This is a rallying cry for many Autistic individuals currently. “Nothing About Us, Without Us” means if it is for people who are Autistic, it should not be designed without them involved. This is coming up in my life a lot lately and I’ve found a problem. It’s great that we are being involved but it’s pointless if no one is listening or respecting our voices.
I was in a few meetings this week regarding Autism in the workplace and accommodations. In every meeting, every participant was aware that I am Autistic and that I was one of many voices striving to be heard. I was vocal about my feedback and my concerns, as well as my praise and support. However, I left each meeting feeling alone, unheard, and unimportant. The intent of inviting those who are Autistic to work in developing program for Autism was not to make those attendees the “token” Autistic in the room. This has happened to many groups that have suffered marginalization. The last thing I wanted was to be the Autism mascot. I wanted to be a valued participant, sharing my experiences and knowledge, and making a difference. These meetings, however, leave me drained, frustrated, isolated, and saddened. They sometimes even make me question why I bother to do this work. Then, I remember the purpose. THIS is why I do what I do.
I speak out, I reach out, I fight because this needs to stop. Designing a program that is for Autistic individuals that does not involve anyone who is Autistic and able to speak to their experiences and be heard is like designing a pair of prescription glasses without the person’s prescription. You are guessing, based on averages, on anecdotal information found in other prescriptions or on the web, and you might get close. However, you are more likely to make it even harder for the person to see clearly.
In the case of developing supports for adult Autistic people, you are likely going to make a challenging situation even more difficult by increasing negativity towards Autism, spreading myths further that, although disproved are still pervasive, and make it more likely the person will fail. You are doing damage and harm through such programs and it would be better for you to have done nothing than to have implemented them.
We struggle enough due to the responses of people who do not understand Autism and do not need this made worse. By involving and listening to those who are Autistic, you are increasing the likelihood of success for both you and the individuals you are trying to help. By ignoring our voices, our experiences, and our concerns, you are simply doing what the world already does. You are further isolating us, sending us the message that our thoughts and experiences do not matter, and showing everyone that we are not even capable of speaking on our own experiences.