Stop Supporting Autism Speaks

2 04 2015

Autism Speaks Do Not Support BoycottMany people, including myself in the past, donate to Autism Speaks thinking that this corporation is the best vehicle to help support autism research and help those families who are financially crippled, who need respite desperately, who had to quit their jobs in order to care for their child, a family who may have gone through divorce because autism is TOO stressful on a marriage, etc. The physical and emotional toll is great on the entire family. Some parents have multiple children with this disease.

In about 2009 or 2010, I started paying attention to the organization that was getting all our hard-earned dollars.

John Elder Robison was the only person with autism on a board at Autism Speaks.  He resigned from the Science and Treatment boards on November 13, 2013. Read his post here. In summary he said that he could no longer be part of an organization who would not listen to his counsel. He felt Autism Speaks needed to be an organization that helped people with autism and not an organization who sought to cure him of something that is his identity. I do whole-heartedly understand this point of view. Autism is a full spectrum disorder. My son lives in a state of hell and is at risk for being abused because he is nonverbal and cannot read or write. Local author Elizabeth Moon, a mother of a person with autism, posed this very dilemma in her book “The Speed of Dark.” If a cure was available, would you take it? I would love my child no matter who he was.  If life could be easier for him, I would give him that cure even if that meant who he now disappeared. I do, however, appreciate that those people with autism who are able to share an opinion on that would not want to be changed.  I respect the feelings of the families of those people who support them.  It doesn’t mean there is a right or wrong point of view; we each have to make a personal decision about our feelings on this matter.

In March of 2015, Autism Speaks invited its 168,000 Twitter followers and 1.5 million Facebook fans to use the hashtag #AutismSpeaks10 to share how “AS has touched your life” to celebrate their 10th anniversary. Instead of receiving gushing responses on how their lives were helped, people with autism and their families took to Twitter to have a word-war with Autism Speaks saying that they don’t want to be cured and that they want their resources to making their lives better and not to “cure” them. In essence, Autism Speaks does not speak for them. Autism Speaks had delusions of grandeur if they expected people to respond because they have not helped many people at all. Autism Speaks helps itself.  Only about 4% of the money you send to them actually goes to help them.

The Judge Rotenberg Center in Massachusetts is under investigation by the Department of Justice and the FDA for the use of torture (see page 84 of the United Nations Special Rapporteur on Torture). The State of Massachusetts and disability rights advocates have been working to shut this facility down. Even despite this information coming to light, Autism Speaks has allowed the facility to recruit new admissions from families seeking resources at their fundraising walks. If you don’t know or remember about this story, here is a clip from it and a link to the 26-minute story of someone who actually previously lived there and the reasons she was given shock treatments.  (The individual has disabled embedding so this link will go directly to her YouTube video).  I am warning you–this video below is awful to watch, but how one can support Autism Speaks when they support this center?

Show Me The Money

In closely examining the 2013 tax return Form 990 and independent financial audit, Autism Speaks took in a whopping $122,141,069. Of that, $15,300,709 went to research (or 12.5% of your money) and of that amount, only 1% goes towards research on the needs of adults with autism. Of that money, $5,532,344 went to projects associated with board members of Autism Speaks (or 36% of all grant money awarded). Families received only $4,631,690 (or 3.79%) of the money you gave to Autism Speaks. Advertising (for more of your dollars) cost you $52,229,994 (or 43% of their budget). Salaries took $18,771,965 of those donate dollars (or 15.3%) and $4,528,226 in benefits and payroll taxes (or 3.7% — as much as they give to families). Thirteen of their board members make six-figure salaries. See pages 9 and 10 on their Form 990 filed with the IRS.
The problem with the Autism Speak walks is that they do not give any of that back to the local communities. Money that people are giving to support people participating in that walk goes to Autism Speaks big machine. With state budgets cutting funding to people with disabilities in general, and is usually one of the first things on the cutting block because of horrible stereotypes of people with disabilities, money you give to Autism Speaks means they might lose those dollars if you only knew about their organizations. Local organizations usually are run by volunteers who draw no salaries and the majority of their resources going directly to helping in some way.

Board members have perks, too, like getting funding from Autism Speaks for their pet autism projects. Per Autism Speaks Financial Report of 2013:   “AS has arrangements to grant a portion of the net proceeds of certain fund-raising events to partners. Amounts representing the partners’ share of net event proceeds as described below are reflected as grants in the accompanying consolidated financial statements.

Event Partner Grants
Speeding for a Cure The Gillen Brewer School — 50% of net proceeds

Atlanta Walk The Marcus Institute — 50% of net proceeds

Phoenix Walk The Southwest Autism Research &  Resource Center (SARRC) — 50% of net proceeds

Westchester/Fairfield Walk Center for Autism and the Developing Brain at New York Presbyterian — 15% of net proceeds

Winter Ball for Autism New York Collaborates for Autism — 50% of net proceeds

The Atlanta Walk had net proceeds of $542,000, 50% of which was granted to The Marcus Institute, the co-founder of which is an AS Board member.

The Westchester/Fairfield Walk had net proceeds of $968,000, 15% of which was granted to the Center for Autism and the Developing Brain at New York Presbyterian. An AS Board member is on the Board of Trustees of New York Presbyterian Hospital.

The Winter Ball for Autism had net proceeds of $2,682,000 in 2013, 50% of which was granted to the New York Collaborates for Autism, the co-founder of which is an AS Board member.

Five members of the Board of Directors of AS and two management employees are affiliated with institutions that received funding from AS. At December 31, 2013, AS had grants payable and commitments to these institutions totaling approximately $5,532,344. During the year ended December 31, 2013, AS’s expenses included approximately $3,669,960 related to awards granted to institutions affiliated with an AS Board member or management employee. Certain members of AS’s Scientific Advisory Committee and Scientific Review Panel, which are involved in the grant appropriation process, are also associated with institutions that receive funding from AS.”

Why You Shouldn’t Light It Up Blue

We have enough “Autism Awareness.” In fact, it has moved into overkill to the point where people roll their eyes when they hear someone say, “My child has autism.” They see a child in a meltdown mode in a store because of some sort of sensory overwhelm and they shake their heads or mumble to another person in the store or share “looks” about bad parenting. People with autism who have the ability to express themselves do not like Autism Speaks. Parents who have had children with autism for awhile have learned about Autism Speaks and will not support them because of their lack of assistance. The “Light It Up Blue” campaign is a direct advertising campaign from Autism Speaks. When you buy a blue bulb from Home Depot, you are supporting them. The co-founder of Home Depot is a board member of Autism Speaks.

I would like to see more “action” come from this organization instead of raising funds to support themselves.

If after all of this information you decide you still want to contribute to Autism Speaks that is your business. All I want to do is inform people so they can make a more informed choice of where their hard-earned money may go.

My son Patrick.

My son Patrick. The center of my universe

April is Autism ACTION Month

1 04 2013

April is Autism Awareness Month. Phooey. It needs to be Autism ACTION Month. We have had enough awareness. What would help us the most (are you listening Autism Speaks?) is an Autism ACTION month. We need action to help the families who are suffering RIGHT NOW, who are financially crippled, who need respite desperately, who had to quit their jobs in order to care for their child, a family who may have gone through divorce because autism is TOO stressful on a marriage, people who have had to take their children out of private facilities because insurance would no longer cover them, etc. The physical and emotional toll is great on the entire family. Some parents have multiple children with this disease.

Medicine and psychiatry have been debating the causes of autism for more than 60 years now yet we have no concrete answers and the numbers are rising. When people tell me that it is 100% due to better diagnosing, they are right to a SMALL point. But listen up! When Patrick was diagnosed (in the summer of 1997 when it was still 1 in 10,000), when I would say “my child has autism” to people, they would say, “Well what is it? What causes it? I’ve never met anyone with autism before.” Indeed in all of my life up until Patrick was diagnosed, neither had I. Now when I’m out at the mall or in a store, Patrick is not the only person there with autism. I see it. I can pick out the adults and kids who obviously have it; I’m sure there are others I would pick up on if we had a conversation.

If you all are concerned about Social Security going bankrupt by baby boomers, you should be TERRIFIED of what is going to happen when Patrick and all the children behind him grow up and can’t get jobs because schools chose to not educate them. It is the only neurological disease that is not covered by health insurance and we still fight that battle just to try to get our children covered. If they get treatment, many of these children will go on to become taxpaying adults able to hold jobs. If we don’t, they will test the social support system of the government like nobody is ever imagining. The only reason why it is within the realm of psychiatry is because of its psychiatric features. But there are many physical diseases that have psychiatric features.

I am not a fan of Autism Speaks. They are not good stewards of your hard-earned money. Here is a copy of their 2010 tax return. People are generally shocked when they hear me say this because they think Autism Speaks is the gold standard of charities.  Only about 4% of what they get actually helps families. They do not have anyone with autism on their board of directors to help guide them in what people with autism need directly from the people they are supposedly serving. While it is great to use some funds for research for finding the cause, they will never find possible prevention if they are closed off already to some research that does point to vaccines. They lobby in Washington now and they can’t have a cozy relationship with the US Government because the US Government can never admit this. They have to take the party line that vaccines do not cause autism….although there has never been a study that studied the cumulative effect of all these vaccines…and the US Government has been awarding some families who have been harmed by autism under the disguise of encephalopathy which just means damage to the brain. And autism IS damage to the brain. I don’t like some of Autism Speaks advertising either. It offends me.

autspeaks graph

So here are my suggestions for this month:

Wear your blue on April 2, change your light bulbs blue if you want, dye your hair blue if you want. In that moment you can bring awareness.

Then help with action.

Donate to a local group. This way you know your hard-earned money is staying in the community and going directly to help the children because most of the people in these organizations are volunteers. Here are some local groups I can vouch for that will be good stewards of your money:

FEAT-Houston (Families for Effective Autism Treatment): FEAT-Houston is a non-profit organization that provides information and training on treating individuals with autism spectrum disorder using techniques based on applied behavior analysis (ABA). We sponsor workshops, meetings, a newsletter, and regular emails. Our tuition reimbursement and conference stipend programs help support the development of ABA resources in the Greater Houston area and make it possible for more teachers and parents to learn about effective teaching methods for children, teens and adults with autism. We are supported primarily by individual contributions and volunteer efforts.


F.A.C.E.S.: My son was helped by these people. They gave us a grant that allowed Patrick to stay at his school where we reached a point where we might have had to take him out of Including Kids. The Foundation for Autism Care, Education & Services (FACES) is a non-profit 501c3 foundation founded by Larry and Pat Wallace. It is the mission of FACES to raise funds to directly support and promote education, service and Applied Behavior Analysis (ABA) therapy for families faced with Autism Spectrum Disorder. The funding for the foundation comes from both public and private party donations, as well as fundraisers involving private individuals and organizations.


Desperate for Respite: desperate for Respite (dfR) is a non-profit charitable corporation organized exclusively for charitable and community development purposes. Our corporation exists to provide support to caregivers caring for special needs children, dependent adults and their families in the Northwest Houston area, that face the challenges associated of caring for an individual with some level of disability; raising awareness and educating the community by developing relationships and community responsibility for supporting caregivers and their families.


Houston Autism Disability Network: Where Hope Takes Flight! Mission: Information & Resources for Autism Spectrum Disorders & Special Education assistance. Networking meetings for parents & professionals each month, special seminars & annual conference. HADN strives to be a unifying, non-competitive resource for Houston area — in helping to host events and inviting speakers to share their resources & information!


Autism Society of Greater Austin: The Autism Society’s mission is straightforward: “improve the lives of all affected by autism.” In Central Texas, the Autism Society of Greater Austin strives to achieve this goal in several ways: Advocating for the education and training of parents and professionals involved in the educating and caring for persons with autism; helping develop a better understanding of the challenges of persons with autism and their families by serving as a clearinghouse for information about autism; supporting families and professionals through monthly meetings, workshops, on-line vehicles, and printed material; we also sponsor events that are just for fun–come join us! The Autism Society of Greater Austin is a 501(c)3 organization that depends heavily on donations. Please know that contributions are tax deductible and will be used locally.


If money is difficult for you right now, then you can help with your time and talent. If you know a family with a child with autism, offer to babysit for just 2-3 hours. They really need a break. Offer to take the child out with your family on an outing you are doing. Schedule a time to bring lunch over and sit with us for an hour or two and listen to us. We might need to talk about things going on, or perhaps we would prefer to listen to what is going on in your life to keep our minds off of things for awhile. Support legislation that helps autism, which also includes Medicare and Medicaid for those who are adults with autism. Support employers who hire people with autism in their company. There are so many ways you could help in action.

So wear your blue April 2nd and move into action!