Nothing About Us, Without Us: Playing a Part in the Neurodiversity Revolution
Posted on 03/30/21 in Advocacy by Nera Birch
Being proud to be autistic is a relatively new concept for me. I was taught all my life that my autism was something I needed to hide, to be ashamed of. I was forced to mask my autism by my parents, teachers, and doctors. Only recently have I been able to take off the mask. Now that it is off, I am ready to start speaking about my autistic experience.
I very much respect the professionals and parents that support autistics day in and day out. I’m sure it can be exhausting, especially for parents. However, unless you are autistic, you don’t know what it feels like to be autistic. Autism is a neurological disorder and because of that, it affects every inch of our lives, including the way we experience every sense and the way we interact with the world around us. We don’t even get a break while sleeping. Most autistics consider it a good night’s sleep if they reach 4 or 5 hours. It can be incredibly difficult to just live a simple day. I have at least one panic attack a day, because it is so overwhelming to have constant stimuli that you can’t process thrown at you from every angle.
There is a great quote in the disability community: Nothing about us, without us. The autistic community doesn’t always have a voice and it’s not just because some of us are non-verbal. While there are many respectful, trustworthy autism professionals out there who believe in patient or client-led care and are doing wonderful work, the sad truth is that there are also people who choose not to listen to us. They think they know what is best for us. I’ve had conversations with doctors who, once they find out I have autism, will start addressing the person next to me, as if I am unable to comprehend the situation, now that they know I have autism. It can be very frustrating to be treated as though you have no intelligence.
The time to change the perception of what it means to have autism is now. We are at the forefront of the neurodiversity revolution. People with autism are making themselves heard. We are showing society that our neurodiversity is a positive, not a negative. Personally, I use my self-advocacy to train neurotypical community members, such as first responders, about how to approach and treat autistics. I also helped create a Discord community solely for people on the spectrum. The group is a safe place to ask for advice, share your special interests, and post a lot of really cute animal pictures. Above all, it is a space to make and connect with friends, which is not something we get many places.
Milestones Autism Resources has been doing an amazing job letting self-advocates lead the way. I started speaking at the Milestones Conference in high school and have stuck by this organization ever since. They know that autistics are the best experts about autism and they really practice what they preach, providing a model of what it looks like to give individuals with autism a platform to share their experiences with others in the autism community. This year, both the keynotes at the conference are women on the spectrum. Autism conferences, agencies and advocacy groups should all work to feature, integrate and consult the people they are trying to help.
This is the kind of change we need to see in the world. Once again, nothing about us, without us.
ABOUT THE WRITER
Nera Birch is a self-advocate with a passion for bringing awareness and advocacy to the Cleveland area. She comes to Milestones as a former volunteer and speaker, with a long history of public speaking alongside the Milestones coaching team about topics important to the autism community.