Autism Walk sign

Autism spectrum disorder is a developmental disability that affects about 1 in 59 U.S. children, according to the Centers for Disease Control and Prevention.

Autism Speaks is an international charity organization that works to promote awareness about autism. After looking at the finances and graphs that Autism Speaks has published, I have an issue. An issue with a lot of charities I have noticed. Why is so little of the money raised by charities actually used for charity work?

According to Charity Navigator, a watchdog website, Autism Speaks spends only 74.6% of its funds on programs and services; 5.7% on administrative services; and 19.6% to raise money. It gets only three out of four stars from Charity Navigator and an 80% overall score.

Autism acceptance should be about autistic people. That’s doesn’t seem to be the focus of Autism Speaks.

According to the Autistic Self Advocacy Network, “Autism Speaks uses its platform and advertising budget to portray autism and autistic people as mysterious and frightening. Their fundraising tactics increase stigma and create barriers to the inclusion of autistic people in our communities.”

As a person with autism, I think I should be allowed to have an opinion about what is good for autistic people. There are a lot of people saying what is good for me and there is no backing or proof for their claims. Autism Speaks does not understand my autism, and I doubt the organization ever will.

Autism Speaks previously sought a cure for autism — as if autism was a serious, debilitating disorder. It is not. There is a lot of variety on the spectrum, and I dislike that people who are not on the spectrum want to decide my rights.

Autism is hard enough. I do not need to be told what is best for me. Awareness-raising walks are great, but what do they accomplish except to make the people walking feel good about themselves? I have never been to such a walk and honestly, I do not want to go to a walk.

Autism Speaks has a message that says to me: People with autism do not have the right to decide for themselves. We do not have the capacity to make those decisions for ourselves. This message is infuriating, and it makes me upset.

According to its website, the Autistic Self Advocacy Network works to “empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us.”

Its motto: “Nothing About Us, Without Us!”

Autism Speaks’ mission, as stated on its website, is less appealing to me: “Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life-span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.”

This quote sounds great but what Autism Speaks does not say is how much money it spends on lobbying rather than on family services.

According to an analysis on the Autistic Self Advocacy Network website, Autism Speaks spends 42% of its budget on awareness and lobbying, and less than 2% on family services.

Less than 2% to help families affected by autism. And, that analysis states, Autism Speaks’ “rates of executive pay are the highest in the autism world: some salaries exceed $500,000 a year.”

This is not acceptable at all, and it needs to be put out there. There are other groups — such as the Autistic Self Advocacy Network — doing good out there.

That organization’s website includes a quote from the late disability rights advocate Ed Roberts: “The greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.”

Autism Speaks doesn’t speak for me.

Nick Hughes, of Lancaster, is the opinion editor at The Snapper, Millersville University’s student newspaper.