im going to look Actively autistic when im in college. im gonna flap and bob whenever i damn well please and i will take down anyone who makes snide comments at me, i don’t give a fuck if i make allistics uncomfortable
Be your autistic self, be what makes you comfortable, be what makes you happy and what makes you feel alive. And if being openly autistic is safe for you and you think it will bring you joy, then by all means, flap away, little sibling.
Apparently now that I’m not in school anymore I’m all about giant long-form comics.
Identity is a really important topic to me, and the trope of ‘finding yourself’ is almost as problematic and insulting to me as the trope of ‘coming out’.
I want to destroy the idea that some identities are less valid than others, the condescension that comes with ‘they’re just figuring themselves out’, and the insulting dismissal of identity exploration and performance in youth as being somehow not ‘real’, or as ‘attention seeking’. Fuck all of that.
And beyond the fact that ’inconsistent’ identities are really challenging socially, they ALSO carry these real, actual life and liberty risks; we’re expected to use the same name, orientations, values, languages, and identities across all aspects of our lives, we are expected to have normative identities that can be quantified and qualified and trust me, TRUST ME when a person is perceived as having inconsistent or unusual identities they are being flagged in all sorts of systems for extra scrutiny and action. I know this from experience.
So, yeah, this ‘one true identity’, this ‘finding yourself’, this ‘who is the real you’ stuff is bullshit. We are so, so much more interesting than that, and we deserve better.
This is very important to me as someone whose identity has changed a lot over the years – and I don’t just mean gender or sexuality, I mean everything. I am a totally different person than I used to be, and the world can’t really handle that. I’m not interested in my “profession” the way I used to be, and want to do something else. My hobbies has changed, dress sense, opinions on things like piercings, smoking, alcohol. Everything changes. Get over it.
This is amazing.
Some people emphatically prefer to be called people with autism. Others get very offended. Some people empathically prefer to be called autistic people. Others get very offended. There are reasons for all of that.
They have to do with the history of the intellectual and developmental disability community, the autism parent community, and the specific autistic self advocacy community.
For intellectual and developmental disability:
- Most self advocates have a very strong preference for person-first language
- Person-first language in this concept means “I am a PERSON, and I am not going to allow you to treat me as a disability case study, nor am I going to tolerate your diagnostic overshadowing.”
Autism is a developmental disability. There is a highly visible and destructive community of parents who consider themselves to be afflicted with their child’s autism. There is an autistic self advocacy community that developed in part specifically due to the need to counteract the harm being done by autism parents. The language someone prefers will often depend on which of these facts seems most important at a given time.
Regarding developmental disability.
- Folks who are primarily involved in the IDD self advocacy community usually prefer to be called people with autism
- This is for the same reasons people with any sort of developmental disability usually prefer person first language
- In that context, “person with autism” means “I am a PERSON, and you are not going to treat me like an autistic specimen.”
Regarding the destructive autism parent community:
- This parent community pushes the agenda of parents who believe that their child’s autism is a horrible tragedy that befell their parents and family
- They call themselves the autism community, but they consistently refuse to include or listen to autistic self advocates (especially adult self advocates). They only care about neurotypical parent perspectives (and only from parents who think autism is horrifying)
- They promote things like intense behavioral therapy for young children, institutionalization, group homes, sheltered workshops and genetic research aimed at developing prenatal testing. They do not listen to autistic self advocates who object to these things.
- They don’t care about the priorities of autistic self advocates. They do not do any work on issues such as self-directed adult services, enforcing the Olmstead mandate to provide services in the community rather than institutions, or research into skills for listening to people whose communication is atypical
- These parents have an emphatic preference for person first language. They say “people with autism.”
- What they mean by this is “Autism is NOT a part of who my child is, it’s an evil brain slug attached to their head, and I want to remove it at all costs.”
There is also an autistic self advocacy community. It developed in significant part to counteract the harm done by the autism parent community:
- A lot of the agenda of the autistic self advocacy community is the same as the IDD community and pursued in cooperation with the IDD community
- But there is also a lot of work that’s specifically about countering the harm that has been done by the autism parent community
- Much of the worst harm done by the parent community comes from the cultural consensus that autism is like an evil brain slug, and that any amount of brutality is a good thing if it might mean that the slug shrinks or dies
- For this reason, participants in the autistic self advocacy community generally have a very strong objection to person first language
- They call themselves autistic or Autistic.
- In this context, “autistic person” means “Autism is part of who I am. I’m ok. Stop trying to get me to hate myself. You do not need to remove autism to make me into a full person. We are already people. Stop physically and emotionally mutilating people in the name of treatment.”
Neither set of self advocates are wrong. Both positions are legitimate and important to be aware of. In order to know what someone means by their language choices, you have to consider the context.
I think a lot of the autistic and autism communities have this idea that… there’s a type of person called aspie. And those people aren’t ~real autistics~, they just are really good at academic geekery and bad at knowing that people are real.
But there’s this notion that *that* kind of autistic person isn’t really disabled, especially if they can pass.
And there’s a real cognitive subtype that actually *is* associated with receptive language problems, being good at academics and other abstracty things, and being able to pass if you push yourself in certain ways. But those people are disabled too.
And I think – those of us who have been pushed to see ourselves as that subtype when we’re not, when we’d never in a million years be capable of that, often end up being somewhat repulsed by people who *do* have that particular cognitive configuration.
And it’s not ok. Because the ableism we face isn’t their fault, and they’re no more free of it than we are. And we need to not be part of the problem.
The aspie hate things people say are not accurate descriptions of *anyone’s* cognitive type.
This is true and valid and I agree we need to stop eating our own.
Though I want to say something about the aspie subtype. As someone who benefited from that label (and no long IDs as an aspie), I’ve always felt that non-autistics and neurotypicals tend to value one subtype over the other. They usually are the once that sort of enforce this schism. Aspies are portrayed as goofy, cute, white boys who just want to fit in. People see they stereotype of them being good with math and computers as marketable. They seek out IT type aspies. Whilst everyone else gets passed over. The problem is many of them that are articulate, passing and have enough social reading, they end up buying this well constructed lie that they are far more valuable than non-speaking, chronically ill or non passing autists. So they end up throwing us under the bus.
This is not a new phenomena. Nevertheless it’s still fugging awful. My problem is not aspies but the NTs and the allistics that enforce and build this massive schism up. They want us in-fight, they want the aspies to talk over us over issues, they want the resentment. This hierarchy is artificial and awful and we need to destroy it.
So yes, they are disabled, but they also benefit a great many privileges too they need to realize themselves that we’re all drowning.
I have no problem personally with the term ‘Aspie’ or people who identify as such, but I stopped using it to identify myself because I realised that it came with baggage. Functioning label baggage. ‘Asperger’, for people who even know the term, tends to be equated with ‘high achiever’. It tends to imply that the person will go far if they find the right career, will succeed in academia if they find the right specialty. It implies a level of competence that I consistently failed to be able to live up to.
Now, my diagnosis was for Asperger Syndrome plus a handful of other things, and don’t get me wrong, I don’t think any diagnostician would diagnose me differently. I am highly verbal, highly literate, and as a child I learnt to pass to a degree and I live with that privilege/curse every day. But I failed out of my last year of high school and four further education attempts because the social stresses and expectations pushed my anxiety through the roof and into burnout so severe I was housebound. I had a handful of minimum wage jobs, one I know I was fired from because of my (then un-dxed) autism, and two that I probably stopped getting shifts from because of my short-term memory issues and my failure to grasp things at times that seemed easy or common sense to those around me.
‘Aspie’, with its connotations of competence behind a quirky, eccentric shell, made those around me – family, social workers, employment case managers – think that I just wasn’t trying hard enough. And that was crushing.
I realised when I started reading about other autistic people, that I always seemed to find more in common with ‘autistic’ rather than ‘Aspie’ autobiographers. Even if our actual life experiences were very different, ‘autistic’ authors seemed to write more about problems I faced, and seemed to more often have a world view closer to my own.
‘Aspie’ began to seem very limited, while ‘autistic’ encompassed the whole of my identity and disability. It had the flexibility I needed to cover my experience.
Add to that, I have a running tally for how many people I once loved and respected who have made the ‘arse burgers’ joke to my face when I disclosed. The first time was a very old and dear friend at my birthday dinner, a handful of months after my diagnosis. At the time, only a few people close to me knew. Every time someone makes that joke it catches me unguarded, and every time it hurts. I will never understand why people think that making that joke when someone is in such an incredibly vulnerable place is acceptable. Every time, it’s as if they think they’re the first person to think of it, and that they’re hilarious. At least the word ‘autistic’ gives me one less vulnerable place than if I use the word ‘Asperger’.
knitting in the dark 