Friday, March 23, 2012

Don't Support Autism Speaks

With April drawing ever nearer, the likelihood that you will be asked to donate money to Autism Speaks approaches one. I encourage you not to give them your money, and this is why:

1) Very little money donated to Autism Speaks goes toward helping autistic people and families: According to their 2010 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services:

While 44% of Autism Speaks’ budget goes toward research, only a small percentage of these funds go towards research into improving the quality of life of autistic people. Most of the research which Autism Speaks funds is devoted to issues of causation and “prevention,” including the prospect of prenatal testing.

2) Autism Speaks talks about us without us. Not a single autistic person is on Autism Speaks’ Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes.

3) Their fundraising strategies promote fear, stigma, and prejudice against autistic people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks’ advertisements and “awareness” campaigns portray autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

4) Autism Speaks is not financially responsible. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with some annual salaries exceeding $400,000 a year. Additionally, their fundraising expenses exceed their spending on most of their core programs. Given these facts, Charity Navigator rated their financial health as 2 out of 4.

If you would like to donate money to organizations which help autistic people, I recommend:

- The Autistic Self-Advocacy Network (ASAN), which provides support, community, and public policy advocacy, by and for people on the autism spectrum.

- Academic Autism Spectrum Partnership in Research and Education (AASPIRE), which
brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of people on the autistic spectrum.


  1. True, true, true.
    Is it OK if I share this?

    (by the way... i've been following your blog for a while but I don't think I ever made a comment so "Hi!")

  2. According to their accounts, their income was just over $50 million in 2010.

    Distributed equally, servicing the estimated 50 million autistic people worldwide who are 'served' by Autism Speaks, this amounts to a dollar each.

    Half a dollar each really, because half of it is 'essential' spending for the fund raising, awareness and administration.

  3. Hi Saia! Thanks for your comment. Of course it's fine to share this; I encourage people to get the word out, especially with April so soon.

    Loka, that is a very good point. Autism Speaks definitely takes credit for a lot more than they actually do.

  4. They apparently waste a lot of money. But I don't get how the research that they fund now, to the extent that it succeeds in discerning causes and remedies, wouldn't be involved in improving quality of life, considering what removing impairments could do for autistics' lives.

    I wonder what kind of services they could fund for individuals considering how expensive they usually are, like Loka mentioned. I think the government needs to be responsible for providing services.

  5. A lot of what they're funding is genetic stuff, which seems to me more applicable to a prenatal test than to any treatment that could help someone who already exists. They also spend a lot of time and money trying to make flies and mice autistic, which is pretty damn useless to our community right now.

    I agree that the government should provide more money for services, but I don't think that means that Autism Speaks' money is well-spent. I find it particularly obnoxious that they raise so much money from walks within local communities, and then so little of that money ever makes it back to help those communities.

    1. Zoe,

      It appears you may not be aware of Autism Speaks current research evidenced below quoted from the organization's website. While it is understandable if you don't agree with the research, it is evidenced as valued research to others across the spectrum.

      While 4% of Autism Speaks funding may not sound like a lot, it is actually well over a million dollars provided in support to individuals on the spectrum.

      There are no other non-profit autism advocacy organizations evidenced in the US, as providing more money than this as direct aid to individuals on the spectrum. The research quoted below is evidenced as vital to the overall spectrum as the direct support they provide in family grants, and other programs.

      "Autism Speaks 2012 Research Emphasis Areas
      Autism Speaks supports global biomedical research into the diagnosis, causes, prevention, and treatment of autism or its disabling symptoms. Our mission is to improve the future for all who
      struggle with autism spectrum disorders. In support of that mission we provide funding along the entire research continuum ‐‐ from discovery to development to dissemination ‐‐ for innovative projects that hold considerable promise for significantly improving the lives of persons with autism. Autism Speaks research funding will be restricted to projects that address one of the following priorities:

      • Understand environmental risk factors and their interaction with genetic susceptibility to
      enable prevention and improve diagnosis and treatment

      • Discover biomarkers that can improve risk assessment and subtype stratification that will allow
      for an individualized approach to treatment

      • Improve quality of life through more effective medicines, behavioral interventions, and

      • Enhance diagnosis and treatment of underserved and under‐studied populations, specifically,

      o Nonverbal persons with ASD
      o Ethnically‐diverse and/or low resource communities
      o Adults
      o Those with medical co‐morbidities

      • Disseminate and implement evidence‐based clinical practices to the broader community"


    2. Well over a million dollars? That's not much, when it comes down to it. As an autistic adult, my therapy costs are between $600-1000 per month. That's $7200-12000 per year. Let's round it to $10000 per year and say that also includes the medication I take for anxiety. That doesn't count for my medical issues related to autism or other expenses related to autism.

      So, let's say they give away two million dollars a year to help those who need it. My amount needed ($10k) annually is 0.5% which would mean only 200 individuals in the same situation I am would be assisted by their two million dollars. Many people with autism need far more therapy and far more medical assistance than I do. MANY more than 200 individuals.

      So how is "well over a million dollars" being donated, to those on the spectrum, at all substantial?

      Sorry, but no.

  6. Gene therapy is becoming advanced, and could be used with genetic knowledge. A lot of research has to be done and it will require time, but it needs to start sometime, and will be very helpful when it makes treatments possible. I wonder how that money could help in those communities. There are other charities that can focus on things like services.

  7. All other issues aside, one of your gripes with Autism Speaks is that they don't donate enough money to improving the lives of those with autism (called "Family Services"). Which is a legitimate concern, I understand.

    But it's not valid, not in this case, because that's not the point of Autism Speaks. That's not its mission.

    Taken from their website:

    "Since then, Autism Speaks has grown into the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families."

    They are dedicated to "funding research into the causes, prevention, treatments and a cure for autism." If it said that they were intending to fund the aid of individuals with autism, and yet they spent 44% of their money on research, there would be a problem.

    Now, they could have other problems. That's not what I'm addressing. I'm just addressing this one issue.

  8. Hi blewishgirl,

    A lot of people donate money to Autism Speaks thinking that the organization supports families, so I felt it was important to point out that it actually devotes very little funding to giving back to the community and providing support.

    I also have a probelm with the kind of research they fund - as I mention before, I don't relish the prospect of a "cure," a prenatal test, a new kind of chemical restraint drug, or the creation of flies and mice which some NTs think act autistic.

    1. Zoe,

      As quoted above and evidenced in my last reply autism speaks is neither funding a prenatal test, or chemical restraint drugs.

      The intense world theory of autism by Henry Markram, supported by many individuals on the spectrum, is based on mouse studies; that theory would not have been possible without the inclusion of mice to study. Autism Speaks did not fund that project. But mouse studies, are a vital evidenced part of autism research among research organizations across the globe.

      Autism speaks has funded over $400,000 to MIchelle Dawson's research group comprised of individuals on the spectrum. The research that Autism Speaks funds is diverse, and evidenced as provided to research scientists that support the neurodiversity movement.


    2. Zoe,

      Thank you for writing this and helping inform NTs of the autism community's concerns.

      "Cure" and "recovery" are words you use for drug addicts and people who are sick. Autism is not an illness! I have Asperger's Syndrome, so does my 8 year old. I have an 18 month old who is a nonverbal autistic kiddo. They (and I) are not burdens to society. My children are not burdens to me or my husband. We enjoy our diversity. The people running Autism $peaks HATE neuro diversity in any way shape and form!

      And if there was to be a "cure', how would it be implemented? Would the government then force all autistic persons to conform and get "normal'? And how would this "one size fits all" cure be effective? Autism is called a spectrum disorder for a reason! There are those who can barely even function to people like me who hold several degrees, can hold down a job, and raise a family. So how would this "cure" work in the real world?

      Also, with prenatal testing, who is to say that mandatory abortion laws would come into effect? I was encouraged to have an abortion in 2011 when I became pregnant with my now 18 month old. Why? Because my other daughter and I are on the spectrum and my OB-GYN actually said, "Autism is too hard for anyone to handle. You should abort and get fixed.' And, yes, I have that on tape. I learned a long time ago to tape conversations with doctors and other so called professionals. Well, since I didn't have an abortion, my OB had social services called. MY OB TRIED TO HAVE MY CHILDREN TAKEN BECAUSE OF A FAMILY HISTORY OF AUTISM!! So, do I support ANY research that AS does? Not on your life!!

      We really need to spread autism awareness. Not fear and stereotypes. And we need to put our money where the real help is...not into making flies and mice autistic. We should not play GOD with ourselves or our children!

      Thank you so much for this post. I am now a follower!!

  9. Dear Zoe,
    It looks like you despise Autism Speaks because they purport to help autistics, but mainly help themselves. I, too, despise Autism Speaks for those same reasons you've mentioned, but I also understand their way of thinking.
    (Their thinking: find cure for autism, then everything will be okay, no more screwed up kids.) If you look at how Autism Speaks began, you will comprehend why they give virtually no money to families of autistics. It was founded by Robert Wright (former CEO of NBC Entertainment) and his wife Suzanne, after their granddaughter was diagnosed autistic. When their precious loved one is affected, nothing can stand between rich people and their need for a cure. In their haste to root out the cause of autism and kill it, they have very little room for helping out affected families. After all, (in their way of thinking) if they cure it, there'll be no need to spend money on psychiatrists, medication, therapies, etc.
    Point 2: There IS an Aspie on their Scientific and Treatment Advisory board, John Elder Robison. Read his blog about it here: He believes that changing their system from the inside works better than picketing from the sidelines. As an Aspie myself, I agree. This organization will likely NOT change just because some group of people tries to shame them into doing a better job of helping the families of autistics.
    Point 3: They employ fear & stigma as fundraising tactics. It WORKS! They're not the only group which does this. They are not dumb; they see how effective it is to trot out the feeble and disabled (like Jerry Lewis does) and employ their "help the pitiful child who can't help but eat his own feces" routine in order to put cash in their coffers.
    Point 4: Very high compensation for executives. Yes, their president & other executives are paid EXTREMELY well. It looks like Autism Speaks wants to recruit & maintain rock stars, not social workers. Otherwise, why the very high salaries for what amounts to a low-pressure job. How do they compare with other autism advocacy agencies? I'm not sure how they compare, but my guess is that they probably pay FOUR TIMES as much as the average compensation for comparable positions.

    1. CREW,

      Point one you make is reasonable except for the fact that the founder who is evidenced as having a great deal of resources and influence, has afforded many less advantaged families support through advocacy efforts through the organization, that have led to the expansion of insurance coverage nationwide in various states.

      Point two is reasonable. And it is also worth mentioning that while Autism Speaks has not yet appointed anyone on their main board of directors on the spectrum, 10 of those members have children on the spectrum as compared to the Autism Society of America with 1 of their active board of directors disclosing a diagnosis of Aspergers, 1 member with a child on the spectrum, and 1 member with an adult son on the spectrum.

      Point three is a proven marketing requirement for charitable organizations, but the lion share of the organizations current PSA's and images of children on their website portray children on the spectrum as happy and well adjusted as any other child in society.

      Point four is correct that they pay their employees the highest salaries in the autism world, but one would reasonably expect that since the organization is the largest autism advocacy organization in the US. Beyond this, the charity navigator organization linked, provides a separate report on CEO salaries for comparable sized charitable organizations in the Northeast and Autism Speaks CEO salary falls within the median range of those CEO salaries.

      And while the Charity Navigator organization rates Autism Speaks 2 out 4 on the financial element, they do receive the overall highest rating of any autism organization rated in the US, with 4 out 4 stars on accounting and transparency, and 3 out 4 stars overall, matching the same star ratings as the Autism Society of America, an organization that ASAN endorses.


    2. Ron,

      I LIKE the way you think! I am also an Aspie and LOVE every single minute of it. But having an organization tell me that I am some sort of disease that needs to be cured and eradicated as soon as humanly possible is totally b.s. I hate Autism $peaks' hate tactics. Their crap has caused my own mother to not have anything to do with both of her granddaughters, my children, one is an Aspie and my toddler is completely nonverbal at almost 2 years of age! Autism $peaks can kiss my butt! Point is, if you are not rich in America, you get no services for autism. Thanks for all your hate campaigns Autism $peaks!

  10. They gave us $1000.00 for daycare last summer and all I had to do was ask....Give it a try.

    1. I'm happy for you. Can you share the process that you went through to get the money?

    2. Sent a e-mail to Autism Care's....Part of Autism Speaks...and they sent a check to our provider for the summer's daycare.....I'm a single dad.....daycare for a specialneeds child is out of control...It allowed me to work and care for my father who passed away in july..we paid them back with the memorial money that we dedicated to autism research....they were very kind and caring...easy to work with.

    3. I think that sounds really great. I wish they spent more than 4% of their budget on helping families like yours.

  11. I think that Autism Speaks is trying to help as many as possible - they've graciously granted funding to companies such as Cognitopia Software for work developing software support tools for self-management and independent living needs.

    I believe Autism Speaks is one of the few resources that truly tracks an overview of the autism surge that we are experiencing globally. Don't be too quick to dismiss them - they really do help families

  12. More money should be going to the families than the executives. It can get very expensive to take care of an autistic child, especially if it is a single parent household.

  13. Greetings Saia! Much obliged concerning your remark. Obviously its fine to offer this; I sway individuals to get the saying out, particularly with April so soon crowdfunding platform .

  14. I have a son on the spectrum and I truly do not like Autism Speaks I did support them on the past until I started looking more into it. They want a cure there is NO cure and there probably never will be. They are in essence providing job security for a few researchers and providers and administrators that are WORMS & PARASITES for lacking the integrity to take that money to deploy there fruitless measures to cure something that can only be managed. If there were such cures, there would have been cures for Down's Syndrome, Krabbe's Disease, Muscular Dystrophy, Lou Gherig's Disease (ALS), Parkinson's, MS, just to name a few conditions where we have poured billions if dollars into for DECADES with no true advancements in finding a cure or even in the management, thereof. Funds are better spent on the families and children and young adults that will need prolonged care and services than on "pipe dreams" for a cure! I am not saying that research should not be performed towards a cure but let us not lose focus on the families and children that truly need help now.
    I honestly think that they should be MADE to change their ways. Autistic people are PEOPLE not puzzles and they are not a terminal burden either. My son is very smart if he had more therapies and insurance that would pay more services he would be better off in the future.

    That is my 10 cents and that is why I do NOT support Autism Speaks.. I refuse to support their salaries!

  15. It always amazes me how people go after Autism Speaks... I agree, salaries are outrageous! But go take a look at some other charitable organizations! For example, The American Cancer Society. I recently read an article stating these CEO's of non/profits would be making millions in the regular job sector for what they are doing for their charities! Personally I think Autism Speaks has done far more good for the autism community... I know of many who have been helped by this organization, my son included!

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