Explaining autism is important

Explaining autism is important

I'm going to draw on something important here – my own experiences. So, I was diagnosed at the age of 14, in 2007. And no one explained it to me. Well, people tried, maybe. Just not very well. It wasn't explained as a disability. It wasn't explained as something that impacted me in every part of my life. It was explained as “well this is why you have trouble talking to people and with social interactions and why you have some of these behaviors.” There wasn't anything about sensory issues or effects it had on executive functioning or how it flavored my every experience.

Maybe it was difficult to see how to explain it to a teenager who was also dealing with some personal issues and hitting high school. Mostly, I think the people explaining it to me didn't see it as a disability. My 504 plan in high school (a step below an IEP), from what I knew of it, sought to ease my passage through high school. And it did, enough that I didn't have to self advocate very much or recognize that I had a disability. I just thought “Wow, I suck with people, this must be why,” and left it at that.

No one explained a social model of disability to me that would have helped me understand the impact it had on me. One of my acquaintances looked up my diagnosis on Wikipedia, and that was how I understood it for the next several years. I already knew I had ADHD, so maybe I was just used to being told I had this and that.

It's not enough to tell someone their diagnosis and expect them to find out everything on their own. I mean, Wikipedia was the extent of knowledge found on my own. Some people may call that handholding, but I call it decency and saving someone a lot of pain and trying to find themselves. As it was, I didn't figure out anything about autism until I went to college and met a couple more autistic people, one of whom was already into neurodiversity.

I'll say that again:

It's not enough to tell someone their diagnosis and expect them to find out everything on their own.

Related:

Telling people they're autistic / autism is a disability

• https://chavisory.wordpress.com/2013/11/01/you-should-tell-your-kids-that-theyre-autistic/
• http://realsocialskills.org/post/115768491392/autism-is-a-disability
• http://realsocialskills.org/post/117695362833/autistic-kids-need-to-be-able-to-talk-about

Social model

• http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/social-model/
• https://autismthroughcats.wordpress.com/2014/08/21/disabled-not-disordered/

The social model and when society refuses to admit its part

[Also on Tumblr]

I’m going to reiterate the social model and what this blog advocates for and what I advocate for. It has been said before. I will say it again. For the sake of this post, “society” will stand as the general conception  non-disabled people have of disability – or what they don’t think about in terms of disability.

In a society which disables us and refuses to admit they do so, it is not that we are not fighting hard enough for our rights, for our equity, that our demands are not strong enough – it is that society views disability itself as a malfunction of the human body or brain. It is a strong cultural bias and line of thought that has been around since there were cultures, and, though accentuated and perpetuated greatly by capitalism, is not solely a byproduct of capitalism. If capitalism ceased to exist, ableism would still exist. And there is no perfect world in which we can trust a government and economic system to fully benefit us.

In a society that would rather fix the individual who is not broken (i.e. all the money spent researching cures for autism and prenatal testing research) than spend a bit of extra effort to make things accessible and provide supports (like using alternative communication devices to spread the person’s word, ramps in the front of buildings rather than relegating wheelchair users to the back), we must continue to exist as an act of defiance.

Society does not consider the extra effort the person they are disabling has to put in to get someplace, do something, and perhaps, they are not able to get to where they are going from the failure to provide any meaningful supports or make it accessible, but protests the moment any disabled person brings it up (i.e. academic conferences sometimes both physically lacking accessibility for anyone with a mobility-based physical disability, and language barriers – this can be the classroom, too. Academic jargon is essentially shutting many disabled people out of conversations).

Society protests about the effort they would have to put in.

This is the social model of disability: we can have impairments or different ways of doing things, and society disables us by not allowing us the tools to complete tasks (and by not allowing us the right to human dignity at times).

Society has a lot to work for. 

(While we fight for those rights, please keep in mind that not everyone will be immediately receptive to the idea that they are part of a cultural bias. Please work with them to the extent you can.)