

When most people think of autism, one of the first things that comes to mind is Autism Speaks. So much general knowledge of autism is informed by an organization that spews hate and fear against autistic people. Autism Speaks is notorious within the autistic community for refusing to listen to autistic people, but it’s not a problem limited to this organization (nor is it the only problem with the group. For more info check out this post). Much of the general public assumes that autistic people cannot speak for themselves but this fundamentally wrong and something that needs to be changed.

Often, when autistic self-advocates speak out on issues related to autism, we are met with comments like “But you’re not like my child” or “You’re too high functioning. You couldn’t possibly know what it’s like for real people with autism.” We are invalidated and ignored, in large part thanks to the efforts of Autism Speaks. Autistic people who can speak are typically viewed by the general public as entirely different from “low functioning” autistic people and it is assumed that we could not possibly understand what it’s like for those who have a different set of traits than ourselves. This line of thinking, however, is very problematic.

While I may never fully understand the experience of being a non-speaking autistic, I certainly have a lot more in common with them, and a greater ability to understand them, than an allistic person. I may not be nonverbal all the time, but I do experience periods of being nonverbal and thus understand to an extent the difficulties of not being able to easily communicate needs with those around me. While I may seem “high functioning” to most people, I too have meltdowns in which I become self-injurious. While I can suppress if for a time, I too need to flap my hands and stim in other ways. While not always obvious, I too have sensory issues that affect my day to day functioning. While all autistic people are different and have a different collection of autistic traits to varying degrees, autistic people have much more in common with each other and a greater ability to understand each other than allistics do.

Whether you’re the parent, sibling, cousin, neighbor, friend, or in any other way related to an autistic person, if you are allistic, you can’t understand the autistic experience as well as an autistic person. That is why it is so important to listen to autistic people. Yes, even the “high functioning” ones. We may not be exactly like you child/sibling/cousin/neighbor/friend but we will often have insight into why our autistic siblings act the way they do. Though we all have different mixes of traits, we have enough in common to be able to provide insight and understanding.

Further, when it comes to issues that affect the autistic community, autistic people’s voices need to be front and center. Whether it’s regarding research into autism, policies that affect autistic people, or anything else, autistic people should be consulted. This is one of the major issues with Autism Speaks. Not only do they not consult autistic people on how best to help us, but they actively ignore autistic advocates who try to speak out. Autistic people, like all disabled people, should be the authorities on our experiences. So much research into autism assumes that things are done for no reason or are great mysteries when, if they were to ask autistic people, we could easily provide answers for why we do the things we do.

Autistic people are the foremost experts on the autistic experience and it’s time that we are listened to. Whether we are perceived as high functioning or low functioning, no matter what mix of traits we have, we know more about our experiences than allistic people. There are so many autistic people speaking up about issues pertaining to autism and the autistic experience, we just need people to start listening. An organization that doesn’t listen to us and actively demonizes us should not be the source where most people get their information. To learn about autism, people should be turning to autistic people. Autistics are speaking; it’s time to listen.