There are many voices in the autism community talking about how we have a hard time being understood by non-autistics. Mine is among them. But it recently really began to dawn on me just what the differences in our ways of thinking entail. And as I ponder this, it seems to me that I’ve had difficulties understanding non-aspies in the same way that they misunderstand me.
Unlike many aspies, I’m pretty decent at socializing. It tires me horribly, but I can get into “social mode” and make it through a social function, coming off to everyone there as “normal,” maybe even delightful. (I’m pushing it, I know. :p) But this is a persona based on imitating what I’ve observed as appropriate and entertaining behavior in others. It’s a mask made of my own genius.
On a much more fundamental level, the processes that take place in my mind as I take in information are very different from those in others. I don’t feel the way others do about things. I’m not patriotic, I’m not a sports fan, I’m very nonreligious, I’m not a feminist or an ally, I’m not outraged by the injustices that people bring up every day on Facebook, and there are many other things that seem to define a normal way of thinking that are totally alien to me. It’s as if I was born on another planet, and I’ve always felt that way. My sisters could tell you about the years of my childhood when I fantasized that I’d been born on Mars. Even back then, I picked up on the fact that there was something different about me.
And even though there are also differences in the way even individual aspies think, feel, and process information, I think we all know what it feels like to be different. In my opinion, the best way to begin fostering understanding between us and non-autistics is to work to understand them. It might make an interesting academic study.
Michelle Vines’s new book, Asperger’s on the Inside, is coming out on April 8, which just happens to be Autism Awareness Month. Hurray! It’s not a dry textbook about the clinical definition of Autism. It’s a personal story about her life and how it was affected by her Asperger’s Syndrome.
I’ve spent more time in Autcraft and learned a lot about how things work there, and it is pretty cool. They have different worlds set up for different things, like four separate worlds to build in (two peaceful worlds and two hard worlds), a world for gathering resources, worlds for mini games, quiet worlds where there’s no chat, and more. The resource-gathering worlds reset monthly, so all resources are renewable, unlike in a normal Minecraft world where the resources are still vast but finite.
There are also things you can buy, like commands that heal you, fill your food bar, and repair your equipment. For $2 a month, I have the ability to repair all of my equipment an unlimited number of times whenever I want. They also have one-time-purchase packages that give you a status in the chat (iron, gold, and diamond) and access to other commands. The iron status is $20, the gold status is $50, and the diamond status is $100. With diamond comes the ability to fly and designate up to ten homes, so I really want to get that.
As before, the community is very friendly and helpful, and they keep a close eye on the chat to ensure that any unpleasant interactions are kept to a minimum. I highly recommend it to autistic kids, autistic adults, and their families.
Aspies are a quirky bunch, and we each have our own individual quirks. As I get to understand myself better and better, I find myself becoming aware of things that I do that are classic aspie things, like looking for just the right spoon to eat my morning cereal. The funny thing is, as I’m more aware that I do these things, it doesn’t make me want to do them any less. As I look for the spoon with the right shape, depth, and design on the handle, I know that it doesn’t really matter which spoon I use, but I still get the same satisfaction from finding and using the right one.
It really doesn’t matter that some of the things we do are neurotic and unnecessary. If it doesn’t hurt anybody and it gives you a level of peace of mind, it’s fine. We have reasons for wanting to sit at the right spot on the couch while we watch TV, line things up in just the right order, and drink juice from the cup whose color matches the bowl we’re eating dinner from. It might not make sense to other people, but it makes sense to us, and we’re happy to explain if you’re curious. :p
Aspies have it tough. I know a few people who are very negative about their aspergers and life in general. As depressing as it can be to be around them for very long, I can see where they’re coming from. After high school, I spent years wondering why I couldn’t go on to live a normal life like everybody else. Realizing that I’m not like everybody else didn’t help much, because it didn’t tell me where I belonged. It only told me where I don’t belong.
But as I drifted through life, some of my choices took me away from the life of misery that I thought I was doomed for. I stopped trying to live to gain everyone else’s approval, and as the stress eased, I was able to think more clearly and make even more wise choices. I grew up, and contrary to popular belief, adulthood has many perks.
I take great pride in little things that other people would take for granted, like when I met with clients recently to discuss their wedding and what kind of pictures they want me to take. My girlfriend helped me to pick out a suit, and I got a great deal on a very nice one. I do volunteer work and build a reputation as a productive member of a community. I love that I can use my talents and skills to serve other people, because for so long, I felt like an outsider.
Finding a way to do what I like to do in order to serve other people was the key to finding my place in the world, and I’m so grateful to everyone who helped me along the way.
I had an insight last night that I’m sure would ruffle a lot of feathers and possibly start a fecal meteorological event in some mixed circles if voiced too publicly or too often.
I’m sure it’s uncontroversial here, which is why I’m writing this post here; at any rate I tend to be of the opinion that while it’s helpful to have NT researchers studying autism & writing about it, the real autism experts are autistic people themselves. The experts among experts are the up and coming adult-diagnosed people who are both trained mental health professionals and also have a lifetime’s experience of being autistic. And it’s incredibly insulting and hurtful for a supposed NT “expert” to tell an ASD person that they’re “NOT” autistic, in their professional opinion. I see this tragedy play out in far too many narratives in the adult with Asperger’s Facebook groups to which I belong.
The real controversial insight I had the other night and mentioned in one of these adult Aspie groups on FB, as a riposte to someone defending the correctness (or at least the practical necessity of) of the “medical model” of (formal) Autism diagnosis (which is indeed required for government benefits, legal protections, etc, because that is how bureaucracies work in general)…I pointed out how gays and lesbians don’t need psychologists/psychiatrists to validate if they’re “really” homosexual or not. THEY KNOW. They know it in their bones, with every fiber of their being. I assert it is the same with the Autism spectrum. We know better than anyone that we are, regardless what someone in a white lab coat with letters after their name may opine about us.
It struck me, the absurdity of the mental image of a hypothetical gay person hoping their shrink will give them the formal “gay” diagnosis…and realized it’s no less absurd for us on the Autism spectrum. Why would any sane person “fake” being autistic? Some of us may be more profoundly impacted than others, on different parts of the spectrum from others, but we’re all on the Autism spectrum somewhere, even if it’s only a handful of traits that don’t fully add up to an “official” diagnosis. I’m very fortunate to live in a white, middle class North American family able to afford my COBRA premiums and use that extended coverage to obtain my Asperger’s syndrome diagnosis in the summer of 2010. This diagnosis was very fortuitous because it helped me save my new job (thanks ADA!) about 6 months later. This summer marks my 5th year in that job and I’ll be honored by my local government authority that is my actual employer at the end of this month.
My attitude towards the self-diagnosed is to believe them and grant them the benefit of the doubt. It doesn’t take very long for the average Aspie to relate key elements of their life story in a few paragraphs. I’m reasonably well-red, having engaged in a lot of self-study after my formal DX. I know tell-tale signs to look for, even beyond my own personal parameters (i.e. eye contact isn’t a big deal for me, but I know it is for many Aspies). Sometimes the length/long-windedness of a Facebook post is enough to click the “Aspie recognition” switch in my head. I realize government bureaucracies can’t be run on the basis of what must strike NT researchers as highly subjective approaches…how scientific is “Gaydar”, after all? Yet I feel like I have my own built in “Autisticator” and am pretty decent at picking out my own tribe through behavioral observation “in the wild”. We need more ASD people to get credentialed in the Mental Health profession to act as advocates for the undiagnosed who are suffering and in need of possible government benefits and legal protections that would otherwise be denied these disabled people owing to lack of official documentation. Gay people don’t have to prove they’re gay to avail themselves of non-discrimination protections where they exist. It sounds absurd on its face. This absurdity carries over in parallel and underscores the limitations of the medical model for Autism and autistic disability. It’s less like a physical infirmity and more like a neurological mode of being that differs from the norm. It’s really shameful Autistic people have to jump through barriers erected by skeptical, “old school” NT mental health professionals, some of whom don’t even accept Asperger’s as a real diagnosis, or consciously or unconsciously cling to Leo Kanner’s outdated, narrow views on autism, restricted to only the most extreme cases. This needs to change and is part of the Neurodiversity struggle for our Civil and basic Human Rights.
From 9th – 11th grade, I was very self-conscious about looking and smelling nice outside of my domicile (I cared about this while at home too, but not as much as outside it). So much so that it played a significant role in me missing over 2 semesters of school from the latter half of 8th grade through 11th grade (a period of 4 ½ years in my case). This resulted in me having to take an extra semester of high school in the fall of 2008 before I could officially be finished with school. (There were other factors that contributed to such extensive absence from school, but those are posts for another day.)
Thankfully, since then, I’ve overcome that self-consciousness thanks to various coping methods. The most significant being that I no longer worry near as much as I used to about what people may or may not think about my level of cleanliness. While still maintaining an appropriate degree of cleanliness by my own standards and the standards of most others I know.
To this day, the best I can say as to why I felt this way for so long was due to at least one of many facets of my Asperger’s Syndrome.