Guest Blog: Nothing About Us Without US


Today’s guest blogger is Ivanova Smith, an intern at The Arc of King County, and passionate self-advocate who enjoys speaking out about disabilities. She recently was the keynote speaker at the 8th Annual Living Our Legacy Luncheon, and she regularly shares her insights in The Arc of King County blog. Ivanova has autism, and today she wants to share her opinions about the difference between awareness and acceptance.


In honor of autism acceptance month I wanted to share my thoughts on the difference between autism awareness and autism acceptance. Autism awareness is what has been done in the past. It different from autism acceptance which is what we want this month to stand for.

For a long time autism awareness was control by the influence of a few autism organizations that claimed to be for autism, but they didn’t allow the people with autism to speak. That is a big problem. Organizations that say they want to spread awareness but do not want involvement from the people in the autistic community are not being honest. The people who are directly impacted must be included.

When I was in high school, I had deep depression because I did not know why I was the way I was. When I would see the ads for autism awareness it made me scared of autism. It made me not want to identify with it. It made me feel like a burden, and unwanted by the world. It made me want to hide who I was, triggering me to have very low esteem. It made me self-hate.

The messages from these organizations did not make me feel wanted or appreciated. I watched a documentary video, “Autism Every Day” and it made me feel sick. Parents complained about their autistic children, saying how much of a burden the children are. One parent wanted to drive off a bridge with her autistic child. Because of campaigns like this, the representation and reputation of autistic people has been damaged. It makes us look like unwanted burdens who break our families apart. Autism is presented as a monster that steals a child’s soul. I want to say this clearly. I am autistic, and my soul is still here. Having autism does not mean that I am a monster.

What are these messages teaching to autistic youth? That our lives don’t matter? That we are monsters? I’ll tell you what the message of that video said to me. I am undeserving of love. The parents in the autism ‘awareness’ videos needs to understand that their children hear what they say, and they understand.

The rate of autistics experiencing mental illness such as depression and anxiety is high. I believe this had something to do with it. Many autistic adults probably have low confidence and depression because of these messages we have heard from society, in the media, and in our homes.

I believe that it should be different, and people like me, people with autism, can help change the situation. Organizations that represent autism need to listen to the individuals whom they serve. These organizations need to find out what autistic people want and then advocate for those solutions with us. I only want to be involved with organizations who want to have  people with autism involved as active participants and as leaders.

Do you realize that some of these awareness organizations do not include people with autism in their leadership? How can you lead an organization without including those people at the table to make decisions? It is like a group of men creating a women’s awareness organization – but leaving out the women! The voice of the people represented by the organization must be included. Anyone who really wants to help people with autism must include us. Nothing about us without us, as the old saying goes.

I support organizations that are passionate about showing autism as a natural part of the life, organizations that believe I am not a burden. The Autism Self-Advocacy Network (ASAN) is run by autistics. People First of Washington is a self-advocacy group for people with intellectual and developmental disorders, which includes autism. The Autism Women Network helps spread education about autistic women, and it also led by people with autism. And of course, The Arc helps people with autism get the support they need to live, learn, work, and play in our community. Several other organizations are beginning to realize the importance of self-advocate involvement, but we need to educate every organization about including people with autism.

So I ask – are you part of an organization that spreads autism awareness or autism acceptance? Do you see any people with autism on the board? Do they have autistics speak about issues, or do they depend on non-autistics to speak? If you don’t see anyone with autism involved in the leadership and promotion, then talk to the organization about having our voice be heard. If you see a negative portrayal of people with autism, tell them it upsets you and you want them to stop. If they ask you to wear blue for autism awareness, but they don’t include autistics in their decision making, then wear yellow or red or any other color you want to wear. If they don’t listen to you, and if they don’t value your opinion, then please don’t support organizations like that. If they are talking about us, without us, then we can do without them.

In my book, April is about Autism acceptance and pride. Empower all of the children, youth, and adults with autism to develop their own voice and share their message with the world. Join me in celebrating neurodiversity by embracing the differences that make us unique and wonderful people with passionate souls.


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