In January I began my Master of Social Work degree program. I am hoping that working hard as a scholar, earning honours in my courses, getting selected for a PhD program, and earning a doctorate in social work focusing on professional practice with fellow autistic people will get my ideas about the future of autism services into public policy. Namely, I want the future of autism services to promote our housing, alleviate autistic poverty, stop the autistic suicide rate and get us the mental health supports we need for autistic depression and anxiety. I want autism services to stop researching a “cure” to exterminate what makes us the beautiful people that we are, and instead research ways to make an autistic life more fulfilling and joyful.
My thinking is that as a plebeian without credentials, people in positions of power can choose not to listen to me at any time, and instead wield their power to determine what my future as an autistic person will be, but if I have a doctorate, they will have to listen to me.
The truth is that they do not need to listen to me, no matter what academic honours I earn. If a politician is having their campaign funded from donations by autism lobby groups like the Canadian Autism Spectrum Disorder Alliance (CASDA) or Autism Speaks, they will be more beholden to listen to the words of the organization that gave them their power, rather than a person with a “doctor” prefix in their name on whom none of their power rests. Autism organizations, rather than uplift a person who is critical of their trajectory, would rather uplift a person who is praising the work that they do, especially in front of funders. Even if I obtain a PhD, I suspect that I will have no more foot in the door to change the trajectory of autism services than I currently do.
Even if I do get selected to manage projects for these autism organizations, who will be changed more? Will the organization be changed by my pushing, or will I stay silent in the face of their pathologizing of who I am in order to keep my job and financially support myself? Will the organization change me more than I change it?
And who is to say that my ideas of the future of autism services are the correct ideas? Does the autism world need another white man with a university degree coming in and making changes that he believes will make autistic lives better? Is that not how every fault of the current system began? With a white martyr believing that the sacrifices they had made to get their position of power justified that power that they held over the lives of other people?
Altogether, this is not my ideal future. I want the services to change, but I alone cannot be the one on whom it is the responsibility to change them; not if the changes are to actually be impactful and what our community needs.
What we need is to give every autistic person the power to determine their own best future. And the tools to make their own vision of their best future a reality.
There are 116 million autistic people on planet Earth, if the often-cited 1 in 66 ratio is accurate. Every time that one autistic self-advocate has been uplifted as having the answers about autistic life, it has silenced millions of our voices. This is why every autistic self-advocate who is trying to make the world a better place is made to say, “I am not the voice of autism, I am just one autistic voice”. But that is how the wave of change will start. A few of us will communicate our truth, and that will inspire a few more of us to communicate our truth, which turns into thousands of voices, then hundreds of thousands, and millions of us finding our voice.
Because not every autistic speaks verbally, or is apt at verbalizing what we really want to say, we find our most comfortable way of communicating. We may not be public speaking self-advocates, but we may write essays, or make TikTok videos, or create art, or our self-advocacy may just be hitting and screaming “NO!” or crying when we are made to do something traumatizing to our senses.
Maybe creating a video or writing an essay or getting in front of an audience and talking about our autistic experiences is too much labour; too much to manage. Self-advocacy is something we practice every day. We practice it when we refuse to play at recess with the kids who bully us and instead stay indoors and read a book in a bathroom stall. We practice it when we scream at our ABA therapist and bite their hand. We practice self-advocacy when we eat something that we were told is unhealthy for us, but it gives us comfort. These are not isolated actions; they create waves. When one autistic person sees another person staying indoors at recess to get away from their bullies, they might say “they’re breaking the rules staying indoors”, or they might start a recess book club together, which becomes an impromptu neurodiversity or disability rights club at school. Taking control of what we eat might initially cause us guilt, and over time it might give ourselves more permission to take more control of other aspects of our body; what we wear, how we stimulate ourselves, and who we allow to touch our bodies, and again that may inspire other people, not just other autistic people, to claim such sovereignty over their own bodies. Enough autistic kids biting their ABA therapist might make them quit their job and go work in a bookstore. Actions accumulate, not just just within our own lives, but accumulate in the lives of everybody around us.
You may have heard of the Butterfly Effect; how weather patterns, and even the course of history, changes with the flap of a butterfly’s wings. It means that tiny and thoughtless actions create waves that change the world. This is often a story element in time travel adventures; Homer Simpson travels back to prehistoric times, swats a mosquito, and returns to the present day where the entire world is a 1984 dystopia ruled by Ned Flanders.
This is the real power that humans have. We might become the President of the United States and think that the changes we are enacting are changing the world and originated within us, but in reality a person becomes the President of the United States through the decisions of millions of people to leave their house and cast a vote for them on election day, and millions of tiny actions influenced each person’s decision to leave their house and cast a vote for the President, and countless tiny actions throughout the course of human history influenced the nation’s current realities that the President must address. The story of the world is never one person’s pen writing history. Each of us makes dozens of decisions each day, which will echo throughout the future; our own future and the future of the planet, in ways that are incomprehensible to us.
Each of us has this power, whether we are aware of it or not. Each of us is creating ripples that will change the world even if we do not believe that we are.
This must be the goal of autistic self-advocacy; to awake autistic people to the ripples that each of us is creating. Teaching autistic people that we do not need to hold the reins of power; to be the CEO of an autism charity, or be a member of our country’s legislative body, or be an autism researcher, in order to create the changes in how the world perceives autism that they want to see. Autistic self-advocacy must be about awaking the potential for other autistic people to reclaim their power. Whether that’s a decision to flap or have quiet hands, a decision to eat our safe food or eat something that makes our autistic body feel sick, to stay silent when a person in authority over our life tells us to do something, or to scream and bite.
The power of a jumbo jet to change weather patterns is not more powerful than 116 million butterflies flapping their wings. The power of an autism charity is not more powerful than 116 million autistics flapping our hands.