.

  4. Pingback: Autism News, 2015/09/06 | Ada Hoffmann

  5. no money for Autism Speaks!

    When AS doesn’t like comments they simply remove all of them which is what it appears they have done with that post plus others.. Check out the latest blog post, “Why I walk For My Brother, Jack” where AS worker Judith Ursitti puts her daughter Amy out there to ask for money for a cure for autism. The really odd part is that Ursitti has said in the past (publically) that Amy has Asperger’s yet in this post they conveniently eliminate that fact and Amy claims she has no idea what mild autism is like but severe autism (like her brother has) is apparently so bad that AS needs more money to look for a cure. The entire organization is so phony.

  6. no money for Autism Speaks!

    “Judith Ursitti is a Massachusetts mother of two children with autism spectrum disorders. Her son, Jack, 7, has severe autism, while her daughter, Amy (not pictured), who is 11, has Asperger’s.”

    The above statement is from the August 11, 2011 article, “Autism Risk “High” For Kids With Older Sibling With The Disorder.”

    Yet, look at the blog post from the recent Autism Speaks blog, “Why I Walk For my Brother, Jack”. Not only no mention of the fact the daughter Amy (who wrote the post) has any form of autism but instead leads you to believe she has no idea what mild autism is like but severe must be cured so she is asking people to donate to Autism Speaks. Her mother works for Autism Speaks. Everything about that organization is shady imo.

  7. Autism Speaks really is pathetic

    From Autism Speaks blog by Amy Ursitti regarding her brother:

    “He has been undergoing intensive in-home therapy since he was two years old, and even after ten years that still hasn’t been enough. What he needs is a cure. Some people who are mildly affected by autism say that they don’t want a cure because they want to be accepted as they are, and I think that’s good for them. It’s not good for my brother. I don’t want to speak for him, but I think autism makes his life so much harder than it needs to be. I can’t even imagine how difficult it must be to not be able to say what you think”.

    It would be interesting to know what she and her mother mean by a cure and what do they think the cure would be? A magic pill? What I would love them to know is the child isn’t receiving an effective form of communication more than likely at his ABA center. This sadly seems to be the case so many times at these centers. They should investigate RPM and give him a better form of communication instead of asking for money for a “cure” which is like wishing Santa would come down their chimney. Delusional people!

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