The Alternate Lexicon
Currently viewing the tag: "neurodiversity"
There’s been a fair amount of discussion of the new/proposed autism criteria around the web, and particularly on tumblr. I’m glad we’re finally talking about them, since my original opinion on them was that they were fine. Not great, not terrible, probably not going to exclude anyone, and just sort of…meh.
A few people on tumblr have rightfully pointed out that the criteria are actually moving even further away from the lived experience of autism towards useless constructs of what autistic behaviour does/should look like according to allistic researchers. This is hugely problematic, if for no other reason than it’s scientifically unsound. Accordingly, I’ve been thinking about what I would prefer criteria to look like. This is what I have so far. All constructive criticism and commentary is very much welcome, since I think that the diagnostic criteria for autism should be autistic-defined as a broad group–we’re effectively deciding who gets to be in our group with us.
Apologies for the wonky formatting. WordPress was not happy with my beautiful tiered bullets.
A. Differences in perception (at least 3)
1. Sensory defensiveness (ie, complaints or avoidance of any of the following: loud noises or places, bright lights, textures (food or object/clothing), tastes, smells, touch)
2. Sensory seeking (ie, stims or stimming behaviour such as rocking, flapping, finger flicking, hair twirling, spinning objects, etc or actively desiring any of the following: deep pressure or touch, vestibular sensation [swings, spinning in any context, etc], specific smells, tastes, or textures)
3. Auditory processing difficulties
4. Unusual, awkward, or delayed motor skills, or asymmetry between gross and fine motor skills (ie, clumsy but with strong fine motor skills, good gross motor skills with poor hand-writing or table skills)
5. A reduced or lack of conscious awareness and/or use of allistic (not autistic) nonverbal behaviour and communication such as facial expression, gesture, and posture.
This criterion should not exclude persons who have learnt to read or otherwise comprehend nonverbal behaviour by rote learning, particularly adults. Intentional learning to overcome an inherent difficulty in comprehension is supportive of this criterion. It should also not exclude persons who have been taught to use nonverbals to be less visibly different. In such cases, internal report of difficulty should take precedence over apparent behaviour.
B. Differences in cognition (at least 3, one of which must be 1 or 2)
1. Difficulty in beginning or ending (at least 1):
-Perseverative thoughts or behaviours
-Needing prompts (visual, verbal, hand-over-hand, etc) to begin or finish a task
-Difficulties planning complex activities
-Catatonia
-Difficulty switching between activities
-Lack of apparent startle response
2. Difficulty in using language (at least 1):
-Problems with pronoun use that are developmentally inappropriate
-A reduced or lack of awareness of tone in self (ie, speaks in a monotone, childish, or otherwise unusual manner) and/or others (ie, does not perceive sarcasm or follow implied prompts, responds to rhetorical statements and questions in earnest)
-A reduced or lack of awareness of volume (ie, speaks too loud or too quietly for the situation)
-No functional language use
-Echolalia
-Mutism in some or all situations
3. At least one special interest in a topic that is unusual for any combination of intensity (ie, does not want to learn/talk about anything else, collects all information about the topic) or subject matter (ie, unusual, obscure, or not considered age appropriate). Topics may be age appropriate and/or common (such as a popular television show or book), but the intensity of interest and/or specific behaviour (such as collecting or organising information as the primary focus) should be taken into account.
4. Asymmetry of cognitive skills
5. Talents in pattern recognition, including music, mathematics, specific language structures, puzzles, and art.
6. A tendency to focus on details instead of the broader picture, across contexts.
C. These differences cause impairment and/or distress in at least one context (ie, school, work, home), which may be variable over time.
D. Symptoms should be present in early childhood, but may not be noticable until social demands outpace compensatory skills, at any age
In two and a half weeks, I will get on a plane and cease to live in the US, for permanent as far as we can guess.
When I land, I will be a new person. I will be neatly crafted, all smooth lines and invisible joins, not cobbled together of hurts and fears and sinew like I am now. A clockwork person; a robot made out of human bits of bone.
I will be Eliot, sometimes. I will be trans without being ashamed, or anxious, or both. I will be openly, joyfully queer (and if the immigration stuff goes easily, maybe even poly). I will be proudly autistic, honest about the disabling bits and all the good things. I will be clever and quick and funny and obsessive. I will make friends.
At least, I’m going to try.
I am still.
When I was six or seven, my mother told me that flapping my hands was Not Okay. It’s something my cousin did, full of exuberance and ADHD, and it was made clear to me that I was Too Smart For That. He was stupid, no one expected much of him, so if he wanted to flap his hands, it was fine. But I was bright, so clever and sharp, and I should not do those things. People would get the wrong idea.
I became still.
I sit like a small animal, surrounded by predators, every muscle tensing and untensing. If only I could go unnoticed! I wait for the threat to pass, and it never does, because it’s a threat built into the foundations of my culture. Sometimes I let myself flap, or bite my nails, or wiggle with joy, but only after I have given up hope of passing, of being overlooked in my stillness. I think this is the outcome of a life of being instructed not to be exemplary in any fashion. Worse, it incapacitates me in my desire to no longer be still. I don’t actually care what anyone thinks of me anymore. I don’t care if they think I’m stupid, or if it annoys them. I want to feel comfortable in my skin.
Instead, I stay still.
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.
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.
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.
Please buy things from me:
