For Autism Pride Month, we at Slick Chicks wanted to give the spotlight to Allie Sayre, a beloved ambassador of ours. Below is Allie’s personal take on topics such as accurate representation, the importance of relationships, and the long needed switch from “Autism Awareness Month” to Autism Pride Month:
What do you think are the biggest stigmas/mis-informers of autism in society?
I think the media has a lot to do with this; but maybe that’s only on my mind because of recent events around absolutely terrible examples of autistic representation in the media, though it’s obviously not new.
I think most people on the street imagine what it means to be autistic in two ways; these are basically the only two representations of autism in mass media (films, tv, etc). First, people think of the autistic savant, who is incredibly talented at one particular thing, but otherwise “lack social skills” or “lack life skills”. I think this paints the picture that autistic savants are more deserving of their humanity because they have something that they can “do”. It’s the idea of a “tragic genius” who “struggles with autism”, despite the fact that most autistic people I know of, myself included, who have discussed this feel that the only thing they struggle with is stigma and a lack of understanding, resources, and care more generally.
Also worth noting, savantism is present in something like 1% of autistic people.
The second way of being autistic people think of is the sort of “pitiable” non-speaking autistic who is completely dependent on a parent or a caretaker. People thinking of this view what it means to be autistic tend to be extremely condescending toward autistic people, because in essence, they tend to think of autistic people as if they are suffering inherently as a result of being autistic, rather than from living in world where people are condescending, neglectful, and cruel to autistic people, at least in part because of this exact way of viewing autistic people.
How significant is accurate representation for the autistic community? Are there specific parts of society you believe could significantly improve in this area?
I absolutely can’t speak for anyone besides myself, and I definitely can’t speak for the whole community, but i can definitely say what I think, and what I’ve heard.
In terms of what I think, It’s sort of complicated. I don’t think good representation is the most important thing but i think it’s still really important. As far as I’ve seen, almost every mainstream representation of autism has been between bad and really bad. So, if nothing else, it’s really important to counter this bad representation with critiques from autistic voices, boycotts, and also, good autistic representation. I don’t think we can just let bad representation go unquestioned...if there was absolutely no representation, that would be an entirely different story, since a blank slate in people's minds could mean that self-advocates might be able control the conversations around autistic people. But that’s not the case, and I think a lot of self advocates are fighting an uphill battle against learned stereotypes and tropes of autistic people.
How has being autistic affected your life experiences?
I think it’s really inseparable, in the best way. It’s hard for me to figure out what part of me is “just autism” and what part of me is “just me”. But I don’t think it works like that, and I’m pretty sure I’ll never really know. Obviously, like most advocates, I don’t believe that there should ever be a “cure for autism” since the main problems autistic people face are social.
Of course, there are many traits I have that I know that other autistic people have as well. But sometimes even those similarities are expressed differently. Overcatagoriziation makes it easier for people who do harm to autistic people to pit autistic people against each other, and this is one of the many reasons that labels like “low-functioning” and “high-functioning” are problematic and shouldn’t be used. If the autistic people can be divided this way (they can’t) then there’s always going to be a privilege of “High-functioning autistics” due to the proximity to neurotypicality. Being able to say “I’m not like those, low-functioning autistics” undermines solidarity. This is especially true since no one is “high-functioning” or “low functioning” at any given time and because autistic people are taught to mask from such a young age that sometimes what is seen is “high functioning” is actually just masking.
I know this is deeply and sometimes painfully true for me; No one ever really told me that I had to mask, which is a position of privilege, but I often say that for me, getting to know someone is at least partially a matter of getting to be able to unmask; to allow myself to be “low functioning”. But this is a really joyful experience because it’s one of getting to be more and more my true self with someone. To some degree, this is part of all relationships; getting to know someone involves building trust and sort of coming into oneself.
Autistic adults seem to get so little support from neurotypical society, that sometimes advocacy is about survival. Whenever I give talks to educators about their autistic students, I really try to emphasize the idea that they should always be supportive and always try to let their students take the lead. Being an autistic adult in a neurotypical world is sometimes very difficult, and educators of young children have the possibility of helping kids develop strategies that make it easier - strategies that they can take with them and use for the rest of their lives. School can be a very supportive place, even if it often isn’t, but the whole point of it - at least to some degree - is preparing kids for the adult world. Making school difficult, hard, and dehumanizing might make it more like the adult world, but it definitely doesn’t help anyone navigate that world.
How has finding out that you were autistic impacted your mental health? Relationships?
With regard to my relationships, I think it’s been really beneficial. For one thing, it’s given me language to describe things about myself and things about what i’m feeling, or going through, or just broadly how my brain works. This definitely makes communication more clear, which I think can make relationships better.
Having this language has affected the whole lifecycle of relationships. I’ve always been pretty deeply in touch with myself, what I want, and just generally who I am...knowing that I’m autistic has meant I can fold this into conversations and call back to ways that other advocates have described similar experiences to mine when I’m sort of introducing myself (like getting to know) someone. I find this useful regardless of the kind of relationship, because I think the initial “getting to know someone” phase is similar.
It’s also given me language that I can use to find community, which has been super important. Beyond the autistic community, there’s the more broad neurodivergence community, the developmental disability community….there’s the disability justice movement and related movements. It’s such a treasure trove for me, and it’s produced a lot of great friendships.
What is something you wish people stopped asking you about autism and/or being autistic?
There are so many good listicials from advocates regarding “things not to say to autistic people", and I’ll get to a few of my favorites, but first I want to say that I’m of two minds about this. Obviously, I get a fair amount of questions that range from cringey to actually quite invasive and that’s not fun. But if they’re in good faith, not completely inappropriate, and I'm in a place where I can handle it, I’ll generally try to address them or point the person inquiring to some resources. There is so much misinformation around autism and a lot of it masquerades as being inclusive or “kind”, so I think that just letting people fend for themselves can lead to them learning harmful information as fact. This isn’t the fault of the people trying to learn, of course, but that of the organizations that are trying to profit off of autistic people and push their own agenda (for example funding research for bogus “cures'' and cruel forms of “treatment” that often leave autistic people permanently traumatized). So, as annoying as some of these conversations are, I think it’s often better than the alternative. That said, I also recognize that this isn’t very choiceful if I feel like I have to explain it. That said, here are my least favorite things to hear when I talk about autism/being autistic:
- “You don’t look like you have autism”
- “You have autism? I’m so sorry”
- “My brother/sister/childhood friend/whatever was autistic and then they fixed them”
Most of these have a few things in common. For one, they all use person-first language, rather than the identity-first language more common within the autistic community (https://autisticadvocacy.org/about-asan/identity-first-language/).They also implicitly make a few assumptions about autistic people, namely that they are pitiable and that the being autistic is inherently a problem to be fixed, which is not the experience of most actually autistic people, who view many if not all of the difficulties they encounter being the result of a world that views difference as inherently bad and wrong. Again, the fact that the world is like that comes at least in part because of this exact view of autistic people.
What do you believe has been the biggest impact of the shift from “Autism Awareness Month” to “Autism Acceptance Month”, and eventually “Autism Pride”? Do you believe this change was needed?
This evolution shows that the work of advocates is succeeding, slowly but surely. Autism Awareness, though not specifically started by Autism Speaks (an organization disliked by almost all advocates, and certainly by an advocate with any degree of radicality), it has definitely been most widely promoted by them. Again, I can’t speak for all autistic people, and quite frankly, I can’t speak for any autistic people other than myself, but Autism Awareness month strikes me as sort of condescending. Autism Acceptance I think is slightly better inasmuch as it focuses on the fact that the central issue autistic people face is a hostile world. But I still think that “acceptance” as a way of framing it as some abnormal thing that non-autistics have to begrudgingly “accept”. “Autism Pride'' and “Autism Liberation'' on the other hand put the focus on autistic people and our struggle against the hostile world. I think we’re maybe a little ways off from widespread acceptance of the Pride/Liberation paradigm, especially since a lot of well meaning people and orgs are still talking about “Autism Awareness''. Obviously, not everyone is gonna be on the same page but the Pride/Liberation paradigm is where we need to be because it’s the only thing that would provide actual allyship with autistic people from the non-autistic audience that advocates are trying to reach.
What is one thing you hope others gain from Autism Acceptance Month?
Mel Baggs, who was an advocate I really really admire, wrote about the dichotomy of being autistic: on one hand, autistic brains are physically different than those of non-autistics, and we sometimes think and act differently than non-autistic people. On the other hand, autistics are just normal, regular people. I think non-autistics have a tendency not to be able to hold both those facts at once. We are either treated as “special”, “pitiful”, or “sympathetic” on one hand or “just faking it” on the other. It’s hard for non-autistics to just accept the middle ground, to just accept us as people with a difference.
It’s so funny in some ways, because one of the reasons that autistic advocates need to exist is because non-autistic people treat our difference as inherently negative. For the most part, they see autistic differences as bad in and of itself (factually incorrect), which means they know that the difference exists. I made a little graphic to show how this goes:
I think this is true not just of autism, but of disability justice liberation. And maybe even other kinds of liberation work. I can’t really speak to those, besides things around I think people getting over their distrust or dislike of what they perceive as “different” or “other” and unlearning ways in which that manifests is what a lot of disability justice education is about. And then of course, changing actions, but that’s sort of more site specific and difficult to generalize.
I think this goes back to the idea of representation and visibility; it’s useful for the general (non-autistic) public to see autistic, and disabled people more generally, just having regular lives.
For more about Allie, please visit her Instagram where she posts on Autism Pride, Disability Justice, and her everyday life.