The Alternate Lexicon
Currently viewing the tag: "asperger’s"
I tend to enjoy the Thinking Person’s Guide to Autism, a group blog authored by adults and teens on the spectrum and family members of people on the spectrum, with a decidedly pro-science, pro-research bent. A recent post about presuppositions got me thinking about the value of diagnosis (self or professional) and being open about that diagnosis.
Okay, so presuppositions are the assumptions all people make about the way other humans work. Everyone has them, but sometimes they don’t match up very well–this is where conflict happens. They involve all axes of oppression (class, race, cultural background, gender, etc) and when we interact with someone who is not a close match of our own experiences, we tend to rely on stereotypes to form our presuppositions about how they will behave.
This is, obviously, a big sticking point for people on the spectrum. We don’t naturally behave or respond the way most people do, at least not innately. Things like delays, stimming, lack of eye contact, avoidance of people, they’re all traditionally seen by researchers through their own presuppositions; that is to say, researchers make assumptions about what autistic behaviour means based on what it would mean IF A NT PERSON behaved that way, rather than consulting autistics and getting a general consensus. See the problem?
This is all related to being aware of being autistic (via self or professional diagnosis) and being open about it because I think that is the only way we are going to change the stereotypes associated with autism–the basis of people’s presuppositons about US. If I am distant or use stalling techniques while my brain catches up to what I just heard, it isn’t because I don’t like other people or because I didn’t deem the person speaking to me important enough to pay attention! It isn’t that I don’t care. It’s that my brain gets easily overwhelmed and I need to sort out how best to answer or behave. Being open about being autistic and (sometimes) able to discuss this idea with NT people means I can, hopefully, gradually shift their perceptions and assumptions about how autistic people react, think, and behave.
The conversation usually goes one of two ways:
The first:
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: No way. You can talk [or work or live independently or cook my own food].
Me: Officially diagnosed and everything*. Autism is a very broad spectrum of people with difficulties communicating and socializing typically, and we’re as individual as anyone else.
The second:
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: Oh. I would never have guessed. You are such a good example for people with autism.
Me: You know that’s really demeaning to everyone else with autism, right?
I am discomforting to people not familiar with social justice and disability rights. I am the worst sort of disabled person, because I have an invisible disability and I can fake being neurotypical, at least for a while. I am a secret spy for the disability community, come to infiltrate the temporarily able world at large with my sarcasm and socially unremarkable stims. I call them out on their language and attitudes and then have the audacity to reveal I have fooled them all along. This does not usually go over well (see above).
I have spent the past three months officially in this position, and it does not get less awkward.
So I thought I’d talk about ways I would prefer this conversation to go. Bear in mind that this is relevant only to conversations with me, as I cannot speak for the broader autism community, and autism is a special interest of mine, so I have a lot of facts ready to be provided on request.
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: Really? I didn’t know–sorry, didn’t mean to joke about a sensitive topic.
Me: It’s okay. There are a lot of adults like me on the spectrum, though, who may not be read as neurodivergent but really are. You might want to consider that before speaking.
This is sort of the baseline of what I would consider a good conversation on the topic. When someone comes out to you in some way, revealing a sexuality, gender ID, neurodivergence, what have you, that you didn’t previously know about and have been making fun of, it is a good thing to apologize. If you are making fun of it after knowing, then you’re an asshole.
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: You know, I wondered about that. You can be very [negative stereotype--usually "emotionally distant" or "stand-offish" for me].
Me: Well, that’s a stereotype–there are a lot associated with autism, many of which are only the tiniest bit true. I might seem stand-offish, but I’m really just trying to [listen/understand what's being said/ignore sensory imput/reduce my anxiety levels/work out when it's my turn to talk].
I think it’s a very human thing to relate what we abstractly know to personal situations. When I tell people I’m autistic, it probably makes sense to relate it to what my interlocutor knows about autism (usually precious little). While this pattern can be annoying, it gives us the opportunity for learning and growth–something I’m usually up for helping with.
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: Oh. I thought that was a thing kids have.
Me: Kids grow up, and a lot of the behaviours that people associate with autism are things kids on the spectrum do, but not all or even most adults on the spectrum do. We can learn and grow perfectly fine, we just do it atypically. I’m 26, so my experience is going to be different than that of a six year old.
Other person: That makes a lot of sense. What is autism like for you?
This is one of my favourites. The huge push for autism awareness has created a background awareness for a lot of people, but it’s awareness of the wrong sort. Simple statistics would reveal that more people on the spectrum are adults than not, but the focus is on what autism looks like in very young children. This obviously leads to the assumption that either you outgrow it, die from it, or you remain just like a three year old forever and ever. I’m not a little kid anymore! Even if I have to remind you of that, being aware that autism is different for each of us is appreciated.
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: Interesting. So [have you seen the new whatever/done something I'd spoken about previously/read this awesome book/something totally unrelated]?
Autism awareness will begin to shift into acceptance when I can tell someone that I’m autistic and it doesn’t make a damned bit of difference in how they interact with me.
*I’m a fan of self-diagnosis and was comfortably self-diagnosed for years. Had I not had the opportunity to sit an eval for free, I probably still would be self-diagnosed. Unfortunately, the sorts of people who insist I cannot be really autistic place a lot of weight on official labels.
Tagged with: ableism • asperger's • autism • BADD 2011 • blogging against disablism day • disablism • frustrations • neurodiversity • utter pedantry
I turn 26 tomorrow. It is also World Autism Day.
When I tell people I’m queer, it becomes a part of their idea of my identity. I mention my girlfriend, and a little light dings in their head to place me into the QUEER category of mental filing. They might be surprised or confused or alter how they interact with me (or not), and it might take a few further interactions for them to get that I mean queer in the broadest way and, yes, they can seriously still point out that cute boy and I’m not just humouring them when I agree.
Most people have a lexicon and background knowledge of what it means to be queer in some way. We broadly make up about 1 in 10, so there’s an awful lot of us out there being non cishet in some fashion. People recognize the concepts of bullying and gay-bashing, there are tv and movie characters who are out and proud, there are celebrities. I can say that I’m queer and it means something that we mutually understand, even if clarification might be needed on the details.
When I tell people I’m autistic, they don’t know quite how to react. Autism is kids in corners who headbang, boys who can’t speak or won’t speak, right? Autism isn’t adults who hold down steady jobs–including ones with customer service aspects!–and speak fluently (most of the time). The box in people’s heads is too small and ill-defined to fit me, and they are surprised, sometimes even angry.
Autism awareness isn’t inherently a bad idea, but the narrow scope of the spectrum that is promoted for awareness is very much dangerous and harmful for the rest of us. Autism, for me, means making enough of a single food to eat for a week, because making different food every day feels overwhelming. It means planning and rehearsing conversations, and then worrying when things don’t go as planned. It means auditory processing issues that leave me nodding at work and hoping I’ve timed it right, or not being able to hear over the sound of the tram. It means sensory issues that make it hard to hold my girlfriend’s hand sometimes. It means an encyclopedic knowledge of Kate Miller-Heidke lyrics. It means misunderstandings and hurt and bullying. And none of those are things you can see, if you don’t know what you’re looking for.
I want an autism awareness campaign that promotes actual awareness of the huge, wonderful spectrum that encompasses all of us. We each have our own strengths and weaknesses; what we share is an unusual way of experiencing the world. When I tell people I’m autistic, I want them to be able to easily fit me inside that mental box and understand that it means I might not be great at social cues and probably like routines, that I’m probably good with facts and rules, and that I probably have some sensory issues to work around.
Even more, I want people to understand that we–every single person–can inhabit more than one box. My mental filing system cross-indexes, fuckers, and yours can, too, with some practice. My being queer is not invalidated by autism, nor is autism invalidated by my being queer. It is often people who know that I’m queer who seem most surprised when I mention autism, because I am already in one minority group box in their heads.
Intersectionality is the concept of how different oppressions mix. Every person who belongs to multiple minority groups will experience it differently. For me, being queer, autistic, and genderqueer, it means erasure. I am allowed to be queer or autistic (gender doesn’t even cross most people’s minds, and since I’m not picky about pronouns it sometimes doesn’t come up).
I want to live in a world where it means acceptance. That starts with true awareness, not trite campaigns.
Tagged with: ableism • ali • asperger's • autism • disablism • gender • kit • neurodiversity • queer • utter pedantry
So, when you get unfriended in facebook, is that the point where I have to stop referencing them as if I have actual friends so people at work think I’m less of a freak? Because my circle of friends is pretty much limited to Hez, Kit, and Sarah right now. I think a huge, huge part of me has been thinking that when I get back in therapy (next week? Might’ve found someone I like finally), I’d work out how to forgive and forget (not skills I currently have) and we could be friends again. I guess not.
Will I ever stop feeling so sad? I can’t even make steps towards making friends here because everyone gets measured against the litmus test of fucking Stina and Dylan. I want best friends. I want my best friends again.
I’m a failure.
Tagged with: ali • asperger's • autism • depression • dissolution of a friendship • friends • frustrations • therapy
I miss Stina and Dylan.
I have a lot of other things I could, and probably should, say, too. Things about how I can’t forgive people who aren’t sorry, and how I still start to email or text to tell them little things before I remember we’re not speaking. Things about how I cry pretty much whenever I think about them. Things about how I didn’t volunteer to go to Harrisonburg for training at work because it felt too close. Fuck, I want to tell them how we’re going to Disney, because they (especially Stina) love Disney. I want to tell them the diagnosis is official, and doesn’t that make them feel shitty for the snide comments and scare quotes?
I want to tell them everything. But we aren’t speaking. And I can’t forgive people who aren’t sorry.
Tagged with: ableism • ali • asperger's • autism • depression • disablism • dissolution of a friendship • friends • frustrations • kit
I’ve been officially labelled.
It’s been a long time coming; years of wondering and researching and affirming have built to today. I’ve dissected my thought patterns, my behaviour, my exchanges with other people, and it all led me back to autism. I knew. Now I have a bit of paper backing me up.
My official dignostic label is Asperger’s syndrome. The highlights from my meeting include a persistent-tending-towards-unhelpful eye for pattern and detail, excellent verbal communication skills with few nonverbals to back them up, and literal thinking. These are all things I’d remarked upon before, and it feels reassuring to have professionals notice and remark upon them, too. No matter how dutifully one tries to be introspective, there is a certain point at which no one can tell truth from personal fiction, and I had a persistent fear I’d somehow crossed that line despite how well the category fit.
It was interesting to get to experience the ADOS (section 4) and speak with someone who is also passionately interested in autism for hours. I regret missing the cue to ask about my examiner’s autism-related blog (completely missed that), because I think it would be interesting to read (though, as I actually responded to her telling me she blogs about autism, I’ve probably read it!).
Parts of the interview were really difficult. It’s frustrating to discuss emotions and when I feel them when I struggle to identify those things at all and the categories she presented felt artificial. Does anyone feel just sad or just angry or just anxious or just afraid? How can you tell which one it is? They’re all jumbled together for me and I don’t know I could separate any of them (save maybe fear) into its own box and label it appropriately. It was also really hard to talk about Stina and Dylan and how I felt about being lonely. I’ve felt a bit raw about them since we fought and especially in the last couple of weeks as Kitty and I try to plan going to Disney, a place I associate strongly with Stina and Dylan.
Part of my interview involved working out the story of this book. It’s beautiful and the illustrations are exceptionally detailed–just the sort of thing I like. Apparently I saw things that no one had ever mentioned before in those details. That’s me: missing the big picture half the time, but wonderfully observant about things that interest me.
I want to thank TEACCH for providing this service to me at no charge. It means a lot to have an official diagnosis in my pocket in the event I do need any sort of services or accomodations, and it means even more that the state of North Carolina makes it available for all residents who need it.
A memo to all of my coworkers, who will not, of course, read this, because if I told you what my website was I’d have to self-censor more and I’m super uninterested in doing that:
Yep, you heard me correctly, I’m autistic. See, autism is a vague group of behaviours and ways of processing the world we all share, and no two people on the spectrum are identical any more than any two people who are NT are identical.
You’ve seen me stimming, but apparently without knowing about autism you’d just thought I was fidgety. Ha! Trick’s on you: stimming IS just being fidgety for people on the spectrum. We stim for the same reasons any other person might tap their feet or shake their legs in a meeting: it provides sensory stimulation that helps us regulate our behaviour and emotions.
The thing about autism is that it makes me really awesome at some stuff, and really not awesome at other stuff. My particular, unique brand of autism makes me really good at learning scripts (“Please let me put this thermometer back under your tongue along the gumline.”) and repetitive actions like taking a blood sample. It also makes me really bad at some stuff I have to do at work, like multitasking and listening to multiple things at the same time. I’m sorry you were speaking to me and I walked away–I was busy hearing the faint harmony line in this song on the piped-in radio station.
Autism also makes me prone to these things that I’ve called a few different names in the past: panic attacks, tantrums, meltdowns. They happen when I’m feeling overwhelmed and without any control (and usually when I’m tired and/or hungry). I know my limits and my strengths, and ask that they be respected like any other person’s–even if they seem like they’re weird.
When you start requiring me to do multiple things I’m really bad at (like listening to two imputs and multitasking at the same time), there is a very strong chance I’m going to have to go cry somewhere and might scare off donors.
Can we please not make that happen? And can we please not laugh at me when I ask?
Thanks.
Suffice to say, as far as the job goes, that I am officially prohibited from talking about it, as a Big Pharma Shill of the lowliest rank. I’m enjoying it and seem to be learning quickly.
I wish I could say that I learn quickly in the rest of my life.
My Official Autism Eval Thing is scheduled for this February 18th, and I’m feeling sort of numb about the whole thing.
I’ve started to wonder if perhaps feeling neutral or numb is some sort of response to having too much emotion or feeling, at least some of the time. There is absolutely a point where I am so physically uncomfortable that I become unable to experience further discomfort; in the reverse, I’m capable of being pretty physically neutral, neither exceptionally comfortable or uncomfortable. There are times that I really do feel neutrally about a given subject or event or person or any other direct object of my emotions, and this is an appropriate level of shit-giving. But there are times that I probably should feel more intensely than I do, and recentish events have caused me to reflect if that’s not some sort of really terrible coping mechanism.
Bluntly, I feel…okay about Christina (and, by default and/or tacit agreement and not ever talking to me, Dylan) ending our friendship. And I don’t think I’m meant to, quite yet. I spent days and days heartbroken and crying randomly; it was even worse than when everything ended with Alice because there were almost three extra years involved–three years we’d largely spent living together or next door to one another. And then I woke up, and it was all just gone, and that seems really weird to me. It makes much more sense that my brain decided that this level of emotion is just not viable long-term and turned the whole thing off for a while. That, in turn, helps explain a lot of weird emotional things I remember, both recent and not recent.
I think this level of sensation is directly correlated with meltdowns, for me, at least. And I think that this self-control response of total shutdown of emotion probably has the potential for weird neurological effects, like the part where I don’t remember a lot of the particulars of really nasty meltdowns. I think that my brain is trying to insulate me from feeling everything so strongly and acutely that it becomes difficult for me to even remember the events as they actually occured, because my memory is fuzzy to prevent me from feeling those things again. It’s not a perfect system, though, because I do remember some snatches of image or sound, and the further away temporally I get from any event the better my chances of remembering or feeling it properly are.
I spent a little over a month not feeling anything related to Stina and Dylan.
A coworker made a joke about not having any friends, and I responded that my friends had abandoned me. I got home tonight, and started to cry. The only real way to deal with this emotion and hurt and anger is to feel it, and work through it. Apologies in advance for any meltdowns it triggers, but I think I’m ready to do this like an adult. Maybe.
Damn, I need a therapist. As soon as my shiny insurance card arrives (seriously good insurance for cheap, yes please!), I shall have this thing.
It’s been an interesting week.
Yesterday I quit my job, the one I didn’t like and had to drive an hour each way to do. I have interviews scheduled and a lot of hope, and a lot of horrible anxiety, which is why I now have vanilla coke. It helps.
Thursday and Friday, I exchanged emails with Stina which curiously involved me apologizing an awful lot and her not at all, because I very strongly value having her as my friend even if she isn’t a nice person (1). I also learned from Kitty that generalizing lessons about emotional intimacy is probably a good move. Huh. Anyway, this led to an awful lot of sobbing and feeling pretty much like I must be broken in some way to not be able to sustain my friendships from college. And that led to…
Opening an email from Alice. It’s been sitting in my inbox, marked as read, for just over four months. I didn’t open it originally because it was two days before I started my new job (which turned out terribly anyway) and I might not make a personality disorder out of it, but I can certainly be avoidant. I didn’t open it later because it’d been a long time. Then I didn’t open it out of habit. So I opened it, and it was a very long, beautiful, heartbreaking apology letter (I habitually distrust email subject lines, so the fact that it said it was an apology didn’t convince me). It was everything I would love to get from Stina and Dylan and don’t really expect.
So then I cried some more. And then my job was over and I slept for ages. And then I went to the farmer’s market with my mom and we bonded (! I KNOW!) over apparently being unable to make our loved ones feel emotionally connected to us because we are demonstrative sort of people, not declarative, and apparently that makes people really annoyed. And then I wrote a blog post about it using really terrible grammar.
AND THEN I DECLARED THAT I AM A ROBOT MADE OUT OF MUSCLE.
And then it was over. Except for a footnote.
1. I would like to know why it’s okay to say that when we’re friends, but not when we’re fighting. I genuinely do not understand the difference. I’m expressing the exact same sentiment, but it was hilarious once and now apparently elicits tears.
Tagged with: ali • AND THEN BAD GRAMMAR HAPPENED • apologies • asperger's • autism • depression • disablism • dissolution of a friendship • family • friends • frustrations • kit • loneliness • meta • omg • utter pedantry • work
It’s slow, this process. Change passwords, make previously open things private. Extricate myself from your life one photo at a time.
I cry, sometimes without warning or explanation. I am relieved, grateful when my coworkers say they’ll miss me, give me phone numbers and talk of a party. Parties terrify me; I loathe them to the depths of my being, but they don’t have to know any of that because I appreciate the consideration. None of them are friends, but they’re nice enough people.
We talked about that, once. Friendship was an exclusive club to the two of us, something we extended rarely and selectively. We talked about how valuable it was, and how glad we were to have found each other. I believed every word of it.
I believed every word of it. You told me, so it must be true.
I doubt you think of me, or miss me, or have any regrets. Spending a day with your husband (and his friend) was more important than seeing someone who had been your best friend of seven years, at considerable expense and travel on my part. You’ve never seen where I live. Coming to me has never been an option. I’m only worth your time if I show up and do what you want me to do.
And fuck you, because I would forgive you if you fucking asked. If you had the decency to write and say you missed me, you’re sorry, any gesture of reconcilliation or apology, I would fall over myself to forgive you, because you are my best friend of seven years and I hate not having you in my life. Even though my family have told me time and again that you are not worth my effort or love or trust.
You’re not a nice person. I hope someday you realize it, and feel bad.
My name is Ali, though sometimes it's Eliot.
I have many tumblrs, which you are welcome to also visit:
The Polite Yeti - My personal tumblr, full of silliness.
Fuck Yeah, Kate Miller-Heidke - the only active Kate fan site, which is baffling.
The Branden Rose - the only active Monster Blood Tattoo fansite, which is less baffling.
I also have a semi-successful etsy shop, which you should visit, below.
Please buy things from me:
A brief history:
