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Autism Speaks cofounder Suzanne Wright's recent blog post dehumanizes autistic children and labels their parents as victims.  Autism Speaks raises nearly $60 million a year in the name of autism but only 4% goes toward direct services.  They are widely disliked by autistic adults and many family members for their complete failure to include autistics in their organization.  They use horrific negative stereotypes of autistic children to market their charity.   I am an autistic adult and my daughter and my brother are autistic too.  I'd like for my daughter to have the opportunity to talk with a major supporter of Autism Speaks, Doug Sanders, President of Sprout Markets, who has a grocery store here in my neighborhood.   My daughter is a talented artist, passionate, and she's better at public speaking than I am.  If he got to know an autistic young adult, I thnk he'd be pretty impressed, and he just might rethink his views.

Letter I am sending to Doug Sanders, President of Sprouts and major supporter of Autism Speaks.

November 14, 2013

Doug Sanders
President, Sprouts Market
Corporate Office
11811 N. Tatum Blvd., Suite 2400
Phoenix, AZ 85028

Dear Mr. Sanders,

My name is Cinder McDonald. I live walking distance from your store in Tempe and as a gluten intolerant individual, I shop there often. I have a 21-year-old daughter, Kyla, and a 41-year-old brother, Craig, who are on the autism spectrum like your son. You and I are alike in that the cause of autism is near and dear to our hearts. I fear, though, that we may have very different views on how to be the change we want to see happen for our loved ones with autism.

I see the Autism Speaks signs and logo every time I visit your store. I've visited the local Autism Walk where Sprouts gave away boxes and boxes of swag to participants. I understand that Sprouts has raised over $3 million dollars for Autism Speaks thus far. What you need to know is that not one of those dollars came from my family, my friends, or any of the many dozens of individuals with autism or their families that I personally know in the Phoenix area

There have been many more reasons to dislike Autism Speaks than to like them. I can quote statistics, easily verified, about how little of the money goes towards direct services for people with autism. I can talk about how their executives are paid some of the highest salaries in the nonprofit world, yet have done nothing to address one of the most serious issues in the autism world, that of the alarming stories of parent/caregiver murders of autistic children and adults in their care. I can talk about how they are, in the words of advocate John Elder Robinson, “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." He was their token, the only autistic individual to have any sort of role in all of their entire organization. He announced his resignation on November 13th, saying “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.”

What I want to talk to you about instead is what Suzanne Wright said in her call to action on November 11th.* I'd really like to know what your family thinks about the things Suzanne said about individuals with autism and their families. She says that families with autistic children are "not living", but simply existing "in despair". Is that true in your house? How about this:

“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.”

When my daughter read this, she said, “I'm not a monster. I wish they'd stop thinking of me that way.” Suzanne Wright's vision of a family of an autistic child is a horror story. But then, it's the fear that brings in the big dollars, isn't it? My daughter was 16 when she first became aware of the Autism Speaks commercials playing in constant rotation on TV. Until that point, I hadn't made up my mind on Autism Speaks and she had no idea of who they were. She alternated between crying and rage. She kept asking why these people thought she was bad. I didn't have an answer to give her that day.

Mr. Sanders, my daughter wants to meet with you to ask you why you give money to Autism Speaks. Because there is more to autism than fear and despair.

Sincerely,

Cinder McDonald

Suzanne Wright’s blog
*http://www.autismspeaks.org/...

Some Responses:
http://jerobison.blogspot.com/...

http://www.forbes.com/...

http://www.autism-society.org/...

http://www.disabilityscoop.com/...

Since writing this letter, The Arc and Psychology Today have also issued statements about Autism Speaks

http://blog.thearc.org/...

http://www.psychologytoday.com/...

Mon Nov 25, 2013 at 3:44 AM PT: My daughter made a video asking you to sign the petition...https://www.youtube.com/...

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Comment Preferences

  •  There is a lot of isolation and frustration (7+ / 0-)

    that goes along with autism.  I don't know why you disagree with Suzanne Wright on that point.  Perhaps  your daughter is high-functioning and life is much easier.  

    In our home, it has been one crisis after another.  We count the smallest of things as huge milestones.  Our son is 16 and non-verbal.  He has no fear.  He bites himself through the skin.  I could go on and on but it is too painful to recall the past.  If he could communicate, we would be in much better shape, but his and our lives are turned upside down from not being able to communicate.

    Autism Speaks has steered us into the direction of getting help and we are on the list for the NIH oxytocin study starting in January for one year.   Any help that isn't kooky or flat out dangerous (like the anti-vaccine crowd) is welcome.  I am grateful for the research they fund.  

    Nothing fixes a thing so intensely in the memory as the wish to forget it. - Michel de Montaigne

    by Sandy on Signal on Sun Nov 17, 2013 at 05:29:33 AM PST

    •  My heart goes out to you. Our son was non-verbal (2+ / 0-)
      Recommended by:
      Sandy on Signal, gramofsam1

      for years, and those were the darkest days. His inability to communicate would lead him to bash his head repeatedly on our stone floors (we lived overseas where that was the norm). It's families like yours who need the help those studies offer.  I'm afraid all I can offer is a pointless digital hug, but it's yours if you'll accept it.

      •  (((Shuruq))) (0+ / 0-)

        Thanks for the hug!.  Hugs to you, too.

        Glad your son is able to communicate now.  Does he talk?  Sign? Or use the I-Pad?  Any help you can give me, I would be so grateful.  

        We use a schedule and I-pad.  Things go horrible for us when there are changes in the routine.  This year, Christmas break is 3 weeks long from December 19th - January 9th.  Already doubling on speech therapy and horseback riding.  

        Nothing fixes a thing so intensely in the memory as the wish to forget it. - Michel de Montaigne

        by Sandy on Signal on Sun Nov 17, 2013 at 01:06:55 PM PST

        [ Parent ]

    •  yes but.... (0+ / 0-)

      pre-natal testing will only lead to the elimination of ALL autistic individuals... not just those of us severely affected by our conditions.

      i do not know about your family members... but i value the perspective that my condition provides me, and while autism speaks -may- have provided you with information about the NIH oxytocin study that you will be participating in... it is not funding or providing support for it in any other fashion.

      further, they go out of their way to conflate other unrelated medical conditions with autism in order to fear monger the families of autistic individuals draining away much needed financial resources. while paying themselves (suzanne) 600k per yea... while being a billionaire to begin with.

      so to re-iterate...

      we have an organization that is engaged in unethical research... fear based media campaigns... with inaccurate portrayals of the realities of the daily lives of autistic individuals.

      i understand that you can feel overwhelmed sometimes, but that does not make autism speaks any less guilty.

    •  Points to consider (0+ / 0-)

      My brother is nonverbal, and I have known many individuals and families over my 40 years in the autism world.  I was the one who taught my brother his first sign at the age of 5.  I was 11.  You think it's hard now, imagine the challenge my parents faced in the 1970s.  It was the time before IDEA, before ADA.  No habilitation, no respite, no special ed classes at public school.  My mother had to sue the state to keep them from shipping my 8 year old brother to 3 states away.  Believe me, I DO understand your challenges.   I've lived it.

      Can you really trust an organization that lists a school that has killed students in its use of electric shocks in its research guide?

      Don't you find it odd that they don't include people with autism within their ranks?   There is no other major disability or medical organization out there that has so excluded the very population they're purporting to be helping.  

      When Christopher Reeve asked researchers to visit rehab centers and talk with patients, it changed spinal cord research, and tremendous advances have been made.  No one is more knowledgeable on autism than those of us who live this life.   You can be dismissive of those of us who are so-called "high functioning", but consider that in my childhood, I was more effective at teaching my brother how to communicate than any of the professionals out there.

      I'm glad you found some help for your son, but I urge to seek out to seek out the adult autistic community, particularly people with autism who are working in the field.  For instance, I know speech pathologist assistants, occupational therapists who routinely do the amazing with those considered "unreachable".  You might be very pleased with the results.

  •  Fine first diary, CinderMcDonald. (0+ / 0-)

    I hope your letter produces results!

    Best to you and your daughter.

    Welcome from the DK Partners & Mentors Team. If you have any questions about how to participate here, you can learn more at the Knowledge Base or from the New Diarists Resources Diaries. Diaries labeled "Open Thread" are also great places to ask. We look forward to your contributions.

    "The opposite of war isn't peace, it's CREATION." _ Jonathan Larson, RENT -9.62, -9.13

    by BeninSC on Sun Nov 17, 2013 at 06:18:03 AM PST

  •  Yeah, that's a tough one. I just read the blog in (2+ / 0-)
    Recommended by:
    dle2GA, gramofsam1

    question. If she hadn't set the tone with this:

    Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

    These families are not living.

    They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.

    I would have agreed with every word.

    Granted, that's all true. Absolutely true--and you can add to that "what ridiculously specific rule have I failed to come up with to protect my children?" Those of you with kids on the spectrum will understand that comment. We have three on the spectrum, and everything she said maintains true even though ours are high-functioning in most, not all, ways.

    But being true isn't the same thing as been "the truth." It's true that our children are at the heart of issues other families don't deal with. It's true that my kids often leave me baffled.

    But what is THE truth is that we're a loving family that is absolutely living, thank-you-very-much-you-judgemental-woman. Ahem.

    My kids see the world through their own filters, but often more accurately, big picture, than others-certainly other children. They have deeply kind hearts and are keenly tuned to social justice. They aren't prejudiced in any way, and the concept baffles them.

    I treasure them and they treasure me and their dad. They show love in bizarre little ways that others might not recognize, but they show it all the time. When my

    We most certainly do much more than exist, Ms. Wright. Bby using the number she did--3 million--she's including the entire spectrum, including my children, the diarist, etc.

    •  I think you hit the nail on the head- (1+ / 0-)
      Recommended by:
      Shuruq

      it's the inclusion of the entire spectrum that makes Wright's description so offensive to many.
      When my son was diagnosed in 1970, there was no spectrum designation. And trust me, to get a diagnosis in those days, the child had to be at the most extreme end of what we now call the spectrum. Every word Wright said would apply to our son and our family in those days- we often went days at a time with no sleep at all. (And we all, including my other kids, have the sleep disorders to prove it).

      My granddaughter, on the other hand, is so high-functioning that most people who don't know her well think she's just shy, if they notice anything at all. Her diagnosis is shared on a need-to-know basis at this point, with selected staff at her school and with trusted family and friends.

      She doesn't know about it yet- and that is very much against our policy of being forthright with kids. We're trying to figure out the best way to talk to her about it without scaring her- and statements like Wright's make that more difficult.

      But it's not all Wright's fault. We should be smarter about diagnosis and labels. A system that will make my granddaughter think "I have what Uncle David has" is a ridiculous system.

  •  One other thing, Suzanne did not dehumanize anyone (3+ / 0-)
    Recommended by:
    doc2, misslegalbeagle, gramofsam1

    what she said is accurate for many of us.  She also called for a national plan now.  What is wrong with that?

    Here's her Call to Action that you find so offensive:

    This week is the week America will fully wake up to the autism crisis.

    If three million children in America one day went missing – what would we as a country do?

    If three million children in America one morning fell gravely ill – what would we as a country do?

    We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

    We’d leave no stone unturned.

    Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.

    We’ve let families split up, go broke and struggle through their days and years.

    No more.  Tomorrow in Washington, D.C. we will gather an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit.  We will demand a national response.

    Don’t our families deserve it? America has always been about its great people.

    Yet, we seem to have forgotten our children - and our children are our future.

    Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.
    These families are not living.

    They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.

    This is autism.

    Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  

    This is autism.

    On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally.  Physically.  And especially emotionally.

    Maybe they have been up all night caring for their teenage child who’s having a seizure.
    Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.

    Maybe their child has been trying to bite them or themselves.

    Maybe they can’t afford the trip to a doctor specializing in autism.

    Maybe there is a waiting-list for ABA, speech and OT.

    Maybe their insurance won't pay.
    Maybe they don’t have the money to pay a special lawyer to fight for school services.

    This is autism.

    If any of this sounds familiar, you know autism.  And if you know autism, you know we are looking at a monumental health crisis. And, we have no national plan.

    What I described above is really just the beginning.  In the next ten years, 500-thousand Americans with autism will be growing up and out of the system which means they will no longer qualify for the services they rely on every day.

    And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill?  How long before they break?

    And, if they do – who cares for these children?

    There is no national plan to build a city for 500-thousand people.

    So let’s dial back a minute and consider the babies being diagnosed with autism every day in this great country. Do we have a plan for them? Are they all getting the same medical care and therapies across the board? Are we doing anything to guarantee they get a fair shot at a productive future?

    We know children from minority and lower income families are not getting diagnosed as early as they should be, so their treatment begins later which might decrease their chance at progress.

    How about in school?  Is there a national curriculum for our children?  Are we encouraging teachers around the country to share with each other lesson plans and methods that work for them? Is there collaboration?

    But - there is no national plan.

    Yet - our future depends on it.

    Financially, we estimate it costs 2.3 million dollars to care for one person with autism for their lifetime, and it will be well over $137 billion dollars for all our children.

    But money aside, these are our children.  The late scholar Neil Postman once wrote “Children are the living messages we send to a time we will not see.”

    What is our message?

    We can’t even craft one – without a national plan.

    Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

    This is a national emergency. We need a national autism plan – NOW.

    We are heading to Washington with a call for action on a national plan – NOW. We are asking our leaders to respond to autism with the urgency it deserves – NOW.

    Washington – here we come – because we need to help our families – NOW.

    Suzanne Wright and her husband Bob co-founded Autism Speaks in 2005.

    Nothing fixes a thing so intensely in the memory as the wish to forget it. - Michel de Montaigne

    by Sandy on Signal on Sun Nov 17, 2013 at 06:21:46 AM PST

    •  why it's dehumanizing. (0+ / 0-)

      First off, I'm not alone in saying this.  The Autism Society of America, The Arc, Psychology Today, Forbes, and hundreds of blogs have written very eloquent responses explaining it.  I doubt I can write anything that is more persuasive than what is out there.   I listed some links at the end of my post.  I hope you read them.

      I feel sorry for you if you can't read what Suzanne Wright said and see plainly why this is so fundamentally wrong.  I shouldn't have to explain to you or anyone that autistic people are human beings, and we are deserving of the same respect and dignity afforded other human beings.   What can I say to bridge the "us vs them" divide that exists in your mind?

      We are not monsters.
      We do not destroy the lives of our loved ones.
      Everyone on the Spectrum is capable of love and of being loved.
      We want to be accepted for who we are.

  •  it's strange to me that you (2+ / 0-)
    Recommended by:
    Sandy on Signal, misslegalbeagle

    criticize this merchant's public support of this autism charity. But you don't say which autism charities he should support. Seems to me an example of the perfect being the enemy of the good.

    •  Charities (0+ / 0-)

      I didn't mention my preferred charities because 1) I think people should thoroughly investigate for themselves any charity before donating of their time, money or energy.

      2)  Because I think people should decide how much of their money they want to go towards research and how much should go towards services.   In my opinion, does it really make sense to focus so heavily on research when 9 out of 10 autistic people don't qualify for services and practically no child with autism (except for the very wealthy) receives enough services to prepare them for adulthood?  

      3) Shouldn't we, as parents, as family members, support a charity that believes in the potential of our children, no matter where they are on the Spectrum?   My brother, who is considered too "low functioning" for vocational opportunities or any independent life skills, has taught me more about life than just about anyone I've ever met.  He taught me about love and prejudice and acceptance and hope.  He taught me to look at the world in a whole new way and I am enriched by being his sibling.

      4)  Finally, because most of the work of helping families with autism comes from small, local nonprofits who don't receive any funding from Autism Speaks.  If anything, A$ draws funding away from those doing the work.  I urge you all to explore your own communities and verify this for yourself.

  •  My ASD son just turned 18. (0+ / 0-)

    He's still in school and will graduate next spring. He speaks quite well but is basically illiterate. He won't be able to drive nor get any kind of job. He has very little situational awareness. He is very obstinate.

    I think the whole model has failed. I'm sure everyone did their best but as soon as he turned eighteen they're telling me that I should just put him in a home. I find that very unsatisfactory.

     He has made a lot of progress. I read studies that claim that the brain keeps changing well into one's twenties. I have hope, but there is a lot of fear, despair, isolation and frustration.

    So as to Autism Speaks, maybe their model also sucks. It can't hurt to have the conversation. Or will we just fall back on our usual "Kick down the barn".

    We're fools whether we dance or not, so we might as well dance.

    by PowWowPollock on Sun Nov 17, 2013 at 06:41:33 AM PST

    •  Did the school system test him? (0+ / 0-)

      Is this how he got the autism spectrum diagnoses?  If so, they are suppose to provide services for him until he is 22.  Who is telling you to put him in a home?  That isn't right.  

      Stand up for your son and get him services.  We were on a list for ten years but now have some help even in our home.  Contact the state and school system for help.  He is still a child and they can help.  

      Nothing fixes a thing so intensely in the memory as the wish to forget it. - Michel de Montaigne

      by Sandy on Signal on Sun Nov 17, 2013 at 06:48:41 AM PST

      [ Parent ]

      •  it's not reality (0+ / 0-)

        What the law says and what happens in real life are two different things.  There is extreme gatekeeping in every state to keep autistic young people out of services.  I read a recent survey that said that over 60% of young adults with autism received no services after high school.  I think, if anything, that figure is optimistic.

        Any kind of "plan" however, MUST include a wide representation of people with autism.  Whether individuals communicate verbally, or by sign or via AAC or iPad, they need to have a seat at the table.

        If you look at the history of Autism Speaks, you'll see that they have done the opposite.  That is frightening.  Autistic people are included in other autism organizations such as the Autism Society of America and The ARC.  As human beings, we deserve respect and the opportunity to speak and be heard in our own voice, whatever format that takes.

    •  It can get better... (0+ / 0-)

      Young people with autism mature more slowly.  What I have seen as an average for those that I know is employment around the age of 25 and independent living around age 30.

      I cofounded a group for families of teens and young adults when my child was 15, (she's 21 now).  There is tremendous power in families and young people getting together.  Parents found support and education, young people created their own community.  The other cofounder's son is engaged and living in his own apartment, my daughter is attending college fulltime and is able to go into the community on her own.  Autistic young people are like any other group of young people - they need friends, they need a social group, they need activities to get them out of the house.  This was all done on a shoestring budget, in donated space.  There is so much that a resourceful parent can do.

      I used to be as pessimistic about my child's future as you sound.  Not any more.   Have hope.

  •  I think there are two separate issues here. (0+ / 0-)

    One, this charity has high expenses. That's certainly a legitimate concern and it makes sense not to contribute to it. FWIW, their expenses are about 40% which is high but not exactly enormous.

    http://www.charitynavigator.org/...

    Another is the use of scare tactics. However, many charities do that. And the description may be true for some severely autistic kids.

  •  One of the more mystifying aspects of the US... (0+ / 0-)

    ...for foreigners is that we have advocacy organizations for diseases and disorders and whatnot.  The idea that with sufficient mobilization we can address issues of brain something-or-other (and that's apparently where we are...we can't even characterize autism beyond that) will, I suspect, someday be remembered in the same breath as Stakhanovism or Mao's interest in resolving, through dialectical materialism, the contradictions of the tomato.

    My comments are coming from a place of love.

    by Rich in PA on Sun Nov 17, 2013 at 07:36:28 AM PST

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