29: Why am I so sensitive about language?
Exploring the meaning behind “autism” vs. “autistic”
Like many late diagnosed autistic people, I spent the first several weeks after my diagnosis dividing deep into the wealth of information shared on social media and various websites by the autistic community. Every day was filled with revelations - learning that there were so many others with experiences similar to mine, understanding that we’ve all been conditioned to think of autism as a disorder rather than as a natural variation, learning that most autism organizations actually spend the majority of their time and money trying to get rid of autism rather than to support autistic people, and learning to embrace the idea that I am autistic (not a person with autism). Many of these “aha” moments involved language and the subtle differences in how autistic people talk about autism vs. how parents of autistic kids talk about it or how neurotypical-led autism organizations and researchers describe it.
The underlying difference in the use of language around autism is that one group is embracing autism as something to be proud of and to encourage broad acceptance of, and the other group is regarding autism as a disorder that needs to be cured, and hidden or covered up as much as possible until a cure becomes available. The former is called the “social model” of autism and the latter is called the “medical model”. In Western society, we use the medical model for almost everything - continually looking for ways to get rid of variation and to help everyone experience a “normal” life. We have a medication for almost anything you can imagine, and we worry when our kids appear “different” than others. We call things “conditions” and “disorders” rather than “differences” or “variations”, and we’re constantly comparing ourselves to what we imagine everyone else is doing or thinking.
I have subscribed to the medical model, or deficit mindset, my entire life, always feeling that something was wrong with me because I was different, always looking to take extreme measures to earn acceptance among others (which never worked), and constantly comparing myself unfavorably to what I thought the “norm” was, while simultaneously judging others who seemed further from the mark than me. As I’ve learned more about the social model, I am eagerly embracing it intellectually - I find it beautiful and inspiring, as well as reassuring and comforting. But, like most things, it’s not so simple. There are two things I find myself struggling with. One, deep down I think I still “pathologize” myself rather than accept myself (despite my new intellectual awareness of the social model). Two, I find myself becoming more judgmental of others, but in a different way than before. Instead of judging divergent people for being different, I find myself condemning (in my head) people who adhere to the medical model that is so deeply ingrained in our culture.
I know that I am a skinny person by objective standards, and yet I resist having dessert or eating richer foods. In the same vein, while I’ve come to an intellectual understanding that my autism explains why I see and interact with the world differently than many, I often refer to myself as “weird”, assume that my perspective is “wrong”, or default to thinking that “I don’t get it”. I don’t really feel confident in my differentness - I still feel, deep down, that my difference is a negative (perhaps because it is something I have to explain, or something that causes me to have preferences and ideas that others don’t understand and don’t like). I think that the medical model is so deeply ingrained in me, as well as in all of us, that it’s hard to truly accept myself, and it’s also hard not to feel the judgment of others. Intellectual understanding is on the surface; just because I am aware of the social model doesn’t mean that I believe it’s really true deep down.
In the midst of judging myself and feeling judged, it’s also hard to resist judging others as a first instinct when faced with different attitudes on autism. Now that I have worked to educate myself, I feel enlightened. I realize why the neurotypical perspective is offensive and problematic. I can now see the subtle anti-autistic nuances all over the place, and they jump out at me, they make me cringe. When I hear someone say, “People with autism” I want to cut them off and say, “You mean autistic people.” When I hear people talk about the “treatments” they are using with their autistic child, I want to say, “autism is not a disease to be treated. We need to work on making society more accepting instead.” When I hear a parent of an autistic kid talk about how hard their situation is, I want to scold them for blaming their child’s brain for their discomfort and fatigue.
And yet, when my child has a tantrum that won’t end, I also get frustrated. I know how hard it is. When I was in my twenties I worked with autistic kids, and then adults, and I know how it can be. I’ve had feces thrown at me, I’ve been bit and scratched to the extent that I needed a tetanus shot and stitches, I’ve experienced meltdowns in public that were embarrassing and terrifying - because I was worried about what others would think, but also because I was worried that the person having the meltdown my cause harm to themselves, someone else, or cause damage of some kind. When the parents came at the end of the day to pick up their kids, I remember feeling such pity for them. I worked with these kids for seven hours a day and it wore me out. Their parents had them for the other 17 hours. I thought about not having kids of my own because I couldn’t imagine how hard it would be to end up with one of these children. Looking back, it makes me sad to remember that I thought those things. Those kids were just trying to make sense out of their worlds. I thought I was doing good by working with them, but I was part of the system that pathologized them.
Reconciling the contradictions
I admire the activists that I see on twitter. They appear so confident and self-assured in their comments. When I read tweets like the one below I think, “Yeah! You tell ‘em!”:
The beauty of this proclamation is in its honesty, its boldness, and its careful defense of a marginalized group while also acknowledging that there are those (anti-vaxxers, for example) who have used the growth in autism diagnosis for ill. I think this captures the “blunt” directness that autistics are often criticized for, in a way that feels hard to argue with. But, of course, I’m sure arguments ensued (I don’t click into the threads to see the back and forth, it causes me too much anxiety).
At the same time, I think the doctor this tweet is directed at is making a fair point. When I was diagnosed, I felt the process was highly subjective and that I could probably see another doctor and get a different diagnosis. I wrote about this in detail, and the questions still remain for me. If two doctors could meet with the same patient and come to different conclusions based on their subjective interpretations, then what is an autism diagnosis, really? All we can do is ask questions and interpret answers, weigh different sources of information, compare data points, and make a judgment call. Like with alcoholism, autism is something you come to know about yourself deep down. The external diagnosis doesn’t really matter (unless you need accommodations or assistance from the state, in which case it matters quite a lot).
I don’t want to argue. I don’t want to start a fight. I’m not the kind of person that yells on twitter; I’m not someone who calls people out in public. But I want others to have the same revelations that I have had. I want people to see things the way I have learned to see them. I want people to stop being wrong. I think this is what happens when I discover something I really care about. Suddenly, it’s not enough to just care about the thing - I want others to also care. I want everyone to have the same understanding that I have gained. I want others to learn and appreciate just as I have. If they knew what I knew, there wouldn’t be a need to argue.
The problem, of course, is that the people on the other side of the argument feel the same way. With how to talk and think about autism, as with so many other things, we want others to see that our perspective is the correct one. There is no middle ground. We can’t quite grasp that there is no clear “right” and “wrong” and things aren’t not as simple as we make them out to be. It’s hard for us to hold conflicting thoughts in our heads and be OK with it. We want resolution and clarity, no matter how complex the issues.
As I write, and speak publicly about being a late diagnosed autistic person, I am seeking to educate but not to alienate, to correct misunderstandings, but not to demonize, to encourage people to adopt the language and mindset of the social model, but not to declare invalid other ways of thinking. It’s a hard balance to strike, and it feels inadequate when I think about the unimaginable scale of society at large and the sheer numbers of minds that have to be influenced. And this is just one issue on what feels like an endless list of things to debate and disagree about. It’s hard to remain hopeful - until I get reminded that what I see on twitter is not a reflection of all of society.
I had a conversation yesterday where someone told me how helpful my writing was to them, and I had no idea that this person had ever seen my writing or even knew I was autistic. She said it changed her way of thinking about her autistic daughter. That was motivating, and inspiring, and a hopeful sign that change is possible, even in the polarized mess that we’re living in day to day.