In article about Autism Speaks, the rainbow infinity symbol, which stands for the diversity of the autism spectrum

Autism Speaks Does Not Speak for Autistic People

The organization treats autistic people as 'problems' to be fixed instead of actually listening to their voices.

When it comes to donating to charities, there are some people that may want to help the biggest or most prominent one. Autism Speaks is one of those charities. Yes, it seems to be one of the most popular: many celebrities have donated to the cause, people have participated in their annual walks, and even the White House took part in the organization’s annual “Light It Up Blue” campaign.

However, many people who are autistic don’t support the organization. And given the organization’s past antics they have good reason. I used to support it back when I didn’t know about their past, but once I learned more about it, I decided to take my support elsewhere. At one point I even wanted to start an Autism Speaks chapter at my community college, but that was many years ago and I have learned a lot since then and I am still learning more to this day.

In 2009, they made a very disturbing commercial titled “I Am Autism” that says the disability is worse than cancer and AIDS and blames autistic children for their parents divorcing. Basically, the video calls them a burden:

“I am autism … I work faster than pediatric AIDS, cancer and diabetes combined … you have no cure for me … I will plot to rob you of your children and dreams. The truth is, I am still winning, and you are scared.” Sorry Autism Speaks, but I still have my dreams and it didn’t rob me of my childhood.

There was also an older video where a mother describes wanting to drive off a cliff with her autistic daughter in the car; what was even worse is that her daughter was in the room with her. She says she didn’t do it because she had another daughter she wanted to be there for. That mother should probably have had the police at her door for even thinking that thought.

That mother’s interview was just one of many in the full video “Autism Every Day.” This video only shows the bad parts of what autistic kids might go through. They shouldn’t call it “every day” when stuff like this probably doesn’t even happen on a day-to-day basis. I hate the fact that they portray people like me as having meltdowns all the time. They are overwhelmed, maybe something set them off — it is very common for autistic individuals to have sensory overload that could then lead to a meltdown, and even the slightest change in routine could cause one.

There is a huge difference between a regular tantrum and an autistic meltdown and people should really learn that before judging. The comment section in the video is anything but friendly, but it is nice to see that there are people out there that are defending autistic people.

What that video should have shown is all the progress that can be made — all the good moments. Maybe have the kids that are able to talk say something.

As of now there is only one member on the spectrum who is on the board for Autism Speaks. There used to be another but they have since resigned. The fact that there has only been two autistic members on the board really shows that they don’t care about autistic voices. The board should either be all autistic or a majority autistic.

They have also encouraged a 100 Day Kit featuring Julia from “Sesame Street,” the first autistic puppet on the program. I do love Julia, but I just don’t like how they are using her. They make it sound like having a child like Julia or me is like someone either died or got cancer.

Autism Speaks also encourages ABA (applied behavioral analysis) Therapy, which many autistic people condemn. You know that scene in “Frozen” where Elsa has to hide her powers in different ways — “conceal, don’t feel”? Well that is how I feel ABA therapy is like. I am not saying that therapy is a horrible thing, and I can see how some will benefit from it; however, forcing kids to act “less autistic” is not the way to go.

They may have changed the logo, but it doesn’t change the fact that they have not really thought about autistic people. People have not forgotten their past; they are going to have to do a lot more than change their branding for autistic people to consider them a good charity.

Many autistic people were not going for Light It Up Blue for Autism Awareness Month, instead choosing to go “Red Instead.” But what is “Red Instead”? Well, it is a countermovement to help promote autism acceptance that was chosen by autistic people.


The color blue for the Autism Speaks campaign, on the other hand, was chosen by non-autistic people. One reason why many autistic adults may not like Light It Up Blue is because the color is associated with boys, a fact that ignores autistic girls, who are diagnosed at a much lower rate. That’s because we are good at masking; just because we don’t show all the stereotypes doesn’t mean that we don’t have it.

I am often torn sometimes on which color to wear during the month of April because blue is one of my favorite colors and people have told me it goes well with my eyes. So, when I wear blue on a random day I also put on a small hint of red — a bracelet, makeup, socks, etc. — so then I can show that I am supporting the #RedInstead movement.

Autism Speaks is something that should not be supported. Instead I want to encourage all of you to donate to other organizations like ASAN, AWN or other local organizations.

Support those who are autistic. Don’t put more money into CEOs’ pockets. Support more services. Support more opportunities. Whatever charity you decide to support, make sure that it is a good one, one that speaks for autistic people.

Lisa Lilianstrom, Northern Illinois University

Writer Profile

Lisa Lilianstrom

Northern Illinois University
Journalism, minor in Communications

Everyone deserves to have their stories heard. Writer, student, artist — plans to one day travel the world with the love of my life.

Leave a Reply

Your email address will not be published.

Don't Miss