Houston, we have a problem

We, as self-advocates, have a problem in our community.

We have gone so far in the direction of fighting to have our voices heard, that we have decided that it is ok to silence the voices of those who want to be our ally. While a lot of groups claiming to be allies have done - and continue to do - real harm, we also are not recognizing the systemic issues that have brought these groups into power, and how they maintain power. Autism Speaks, for example, has money and media influence that make sure they continue to be a dominant voice despite so much broad knowledge. We talk about parents not always valuing our voices, but I would reckon most parents simply do not know how to access our voices - the Autistic Self Advocacy Network does a fantastic job as a beacon of our voices, but only can do so much as a group that does not have the benefits of extreme wealth and connection other groups do not. If I search autism on the internet, even with Google tracking my search habits and my Google Scholar habits that both focus on self-advocacy, the first three links I see are Wikipedia, Autism Speaks, and the CDC. If I was a potential ally - whether a parent with a recently-diagnosed child, someone interested in the subject as an educator, or someone who had autism presented to me for the first time at my job - I would make the assumption that the resources presented were accurate and thorough. Making our voices and stories appealing to those who have been misinformed by these power structures is important - most people simply do not know where to start.

We also, in my opinion, are leaving out something important when we dismiss the voices of our potential allies - the fact that we are turning those who have such influence over the lives of the next generation of self-advocates against our message. I think all of us can safely say that our parents have been the biggest influences in how we've developed - for better or worse, depending on your own situation. But we've also been influenced by our teachers, doctors, and all those around us as we grow, and many of them were our advocates before we could advocate for ourselves. Their voices and experiences matter too - even if we should value the experiences and perspectives of people with autism more than people who do not have autism in terms of things that affect us. Parents are also often the advocates for those who can't advocate for themselves - remember, autism is a spectrum, and people who cannot communicate are a part of our autistic community as much as you or I am. Parents, like us, also face discrimination - I've heard anecdotal evidence of judgement of parents of non-autistic kids judging the parents of autistic kids for not forcing their children to mask/behave differently than their own kid, and research has shown that stigma affects the willingness of parents to engage in community experiences that other families may take for granted - going to the park, to the museum, even just to the store. Reading the experiences in these papers, I've recognized some of my own experience in their stories - judgement for doing even simple things that help me feel better, like wearing noise-cancelling headphones or gently stimming.


Many professions that engage with people with autism are also hampered by this. I've had several experiences working on my PhD of authors - generally those who have been in the field of Special Education for a long time and are considered to be highly influential - who have refused to recognized the disabled voice at all. This isn't even to start talking about areas such as medicine, which inherently is going to lean closer to the medical model of disability, or to the many other areas that affect us. When the basic textbook is teaching the wrong information, it's hard to counteract that. When that textbook has been used for 25+ years, that's 25+ years of students who have had that wrong information. That's almost the entirety of some people's careers. It's no wonder that many of the basic systems we as humans rely on have failed us autistic people when they were meant to help us - our voice isn't present from the start, and it's hard to counteract that.


Does this make the ignorance and trauma that this information can cause any less horrific? No. Does this mean we need to sit down with willfully damaging groups and let them share their perspectives? No. Does this mean that we should sit back and let these allies fight our battles for us, and assume they'll do so with the best of intentions once we make our voices heard to them? Absolutely not.


What this means, is that we need to focus our efforts where they count. Change is slow, but look at how far we've come today. 30 years ago, so many of us who have autism wouldn't have been diagnosed properly or would have been laughed out of every doctor's office we went to. While it's still a reality that our autism is often ignored by medical professionals, think about how many of us are now getting diagnoses or recognizing that we have autism, and how far we've come in recognizing the needs of other intersectional identities within autism as a society - autistic women, autistic people of color, autistic LGBTQ+ folks, etc. It has been slow - after all, we've had to change an entire system, and we're nowhere near done.


Now comes the real call to action. We can make change here and now for us and ours, but we also need to recognize the importance of making change for the next generation of autistic self-advocates, autistic leaders, and autistic people of all stripes. We need to make our voices accessible. Keep up our speaking, our presenting, but also find new ways to get out there. If you have the connections, and know someone who can get on the local news for a feel-good segment (maybe about a program that you know that really helps autistic folks in your area!) do it. If you have the opportunity to work with a group that is local to you that does positive work for and with people with autism, do it. Be a mentor to someone younger, and help them become a self-advocate and share their own voice. Help get parents to understand the importance of self-advocacy skills, and help them learn how they can help their kids be self-advocates, however you can. Speak to power - if you see something wrong, and know about it, talk about it, help it be better. Talk to the writer of a textbook, or a local university that has any disability-related programming, and see if you can do something to help make the autistic voice the center of teaching about autism. Bring together allies, and listen to them, but remember to make your voice heard - if you don't say it, don't expect anyone else to either.


We need to be the change we want to be. We can't do it alone, however - there's only so many of us, and the more people on our team, the better we can make the world. We're in this together - not just us autistic people, but everyone around us.