The October 2021 meeting of the Interagency Autism Coordinating Committee (IACC) featured some remarkable comments from its autistic members, including Sam Crane, Lindsey Nebeker, and Morénike Giwa Onaiwu—as well as public comments from ASAN’s Julia Bascom and our own editor Shannon Rosa, about the rights and needs of autistic people with intellectual and mental health disabilities. The transcript of the meeting was published only recently, and the entire document is worth your attention.

Even so, we’d like to draw your attention to the comments of Ivanova Smith, an autistic advocate with intellectual disability who is the parent of two small children as well as a a newly seated member of the IACC. Ivanova is passionate about the rights of people with intellectual disabilities (ID) to grow up and participate in their communities—and is a forceful, living example of how people with ID can thrive, given the right supports and understanding. 

We are grateful to Ivan for giving us permission to share their comments here. And we hope you carry the urgency and optimism of their message into the new year.

Ivanova Smith, a Lavtian American person with short brown hair and glasses, out in the community at a restaurant table with two drinks with lemon slices and straws in them.
Ivanova Smith, out in the community.

This is Ivanova Smith. I just want to say I was institutionalized for five and a half years of my life. I was nonspeaking. I did not understand many things. I did not understand even my own name.

It was not until I was started to be taught things and that people really did one-on-one support with me that I started to learn things, and I started to gain abilities in being able to be in my community. It is because people did not think that I could learn.

This idea that people with intellectual disabilities cannot learn is a very dangerous idea and it leads to us being harmed. I think it is important to autistics with intellectual disabilities that we get the support to learn. And we need to get teachers equipped.

We need to help parents teach their children that we grow just like anyone else. We should be given a chance and the dignity of risk to learn how to swim, to learn how to cross the street. If we need support, if we need one-on-one support to cross the street, we should be given that support to cross the street. We shouldn’t be shut away in an institution just because we are struggling to learn something.

I struggled to read, and the school said you will never learn how to read. But my mother, she said no, I will not believe that and my mother sat in the hallway with me every day in the school and taught me to read, to use sign language, to use visuals. She used a different method that the teachers did not use. I learned how to read. It made it so I could have access to academic courses.

But that is not fair [that] people who can’t learn to read to not be given that access, and to be denied that access to have to fight to be able to have access that anybody else wants. It is not right. Just because of an IQ score, we need to stop that and we need to look at people as human beings who want to learn and we need to make sure that everyone has the right to learn and that we all have the right to grow up.

We are not mentally children. Autistics with intellectual disabilities are not mentally children. We grow up just like everyone else, and we need to learn how to be safe and we need to learn what – if we want to have one of these devices, the GPS [tracking] devices, we should be taught informed consent. We should be told about what the device does and what we want it to do and what we do not want it to do.

And if we want to go explore a community, we should just have somebody help us and support us in the community to explore. If I want to go on a walk near a river, but I need support, have somebody go with me and help me explore.

Do not just take away that right for me to explore. That is sad. That does not help an autistic person feel like they are valuable or allowed in their community. We should all be allowed in our community. If we need extra support for that then we should be given it because that is our constitutional right. Thank you.