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Autistics Speaking Day 2018: Autism 101
I did a talk, and the second time I gave this talk, it was recorded. (Well, most of it. The last couple of minutes of Q&A were dropped because the first five minutes was spent swearing over getting the slides working. But that first five minutes has been cut, so it's straight into the talk.)
It's called Autism 101, and seems to have been well received.
It turns out that advocacy is hard, especially if you have a condition which affects communication with Neurotypical people, because about 90% of advocacy is in convincing NTs to help. And, of course, it is difficult to convince people to help with a condition which affects communication if you have a condition which affects communication, because Irony is a universal law alongside Gravity and Stupidity.
And it's especially hard when the responses are mostly along the lines of "That's great, that's awesome, that's a really good project, you're doing great stuff here, but you can't have what you're asking for." It's navigating a labyrinth, where most of the paths lead to dead ends, but the very act of getting there has made other paths unavailable. No, really, the movie Labyrinth is a very good analogy for it. The first trick is finding a way to even get into the labyrinth, and then you have to find out how to progress from the outer ring, and then it's dead ends and changing paths and oubliettes and goblins and people who may be helping and may be sending you on a wild goose chase, and you can never tell which. It's exhausting.
But I keep doing it because I can, on behalf of the ones who can't, so that they don't have to. Thus all the hard work and fighting for each small win. A talk at a conference, which turns out to be popular. Eventually, soon, a website to tell autistic students how better to deal with being autistic students and their teachers and peers how to deal with them. And eventually, I'm hoping to make that website include information for staff on the spectrum. And then for people who think they might be on the spectrum (because if you are on the spectrum but don't know it, then you will feel not included by information stated to be for autistic people because you don't know whether it applies to you or not and don't want to assume, even though that exact feeling is in itself a sign that it probably does apply to you and did I mention Irony as a universal force?). And for parents who think they have autistic children and don't know what to do about it (and don't know where to go for help, and might wonder what's so bad about Autism Speaks anyway).
And eventually (maybe sooner than I dared hope) there will be quiet spaces on campus marked on the map (for those who know to look). There will be quiet rooms set aside for the use of autistic people, to recover a spoon or two between classes. There will be not just information, but assistance, and advocacy, and maybe even community between the autistic members of the university community, and beyond.
This isn't all me, by any stretch. I have a co-conspirator, who is also on the spectrum, and is also pushing and talking to people and making contacts and running at the limits of her spoons, and she has achieved more than I would have been able to alone. Still, it's basically just the two of us doing this (and both of us have actual jobs that we're doing at the same time). But we're pushing through, as best we can. And if we're successful we will know it because then it will not just be us two anymore.
Because this is needed. I have personally met people who are worried about their children and didn't know how to help them. Who are autistic and in the closet, whether they're passing and successful or being bullied and are struggling. Who don't even know they're on the Spectrum, and privately worry about why they're different and why they can never let those difference be seen. These aren't hypotheticals, these are real people, and they all deserve better.
Autistic people who are struggling need assistance, and, because Irony, they need help to even ask for that assistance.
Autistic people who have been passing and successful deserve to be able to own their autism and wear it with pride. And that's not just for them, because autistic people generally need to see people who are autistic and succeeding. We need role models. Because so far the only autistic people most people see are on the media, and they are almost universally freaks, jokes, or both. We need people to see us as people, and, because Irony, those of us who have succeeded have typically done so because the first thing that they learned was how to hide it. The picture of autism is of failure because success is invisibility. The autistic people who are struggling need to be able to see that it doesn't have to be that way. That they don't have to be ashamed of who they are. And the parents of autistic children need to able to see that, despite what they may fear, it doesn't have to be a tragedy. That their children too can be proud of who they are.
It's called Autism 101, and seems to have been well received.
It turns out that advocacy is hard, especially if you have a condition which affects communication with Neurotypical people, because about 90% of advocacy is in convincing NTs to help. And, of course, it is difficult to convince people to help with a condition which affects communication if you have a condition which affects communication, because Irony is a universal law alongside Gravity and Stupidity.
And it's especially hard when the responses are mostly along the lines of "That's great, that's awesome, that's a really good project, you're doing great stuff here, but you can't have what you're asking for." It's navigating a labyrinth, where most of the paths lead to dead ends, but the very act of getting there has made other paths unavailable. No, really, the movie Labyrinth is a very good analogy for it. The first trick is finding a way to even get into the labyrinth, and then you have to find out how to progress from the outer ring, and then it's dead ends and changing paths and oubliettes and goblins and people who may be helping and may be sending you on a wild goose chase, and you can never tell which. It's exhausting.
But I keep doing it because I can, on behalf of the ones who can't, so that they don't have to. Thus all the hard work and fighting for each small win. A talk at a conference, which turns out to be popular. Eventually, soon, a website to tell autistic students how better to deal with being autistic students and their teachers and peers how to deal with them. And eventually, I'm hoping to make that website include information for staff on the spectrum. And then for people who think they might be on the spectrum (because if you are on the spectrum but don't know it, then you will feel not included by information stated to be for autistic people because you don't know whether it applies to you or not and don't want to assume, even though that exact feeling is in itself a sign that it probably does apply to you and did I mention Irony as a universal force?). And for parents who think they have autistic children and don't know what to do about it (and don't know where to go for help, and might wonder what's so bad about Autism Speaks anyway).
And eventually (maybe sooner than I dared hope) there will be quiet spaces on campus marked on the map (for those who know to look). There will be quiet rooms set aside for the use of autistic people, to recover a spoon or two between classes. There will be not just information, but assistance, and advocacy, and maybe even community between the autistic members of the university community, and beyond.
This isn't all me, by any stretch. I have a co-conspirator, who is also on the spectrum, and is also pushing and talking to people and making contacts and running at the limits of her spoons, and she has achieved more than I would have been able to alone. Still, it's basically just the two of us doing this (and both of us have actual jobs that we're doing at the same time). But we're pushing through, as best we can. And if we're successful we will know it because then it will not just be us two anymore.
Because this is needed. I have personally met people who are worried about their children and didn't know how to help them. Who are autistic and in the closet, whether they're passing and successful or being bullied and are struggling. Who don't even know they're on the Spectrum, and privately worry about why they're different and why they can never let those difference be seen. These aren't hypotheticals, these are real people, and they all deserve better.
Autistic people who are struggling need assistance, and, because Irony, they need help to even ask for that assistance.
Autistic people who have been passing and successful deserve to be able to own their autism and wear it with pride. And that's not just for them, because autistic people generally need to see people who are autistic and succeeding. We need role models. Because so far the only autistic people most people see are on the media, and they are almost universally freaks, jokes, or both. We need people to see us as people, and, because Irony, those of us who have succeeded have typically done so because the first thing that they learned was how to hide it. The picture of autism is of failure because success is invisibility. The autistic people who are struggling need to be able to see that it doesn't have to be that way. That they don't have to be ashamed of who they are. And the parents of autistic children need to able to see that, despite what they may fear, it doesn't have to be a tragedy. That their children too can be proud of who they are.
Thoughts
You are awesome. \o/
>>"That's great, that's awesome, that's a really good project, you're doing great stuff here, but you can't have what you're asking for."<<
Because ...
* they think you're bad for even wanting/needing the thing.
* it would be a nuisance to them and they don't want to do it and won't be rewarded for doing it or penalized for not doing it.
* they are willing but have no money to do it.
* they are willing and have resources, but no power to do the thing.
These all have very different solutions.
>> And eventually, I'm hoping to make that website include information for staff on the spectrum. <<
We need resources for neurovariant staff so we can have more neurovariant staff. Unless people hire them, nobody growing up will believe they can do anything because they can't see any examples of it. >_<
>> And then for people who think they might be on the spectrum (because if you are on the spectrum but don't know it, then you will feel not included by information stated to be for autistic people because you don't know whether it applies to you or not and don't want to assume, even though that exact feeling is in itself a sign that it probably does apply to you and did I mention Irony as a universal force?). <<
I would say, focus on traits and experiences rather than diagnostics. It doesn't matter if someone in a white coat gave you permission to have a problem. It matters if you hate being touched, don't like eye contact, find smalltalk painfully boring, nobody cares about YOUR passion, etc. and you need advice on coping with that from people who have successfully coped with it in different ways. That resource would be useful to everyone regardless of their documented mental status.
>> And for parents who think they have autistic children and don't know what to do about it (and don't know where to go for help, and might wonder what's so bad about Autism Speaks anyway). <<
The first thing I tell people who want to do a thing is talk to those who have done it. You want to parent autistic kids? Talk to parents whose adult kids are now healthy and happy. Then figure out what they did and pick out what of that will work for you. For comparison, look at people who had shitty childhoods and DON'T do that stuff.
Something else that would be super useful: "I wish I had known then" notes from older people about what would have helped them growing up.
I get lost very easily. It drove me and my parents nuts when I was little. We never did think of using a safety line. I wish we had, it would've saved us a lot of headaches. It's not a dog harness. It's a safety line, literally like climbers use in case of a snowstorm. Some people might hate it, but for others, it's a perfect solution. A GPS would drive me batshit (and also die almost immediately) but other folks seem to love those things. The site needs to list problems and multiple solutions.
>> And eventually (maybe sooner than I dared hope) there will be quiet spaces on campus marked on the map (for those who know to look). <<
Everyone needs quiet spaces. Some people just need them more often than others. Look around at the noisy, awful world we've built and how many people have physical or mental stress conditions. We need to counteract that before everyone keels over. If you want to spread them, explain how they are useful to everyone: a place to go when you have a breakup, flunk a major test, hear of a death in the family, have just been groped, etc.
I've written a lot about this kind of stuff. If you need content for a website, ask me, I'm usually happy to have it reprinted. Here's one on EFA for adults and quiet rooms.
Know anyone who writes apps? Ask them to make some for quiet rooms. One good option is a mapper that shows the location of known quiet rooms and/or will trace a route from where you are to the nearest one(s). Another is a photo log so you can take a snapshot of the building, the quiet room door, the interior, etc. A feature tracker lets you can write in what it has like couches, fidgets, a white noise generator, a bubble wall, etc. They're all different so this bit is important.
You really want to spread quiet rooms on campus? Start a club. Student clubs often have leverage. Call it a mental wellness club, teach emotional first aid and self-care skills, and lobby for quiet rooms. You can make one out of a walk-in closet, there's space for it in most buildings. Advertise with things like, "Do you know how to deal with a crying friend? If not, come to our workshop on Crying Skills!" When you teach people in general how to handle challenges, there's more likely to be someone who knows what to do when the shit hits the fan.
Oh, and when it's so bad the neurotypicals are melting down? Autistics are used to it. They know how to identify it. They know how to cope with it. They can explain these things to a roomful of coworkers who have no clue why their head is exploding. I've had friends do this and talk about it. It's important. We need the skills and the diversity, so people can back each other up.
>>And that's not just for them, because autistic people generally need to see people who are autistic and succeeding. We need role models. Because so far the only autistic people most people see are on the media, and they are almost universally freaks, jokes, or both. We need people to see us as people, and, because Irony, those of us who have succeeded have typically done so because the first thing that they learned was how to hide it. <<
Crowdfunding can help with that. Anyone can hop on a prompt call and ask for autistic representation. Mine are scattered around, but I have one setting that's mostly neurovariant of assorted flavors: An Army of One. Lots of my neurovariant fans have prompted for that.
So look for other writers or artists who are crowdfunding and ask them for stuff. Look for autistic folks who are making things and spread the word so people can support them. "There's no good X" is a problem that can be solved by making good X.
I never have the patience to wait for society to work through the whole literary development process. I just skip from "oh look, a trait I haven't written before" to "put trait in protagonist." This can be challenging if all the published data is rubbish, but if one can find trait-having people, this is easily corrected. Just having a good list of horse's mouth resources can really help progress by reaching out to creative folks who want to get it right.
Good luck with it.
Re: Thoughts
Oh, I know. The trick is knowing which is which in any given situation. Each is their own special sort of dead end in the labyrinth. And I think I have run into all of them.
That's exactly what we've been doing. Describing traits, providing their names, and describing what they are not. (Mutism is not aphasia. I've had both, I know. Special Interests are not perseverations, nor are they savant skills. Meltdowns are not tantrums. etc.)
Part of the deal is to lay all this out, and say that "if this all sounds like I've got cameras in your house, consider looking into diagnosis, but see this other section about the pros and cons of making a diagnosis official."
That is also part of the deal. This is a guide written for autistic people, by autistic people. And we go out of our way to provide practical tips. Note that the site is, at this point, strongly targeted at uni students, so that's where the advice is going. Tips like "check out the campus before the start of classes, so you can get the lay of the land in a less stressful environment" and "however you travel to campus, try and plan time to sit and compose yourself before class, if you can". Links to available resources, so you don't have to go through several years without access to a resource that you could have had from day one had you known to ask, which of course you didn't and no-one else knew to tell you.
The Quiet Spaces list is going to be basically an overlay on the online map which can be accessed with a simple query. It won't be locked off to anyone who goes looking for it. (And most of those spaces are just this corner behind that building, or this section of library, or this corridor where no-one ever goes. This function will include notes and photos.
We're also in talks to have specific Autistic spaces, which are a lot like the quiet rooms you describe (only also set up with network access and power points). In these cases, we're worried about the tragedy of the commons, where NTs find that these rooms are perfect for studying, because they basically are, and monopolise them, so that autistic students can't get near them, or have to exert more spoons in kicking out abusers than they'd recover in them. These I think of more like disabled parking spots. Yes, everyone would love to use them, but they don't have to. We need them to function.
Honestly, I thought this bit was going to be the hardest, but it seems to almost want to happen.
1) This isn't just about students. There is bugger all active support for autistic and other disabled students, but at least there's some. There is none whatsoever for disabled staff, and that can't be allowed to stand.
Moreover, 2) if there is a club of some kind, that's an invitation for the Chancellory to a) ignore the problem because "the club will look after it", and b) to trivialise the problem as something that can be dealt with by a club, rather than by some level of institutional change and systematic supports being put in place.
That sounds like a route to "Self-narrating zoo exhibit on call", rather than "You know the guy who runs that department? You know he's autistic, right?" What I'm trying to achieve is that the successful autists who are already out there don't have to hide it.
Re: Thoughts
Sometimes they'll tell you, which makes it easy. This works most often with money and power issues. "That's a great idea, but there is no money for it" tells you to examine finances for ways to fix it. "I'd love to help, but I don't have authority over that decision" means find out who does or find a way to put authority in the hands of someone helpful. Very handy for elected positions.
Otherwise, you have to triangulate. Someone who repeatedly says disparaging things about neurovariant folks is probably a bigot. You may just have to treat them as a rock problem and look for ways around. Someone who keeps saying "I don't know" is more likely ignorant, which is something that information can fix.
>>That's exactly what we've been doing. Describing traits, providing their names, and describing what they are not.<<
That sounds fantastic. Is it up yet, and if so, open to the public? I have a list of autism resources.
>>Note that the site is, at this point, strongly targeted at uni students, so that's where the advice is going.<<
Start where you are, use what you have, do what you can. If you start with uni students, 5 years or so later they'll be job hunters, workers, and young parents. It's a natural route of expansion, if you can encourage regular users to submit content.
>>The Quiet Spaces list is going to be basically an overlay on the online map which can be accessed with a simple query. It won't be locked off to anyone who goes looking for it. (And most of those spaces are just this corner behind that building, or this section of library, or this corridor where no-one ever goes. This function will include notes and photos.<<
*chuckle* My college had a word-of-mouth network among the freaks and geeks crowd to show freshmen where the best hiding places were. It was a big enough school there were lots of low-traffic nooks and crannies. There was a whole pocket garden almost nobody ever went to, and a tunnel between libraries with vending machines and tables. Having a searchable database would be awesome though.
>> We're also in talks to have specific Autistic spaces, which are a lot like the quiet rooms you describe (only also set up with network access and power points). <<
Different types of quiet rooms do have different needs. The reason I separated some in my list is because if you don't, everyone tries to pile into the same place and annoy the hell out of each other. Frex, when some people say "quiet room" they literally mean QUIET -- a room with sound baffles. (You can make these cheaply from egg-crate foam.) But other people mean a room that uses soft sounds (e.g. white noise generator, aquarium, fan) to cover outside sounds. Autistic people are way pickier than average about that, because one might help while the other makes it worse. If you don't have both options, they'll fight.
The best approach I've found is to have people design their quiet room together, discussing what they want and why. If needs diverge, first try to make the components customizable, and if that doesn't work, diverge the crowd into separate rooms.
>> In these cases, we're worried about the tragedy of the commons, where NTs find that these rooms are perfect for studying, because they basically are, and monopolise them, so that autistic students can't get near them, or have to exert more spoons in kicking out abusers than they'd recover in them. These I think of more like disabled parking spots. Yes, everyone would love to use them, but they don't have to. We need them to function. <<
One option is to have the quiet rooms, or at least some of them, for members only. That's where a club comes in handy, although I acknowledge your objections to that format. You'll have to decide which priorities are more important to you. Another option would be private property. Could autistic students chip in and rent an apartment or an office or a storefront? Look around for empty spaces. If you're paying for it, you get to say who can use it or not.
Another option is to spread out the impact over a wide area. The more quiet rooms you have, the more good study spaces, etc. the easier it is to diverge them and the less people will step on each other.
Many people do absolutely need quiet rooms. Autistics need to not melt down. Nursing mothers need to breastfeed or express milk. Muslims need to pray. People with various health complaints need to lie down. Ordinary people who are approaching overload need a place to depressurize before they explode. It is to everyone's advantage to establish enough spaces and suitable features to meet those needs. By all means, focus first on autistic safe spaces. But don't lose sight of how depressurizing other people helps you: it makes them less likely to blow up in your face, which makes campus safer for folks who don't handle social stress well.
All students need comfortable places to study. Some of them need vibrant ones like a coffeehouse. Most seem to prefer quiet ones like libraries. For a group project, they'll need small meeting rooms. Some campuses are much better equipped with these features than others. If yours is, map them and distinguish by features. ("Need a place to study silently? Go here. Need a place to work on small-group projects? These are bookable rooms. Need a place to relax before you explode? Here they are. Need a private place with a sink to attend medical or lactation needs? There are two.") Because you're right, if there aren't enough study rooms and you make quiet rooms, you might get mobbed.
Another solution: make some of them portable. I've taught people how to make quiet tents for eventing. You need a tent or portable screen, a chair, a fuzzy blanket, and some pillows. It won't close out all the sound but muffles it a bit and gives visual privacy. In a crowded place, that helps a lot. Because it's portable, you can move it whenever you wish and tell only the autistic folks the new location. You know, like moving the sugar dish when the ants find it.
>>There is none whatsoever for disabled staff, and that can't be allowed to stand. <<
You have certainly identified some drawbacks of the club approach.
For this point, however, try the teacher's unions. There's a National Education Association plus one for each state. The whole point to unions is to get workers stuff they need to work safely and effectively. So for disabled staff, first check if their workplace is unionized. If so, talk to the union rep about making accommodations. Bear in mind that numbers matter: if there are only two autistic teachers, they're less likely to gain a quiet room than if they band together with the one who's breastfeeding and the two with migraines. You'll have to count heads and bet whether you have enough to get your own room or need to share. If the place isn't unionized, consider starting one. It's another option besides the ADA and if you can go wall-to-wall, a union has teeth that the administration can't easily ignore. They can still screw you, but they have to work a lot harder.
Then again, staff have advantages that students don't: territory. Most campuses give people an office. Departments may have a wing or a building. They already have space. It's just a matter of allocation. Look at what you have. I've known teachers who had a two-room office, or a walk-in closet, or a cluster with an empty room used as random storage space. Are any of the autistic folks in positions of authority (e.g. professors, department heads) on campus? If so, those people tend to hold larger territories. Use what you have. Clean out the crap room and declare it a quiet room by fiat. If you don't already have such a space, find out what you need to get one. All campuses have to have a system for staff to claim space, temporarily or permanently. Find out the magic phrases your campus wants and use them. Call it an evening meditation group if that's what it takes to bag a room from 6-10 PM on weeknights.
Staff also have better access to grants. Got anyone good at writing applications? Money can solve a lot of problems, and there are some programs to pay for disability accommodations. Autism counts.
>> That sounds like a route to "Self-narrating zoo exhibit on call", rather than "You know the guy who runs that department? You know he's autistic, right?" <<
I can see why that connection would come up. If it doesn't appeal, nobody has to do it. It's just a solution that some folks have found useful in solving the "nobody writes good things about us" problem.
However, the positive version of "self-narrating zoo" is actually the flip side of what I described. Most writers have a "pool" or "stable" of consultants on different topics they can ask when writing about something. One of my fans knows nuclear physics, one's a biochemist, several are computer programmers, several have chronic pain, a bunch are various kinds of neurovariant, and so on. If I need to know something I can't find online, I can ask my fans and usually get a good answer. This is a good way to solve the problem of nobody writing accurate things about you.
A prompt call is when a creative person puts themselves up to make whatever people want. There are free-for-all ones in addition to individual ones, too. Sometimes people tell very personal stories; other times they ask for generalities. It's common for my fans to ask me for real-life fixits: "I got shafted (description) so can you write a scene where that gets handled better?" Sure, no problem, here's your thingie. I literally call my project a Poetry Fishbowl because "fishbowl" is the name of an exercise where one or two people sit in the middle while other folks sit around and kibbitz. (Fun for me, but the middle position is not recommended for most autistics.) So it's a way for people to get types of material the mainstream is just not interested in furnishing. Look at the caliber of mainstream portrayals of autism and you can see why an alternative may be desirable.
>> What I'm trying to achieve is that the successful autists who are already out there don't have to hide it. <<
I agree, this is an excellent goal.
Many other identity groups have found it useful to showcase successful people. After several decades of this work, it's no longer huge news when someone announces that they're queer. A website has the enhanced feature that when you showcase an autistic professional, you can link right to their business site so people can shop there or whatever.
This is somewhat hampered by the fact that many autistic people prefer to avoid attention. But so did queers, once, and that's changing as the environment gets saner. For some autistics it may be hiredwired, but I think a lot of the so-called "antisocial" aspect is just not wanting to be around people who hurt them or demand they they hurt themselves. In a more positive environment, at least some autistics are a lot more sociable -- proven by the dramatic change in gregariousness if you put a bunch of them in a convention where they get to set the expectations.
Fiddle around with it and see what ways you can find to promote awareness of successful autistics and what kinds of jobs are a good bet. There's more than computer programming out there.
no subject
Sounds a lot like the irony of advocating for people with ME/CFS. Including advocating for myself. Brain fog is dismissed because I either withdraw and go quiet, or I'm articulate so couldn't possibly have it (and my non-sequitors are ignored because polite people don't say anything, just smile and nod).
Sensory overload seems to be better understood these days - I suspect that increased awareness of the needs of autistic people has helped us.
The other thing about people "passing" is that "passing" can take so much effort that people can't just get on with their lives. People shouldn't have to "pass".