As The Mom Of A Child With Autism, I Don't Support Autism Speaks

Before You ‘Light It Up Blue’ for Autism Awareness, Here’s What You Should Know

March 30, 2021 Updated March 31, 2021

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Scary Mommy and Andrew H. Walker/Getty

April 2 is World Autism Awareness Day. It was designated by the UN in 2007, and it is widely publicized by Autism Speaks, a large non-profit which touts itself as an autism advocacy group. Their “Light It Up Blue” campaign for the month of April is widely known, inspiring people to add blue frames to their social media profile photos, speak out about their love for the autistic people in their lives, and donate money to Autism Speaks.

All of that sounds positive and wonderful, and some of it is. Autistic individuals deserve love, and advocacy groups can use financial support to provide services to the autistic community.

The problem is that Autism Speaks isn’t the universally beloved organization you might assume it is. If you speak to a great number of autistic individuals, the sentiment they share is, “Autism Speaks doesn’t speak for me.”

If you support Autism Speaks and participate in their “Light It Up Blue” campaign, I am not here to condemn or judge you.

Before my son was diagnosed, Autism Speaks is the only autism organization I had ever heard of. I thought their blue and their puzzle pieces were universally accepted as the preferred symbols for autism.

I’ve since learned that isn’t the case.

It would take a long time to outline the many reasons that a lot of autistic people do not align themselves with Autism Speaks. The list of alleged issues with the organization is long. They have undergone a rebranding effort, and by some accounts, progress is being made, but they have a long history of practices that many autistic individuals do not support. As an organization, they have often painted autism as tragic, mysterious and unfortunate, and have centered the experiences of “autism parents” over the voices of actually autistic people, among many other things.

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I’m not here to tell you that you shouldn’t support Autism Speaks; I’m here to inform you that a LOT of actually autistic people don’t support them. Some go as far as to call them a hate group. You can draw your own conclusions about what that should mean for you.

Since I am not autistic, I am choosing not to speak for the autistic community.

Rather than explaining in my own words, I am encouraging you to use some of your precious time to seek out this information on your own and read the many, many accounts available from autistic people. To get you started, here are a few direct quotes from autistic adults who have written their opinions about Autism Speaks.

In an article posted on the Autistic Women and Nonbinary Network’s website, writer Amy Sequenzia says, “Autisms [sic] Speaks reaches out to families by listing the deficits, difficulties and ‘pain’ an Autistic child will experience ‘forever’; Autism Speaks makes videos that paints autism as the cause of all the troubles in the world; Autism Speaks has no problem in allowing a board member to advertise her macabre wish to murder her Autistic daughter.”

On her blog, In The Loop About Neurodiversity, writer Cassandra Crosman explains, “Autistic people also do not like the color blue that Autism Speaks has used, due to the false gender stereotype of autism being ‘more common in boys’ that Autism Speaks still promotes in its 100 Day Kit, making it harder for women and others with diverse gender identities including transgender individuals, gender nonconforming people, and nonbinary people to receive an autism diagnosis. April has ever since become a tough month for the autistic community in which they have to fight misconceptions about autism, urge others to stop raising money for Autism Speaks, and have to constantly hear about an organization that has treated them poorly and is claiming to represent them.”

In an opinion piece for The Student Life, the newspaper of Claremont Colleges, writer Donnie Denome declares, “It’s not that I want Autism Speaks to get with the program. It’s that I don’t trust Autism Speaks, or organizations like them that treat disabled people like suffering burdens on our family members, to change in any meaningful way or to value neurodiversity without distorting the concept beyond all recognition. I have no time or energy for groups that view me as a parasite or infected appendage on the body of my neurotypical loved ones.”

This is important to me because of my son, Walker.

Walker is five and he’s had an ASD diagnosis since just before he was three. But he’s been autistic since he was a flickering heartbeat on a grainy eight-week ultrasound—the moment I fell in love with him.

When he was diagnosed, the developmental pediatrician that guided us through that process warned us about Autism Speaks. He said that their focus on “a cure” makes autism seem like a terrifying disease instead of a neurological difference. He suggested other places where we could seek out information about autism, and encouraged us to think about our child as different so we could accommodate him differently, but never, ever to think of him as damaged, broken or in need of fixing.

I am so grateful for that. Because of him, I chose instead to seek out autistic adults and listen to their advice. Our son has been free to be himself. We have chosen to limit his therapies to things that support interests he already has, like speech. We have understood from minute one that appearing neurotypical is not a goal he has, so it’s not a goal we will set for him.

My oldest son explains it to people like this: “Our family is mostly made of computers, but Walker is an iPad. We are all really smart, and we can still communicate with each other even though we do different stuff. We are way different, but also way the same.”

Brighton Lim/EyeEm/Getty

Because we love our boy and want to support all the other “iPads” out there, we want to acknowledge World Autism Awareness Day without furthering support for Autism Speaks.

There are other options!

Some people choose to follow the Red Instead movement. According to Learnfromautistics.com, “Blue is typically understood to be a symbol of loss, grief, and despair. Not surprisingly, many autistics prefer to be associated with a color that symbolizes fire, passion, and heart.” The #RedInstead movement seeks to spread a message of acceptance rather than awareness. The world knows about autism; it’s time to start teaching the world how to accommodate, rather than seek to cure, autistic people.

Another option is to “Light It Up Gold.” AutisticUK.org explains, “The Au suffix has become quite common in its use as it uses the Autis(tic)(m) = Au* = Gold idea to self-identify and as a community had started #LIUG, Light it up Gold, in response to Auti$m $peak$ (A$). This was not the only use of Gold or Au we found, but it was the most common and seemed to have struck a loud chord in many groups and individuals in other countries as well as the UK.”

We love this one in our house. Every year on April 2, I post the following: “Au is the chemical symbol for gold. Gold is valuable, and so is Walker! He’s AUtistic and AUsome! We don’t feel BLUE about Walker’s autism! We are lucky to have our PRECIOUS boy sparkling and shining just exactly as he is! We are lighting it up GOLD for Autism Acceptance Day!”

If you want to show your love and support for the autistic folks in your life on April 2, you can choose to wear red, light it up gold, or just give them a shout-out.

But before you “Light It Up Blue,” you should know that for some people, that won’t feel like support, no matter what pretty packaging Autism Speaks tries to put on their organization to distract from their history.

For more information about autism and how to support autistic individuals in your life, please visit https://autisticadvocacy.org/ and https://awnnetwork.org/.