It’s April, which means it’s Autism Acceptance Month (a fact I was oblivious to until 2021). I have a hard enough time understanding the purpose of conventional holidays, but the idea of marking a month, or a day, or a week, as the time to pay attention to a specific cause, has never resonated with me. This is my first April since being diagnosed Autistic last year, and I get the sense from social media that I’m not alone in my ambivalence. At work (at a large corporation), over the past few years I have become heavily involved with diversity, equity, and inclusion work, and I noticed from the start that a lot of that work revolves around different months that are labeled to honor, celebrate, appreciate, or learn about a marginalized group. Pride month, Black History Month, Women’s History Month, World Mental Health Day, and so forth. The idea of labeling months like this has always felt artificial and arbitrary to me, and I’ve never paid too much attention.
But, as a cisgendered white man, I now recognize that we need to be intentional about honoring marginalized groups because as a society we don’t do it on a daily basis. I didn’t think deeply about this for most of my life because I didn’t have to - people who looked like me were on TV every day, in the newspaper every morning, in all the books I read, and all the positions of power that I interacted with. Since I’ve become more aware of my privilege, and more conscientious in learning about the experiences and perspectives of marginalized people, I have come to better understand why we need to devote specific efforts like this. That said, now that I openly identify as a late diagnosed Autistic person, I find myself flinching and cringing at a lot of the efforts I see happening during April.
When I first started exploring the Autistic community I was very happy to find so many amazing people sharing so much information to help me educate myself, make sense out of my diagnosis, reflect back on my life experiences, and learn about the challenges that others have faced. I think it is important that this information and these perspectives be available for people new to the Autistic community. I have a great respect and appreciation for people like Nick Walker who have created references that explain some of the terminology, and they’ve been very helpful to me.
The part that I find a bit uncomfortable is the polarization that I see and the “right way” vs “wrong way” mindset that I find is prevalent. This, for example, is how Nick introduces her incredibly helpful content on twitter:
I agree that people from non-marginalized groups should take time (and significant effort) to educate themselves and not put the burden of educating them onto members of the marginalized group. At the same time, I think that learning about the nuances of terminology and language of any marginalized group is a complicated endeavor that takes time and will inevitably involve a lot of mistakes along the way. (Again, I admire and respect Nick and have a great respect for her work). Knowing who to listen to, what organizations to trust, how to vet the people and organizations providing information, are just a few of the challenges people will encounter as they self educate. I feel we need to make room for people to make mistakes because that’s how we learn. Making someone feel dumb for asking a question or making a mistake ultimately won’t help anybody - it will probably lead to more polarization and division, which I think hurts us all.
That said, I do think it is important to articulate the preferences of the Autistic community and not to take the view that I’ve seen some people promote, which is to dismiss the differences between the medical model and the social model as distractions that only cause divisions. There are real, fundamental philosophical differences in deficit based thinking vs. asset based thinking, and I feel it is totally appropriate to encourage more people to adopt asset based thinking for the benefit of society as a whole (again this is not just about Autistic issues, I think this is true of a wide variety of political, social, and institutional thinking prevalent in Western society). I just think we can be a bit nicer about it.
On the other end of the spectrum (so to speak), it’s hard to see non-Autistic people saying things they might think are supportive but are actually further marginalizing. People on Linkedin posting proudly about how their company has an autism hiring program, for example - not realizing that such programs can isolate, label, and force disclosure of Autistic people. Or seeing parents of Autistic kids posting intimate things about their children, or speaking for their children, without regard to the child’s privacy or preferences. Or, perhaps the most common thing I’ve seen, people posting about the achievements of Autistic people with surprise - illustrating the prevalence of deficit thinking, where people have such low expectations that they feel the need to celebrate minor accomplishments as if they are miracles.
As much as seeing these things makes me cringe, I don’t think it’s helpful to respond with scorn, the way many people do. I do see some Autistic advocates posting replies that seek to educate rather than insult or marginalize the poster, which I admire. I think about doing that, but ultimately I don’t have the courage because I’m afraid that it will only start an argument rather than a productive dialog. And perhaps that is at the root of the problem - people who want to reach out and help people understand each other are afraid to speak up for fear of getting stomped on, and so the majority of public dialog is done by people on the polarized edges. It’s probably more nuanced than that, but it feels exhausting to be constantly feeling and seeing other people feel angry, insulted, hurt, or even threatened by the differing opinions of others.
33: Marking months
I hear you. And I think this is part of why I slowed down writing so much about autism. As usual, I found it hard to arrive at a position and I don't want to accidentally be aligned with unhelpful or damaging thinking on the topic. I still find it hard to even decide whether I actually find saying 'with autism' is problematic or if I am just following other autistic advocates. Someone pointed out that if we don't call it a disability then the already low funds could be cut even further, and that's why those in the field of autism but without being autistic tend to take the person-centred approach.
Thanks for writing this, I felt understood and validated reading it.
I started a post about autism acceptance week but hedged so many bets while writing it I think I bored myself. 😬😅