Catsidhe

(Self-)Advocacy is hard, because it doesn't feel, most of the time, like a disability.

That needs unpacking.

The advocacy work I'm trying to do has a lot of overlap with advocacy for wider disability inclusion and accessibility. If I'm successful, it's not just for the neurodiverse, it's for the vision impaired, the mobility impaired, the hearing impaired, everyone. It requires making common cause with them, and at least at the start, advocating on their collective behalf (because somebody has to, and if anyone else is, no-one seems to know about it). But I don't feel like I belong in the same category as they do.

Because what is "disability"? It seems that every attempt at defining it comes out different, and the only commonality is that it's like "obscenity": you know it when you see it.

At the core, it's a condition which results in a more or less permanent impairment in function. But that carries its own definitional problems. A family with achondroplasic dwarfism, in their own specially designed environment, might not notice any particular issue. Until they step outside into a world designed for "normal" people. Or, as the terminology is preferred, "typical" people, because we're talking about mathematical norms over populations. So the first battle is to define your population. If you had a modern environment designed for Maasai, and a !Kung family moved in, would they count as disabled because of their physical difficulties? Or vice versa?

Let's take it further: Dwarfism isn't just caused by achondroplasia, and there are so many possible causes, including just because, that the definition for dwarfism as regards being a disability is being 4'10" or less as a fully grown adult. But it's possible for treatments of conditions like achondroplasia mean that growth can be given a kick along. It's entirely possible to be a 5'5" dwarf. Are they still disabled?

Then there's where the line is drawn regarding severity: someone with a C5 spinal cord break is quadriplegic, and everyone would agree that they're disabled. Someone with an L4 break is paraplegic and also definitely disabled. Someone with a below the knee amputation is definitely disabled, even if, like Adam Hills, you wouldn't usually even know unless they told you. I just discovered that I have a slight congenital deformity of the talus bone in my ankle, which results in a twist in the foot, which results in chronic tendonitis and achilles tendon pain, and I've just got orthotics to address. Does that count as a disability?

Then there's where the line is drawn regarding permanence. The flu is clearly not a disability, no matter how much medical care you might need to live until it passes. The paralysis which results from polio clearly is a disability, as is the results of post-polio syndrome decades after any recovery. A broken leg is an injury, not a disability. The results of many broken bones can add up to a disability, such as for someone with osteogenesis imperfecta.

Where am I going with this? Executive summary: the concept of "disability" isn't that easy to define.

And I don't feel disabled. Usually.

How I am is how I've always been. In the normal course of events I am just how I am.

Normally.

And then a tradesman comes out for an emergency visit, and it turns out I have absolutely no idea how to even ask how to pay him, or how much. Or when the conversations around my corner of the open plan office all talking over the top of each other penetrates even the music playing through noise cancelling headphones and I have to grit my teeth and fight the urge to stand up and scream at them to shut up.

But still, I have been diagnosed as on the Autism Spectrum. And the fact of that diagnosis means that, by definition, my symptoms add up to clinically significant impairments. I am, by definition, disabled. But putting myself into the same company as someone who uses a wheelchair or is blind, feels like a form of fraud.

And that's the same wedge that some Autism parents use to divide "high functioning" and "low functioning" autists. "You're not disabled, not like my child. You'll never understand what it's like for my child. Don't you dare to try to speak for my child."

Never mind that if you child can't tell you what it's like from their point of view, maybe people like me can. Never mind that there is no dividing line between "high" and "low" functioning, and that it's a grossly oversimplistic binary division of a complex and continually varying context dependent spread of capabilities and deficits. How about you let me advocate for me, and for people like me. How about you stop cutting my legs out from under me by shouting out my own private doubts, as if I hadn't been obsessing over them to an extent which practically of itself proves them false, as if I hadn't thought of any of them, as if the answer was as simply and easily expressed as the question.

Advocacy is by its definition the act of asking for help. Help for yourself and for others. (And that latter part means that there's more than my own wellbeing at stake if I stop.) And part of the very definition of the condition I'm asking for help with is that I don't know how to ask for help. Certainly not from the people I need to convince to provide it.

Christ, I can't even get some of them to answer my emails.

But I'm sure as hell not going to stop. Because, as I keep reminding myself, I'm doing this because I can, so that the next poor bastard doesn't have to.

It's just that I don't feel like I belong in the group for whom I'm doing it.

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.

On Autism and the sensation of Time.

November 1 keeps catching me by surprise. Every year. Every Autistics Speaking day.

Sometimes I wonder what it would be like to have an accurate sense of time: to remember an event and Just Know how long ago it was, to see an event in the calendar and Just Know how long I have to wait. But I don't. I have five times into which all events are sorted: there is the Now. There is the Recent Past and the Near Future... maybe up to 24 hours in either direction. And then there's the Past, and the Future. And within those two groups, there is no ordering. If something happened a week ago, or twenty years ago, it feels the same to me. If something is scheduled for Thursday, or for April, the urgency is the same to me.

As you can imagine, this doesn't help with things. If something was more than a couple of days ago, I don't remember if I've done it or not. The death of my father's father in 1993 feels as immediate and painful as the death of my mother's father in 2009. For any event which has happened, I must consciously remember context to put things in order: This person was at that event, so it must have been while I was working there. That narrows it down to five years or so... now I have to look up which years those were...

Because all events in the future are the same, it makes planning a bastard. All tasks are due In The Future, so the one which is due in two days feels like the one due in a month. So when I look at a list of things which need doing, I don't see a list, I see a heap: I cannot pick which one needs to be done first, because they all feel like they need to be done first. And when I need to do something, either I do it Now, or I look up and see that I have been saying "I'll do it tomorrow" for a week, and the week before that, and the week before that, and... it's been months. Bugger: I'd better do it tomorrow, then.

Would you believe this affected language learning? D'accord, mes enfants: Quelle heure est-il? And the teacher would wave a clock at us with the hands set just so. I still, at almost 43 years old, have to stop and consciously figure out a dial clock from first principles, every time. So then, I would still be trying to figure out which one was the hour hand when even the slowest other student had thrust their hands up: C'est huit heures quinze, madame! (That I couldn't process anyone's speech as quickly as anyone else didn't help either.) So, for years, I thought I was bad at languages.

I saw an episode of Bones once, where a character described himself as "dyslexic for time", which description struck through me.

Depression is not helped by this. Because all I can put into somatic context is the immediate Now, then I cannot remember not being anxious or depressed. I know it must have been different at some point, but I am currently full of fear and anxiety, and it may as well always have been thus, and might as well always be.


If it weren't for the last minute, nothing would get done. I just wish that every minute weren't the last minute.

Overload is a feature of autism, to the point were I would talk about how my autism interacts with my circumstance, but there is so much going on that I find myself unable to extract any particular thing to discuss: the forest is so big, I can't describe any trees.

So instead of talking about that, let me talk about television.

There are autists on TV, even if their attributes are usually inconsistent and subject to plausible deniability by the show's writers. That is: it doesn't matter how obvious that the traits are, the writers will deny that the character is anything of the sort. Presumably so that they can explain away any mistakes they make.

Still, there is Sheldon Cooper, and Temperance Brennan, and Data, and (I'm told) Abed Nadir.

Characters in historical features, however, are more difficult to nail down. Not least because the assumption seems to be that, in accordance with Age of Autism dogma, there weren't any autists before the 20th century.

Which is, of course, ridiculous.

Historical autists who could feign normality, or were in circumstances where they could function, were just folks who were odd. Autists who could not function were "idiots", and typically ignored in the records. If they lived that long.

There's a good argument that Fitzwilliam Darcy was on the spectrum, given how he was described as acting stiffly and formally, and abnormally so even by the standards of the time, but hiding behind his demeanour a rare kindness and sensitivity.

Sherlock Holmes, for different reasons, as well.

But as far as it goes, that would seem to be that, unless you include the archetypal absent-minded professor. And even that is typically a trope in its own right, and with only tangential connection to autistic traits as is typically presented.

And then there is Miss Fisher's Murder Mysteries, series 2, episode 8: "The Blood of Juana the Mad".

Spoilers and potential triggers ahead

Beatrice Mason is a student of medicine in the 1920s. When we first see her, she is not the only female in the class — indeed, the teacher of the dissection class is a woman — but the three women present are outnumbered by the men. When the sheet is pulled from the cadaver, supposed to be a woman in her thirties, and it is revealed to be an older man with a slit throat, Beatrice is the one who names him as Professor Katz. Her expression is one of surprise, rather than shock or despair.

Later we see the investigation enter Professor Katz' office, and it turns out that Beatrice was his research assistant. She gets distressed that strange people are invading the office. She gets even more distressed when a valuable mediaeval manuscript is missing from the safe.

Her reaction is to rush out to the empty corridor, and rest her forehead against a pillar. When Phryne (the heroine of the series) goes out, Beatrice says that she finds groups of people difficult to be around.

Later, when Beatrice is questioned, she reveals that she effectively lives in her office after she was kicked out of her rooming house after she was blamed for a fire. As a woman, she wasn't allowed to live in any of the residential colleges. She is very matter of fact about this.

Later we learn other things about Beatrice. She may not show it, but she says that she is sad that Professor Katz is gone. She only eats jam sandwiches. She hates it when people touch her books without gloves. When she says in response to an offer of a place to stay, that she "will consider it", she means exactly that, it's not a euphemism for "no". She looks distracted, but while looking around she picks up important details as quickly as does Phryne herself.

And she provides the vital clues to solving the mystery when not only has she transcribed the missing manuscript, not only had she found the hidden code, but when her transcription was stolen, it turns out that she had made separate transcriptions of the code alone.

Her difficulties are not played down: she is drugged because someone gives her a jar of spiked jam. She is lured to a boy's room by simply being invited. "It was polite to go. It's important to be polite." She is constantly being insulted, teased and excluded, and appears unaware, although she does describe knowing full well what's going on. Mostly.

Never once is the word "autism" uttered. It would be an anachronism if it were: Kanner's paper was still twenty years in the future. And yet, for those who know what they're looking at, there can be no question that that's what she is. It's not a tragedy, it's not played for laughs, it's not a source of superhuman powers, and it's not a quirk without consequence.

It's possible for the depiction of autism on television to be done right.

Bones, season 8 episode 2: "The Partners in the Divorce"

Over the years Temperance Brennan's Asperger's (as near Word of God as we're likely to get [0]) has varied from subtle eccentricities to verging on caricature, but in the episode which showed here last night, "The Partners in the Divorce", they damn near nailed the core of the condition.

The plot is ostensibly about the investigation into the murder of a man whose body was found burning in a 44 gallon drum under a bridge. But that's incidental to the personal interactions going on. And the biggest one is between Booth and Brennan, dealing with recent events.

The context is that Brennan has just returned from three months on the run from the law, trying to clear her name after being framed for a murder. (She, of course, arranges for this to happen.) But in the meantime, she and Booth have been separated, and Booth has neither seen nor heard from Brennan or their baby, which Brennan took with her on the run.

When we first see them in this episode, Brennan is cooking breakfast, and we can see that Booth is trying to hide how upset he is. Brennan is cooking breakfast, usually Booth's job.

When they get to the crime scene, Booth is further upset when he steps in brain matter and his shoe is bagged as evidence, and snaps when Brennan starts giving orders relating to police procedure. He angrily starts giving orders relating to forensic procedures, and hops off. Brennan knows that he's upset, but has only the vaguest idea why.

As the case progresses, and they discover that they're investigating a Divorce Lawyer, she further upsets Booth (a Catholic) with her statements that marriages often end in divorce, and it's a good thing they aren't married.

Things get more and more tense, with Brennan aware that something is wrong, but unable to figure out what it is. When people hint at the reason, she rejects it as a stupid reason: she gives Booth the credit of being as logical as she is. But still, they are snapping at each other, both getting more and more upset at each other, and themselves.

The turning point is when Booth talks to Brennan in her lab, and they are calm and rational about things, they give each other a peck, and Booth leaves. Brennan is relieved that things are calming down (which is the interpretation I gave the interaction as well), until her intern asks what's wrong. When Brennan asks why, the intern says that whenever his parents are that polite to each other, it means things are about to explode.

And that's the moment when she realises that he could be pretending to be calm, and that she needs help to figure out what's going on.

Later that night she arrives home late. Booth is drinking. He asks her why she's late, primed to see something to get angry at, but this is defused when she says she was meeting with Sweets the psychologist, asking him for help to learn what she should do. And she says so with "There's something wrong with me."

That was what made the episode for me. It was the recognition that Aspies get into trouble because we can tell (sometimes) that someone's upset, but not be able to tell what they're upset at, and we get caught when someone else tells us that things are "fine", we can't tell that that's a lie. And when we realise what's going on, it's us with the malfunctioning systems. It's our fault that the other person's upset, because if we were better at being functioning human beings, we would have been able to tell that they were upset, and figured out at what, and known how to fix it.

It was the look on Brennan's face when she realised how little she knew about what was going on around her, and how close she was to everything unravelling around her, and her largely oblivious. Because that's a feeling I've had myself.

Is this what it's like to relate to a character on TV?



[0] http://www.nj.com/entertainment/tv/index.ssf/2010/02/how_tv_shows_try_or_choose_not.html:

"If we were on cable, we would have said from the beginning that Brennan has Asperger’s," Hanson says. "Instead, it being a network, we decided not to label a main character, for good or for bad. But those elements are in there."

Autistics Speaking Day 2011

Doubt

There are four learned men on a train travelling through Scotland. As they are looking out the window, they see a sheep.

"Ah," says the first man. "Sheep are white in Scotland."

"Some sheep are white in Scotland," corrects the second.

"At least one sheep in Scotland is white," adds the third.

"There exists in Scotland a sheep which is white on this side," says the fourth man, and returns to his book.

Autists tend, as a rule, to be like that fourth man. So when we are trying to distil what the "Austistic Experience" is like, we tend to qualify strongly: I don't know what the "Autistic Experience" is, because I don't know all Autists. Not even 'most' Autists by orders of magnitude. I know a couple of others, I suppose, but I wouldn't call that "many". And anyway, I don't know what their internal experience is. I am able to speak for exactly one Autist -- myself ... some of the time.

And Autists tend to take people at face value. It takes us effort to consider that someone might be lying, or that they might have an agenda which is distorting their evidence, or that they might, despite their air of assured confidence in their own correctness, simply be utterly wrong.

We doubt. But because of a lifetime of being the odd one out, of being the one quiet dissenter in what appears to be a sea of unanimity, we most of all doubt ourselves. There's always that niggling voice in the back of your head whispering "... or maybe it's just you."

Or maybe that's just me.

Combine that with Alexithymia: the inability to articulate -- even to yourself -- your own internal emotional state, and we find ourselves blown about in the breeze. Maybe that article which says that Autists are like psychopaths is true. Maybe all Autists are characterised by uncontrollable rages and incessant stimming. Maybe Autists really don't care about other people.

And yet... I have learned to control my rages, most of the time. I only stim when I'm stressed... so as I notice, anyway. I certainly think I care about others.

Maybe I don't cope as well as I think I do. Maybe I just think I care about others, but I don't really. I have logical reasons for why I want to be around my wife and my children, but I also have times where I want even them to just go away and leave me alone for a while. I don't know what "Love" is supposed to feel like; how do I know that I'm not just pretending to "love" them... even to myself?

Or else... maybe this is evidence that I'm not *really* Autistic. Maybe I'm just lazy and undisciplined and stupid, like I spent most of my life thinking I was. Maybe those people on the internet are right, and I am just inventing a condition to explain away my failings. Maybe I'm running away from my own broken self, instead of facing it and fixing it. Maybe if my experience of "love" is so different from how it's described, then I don't really-- No. I can't even finish that thought, not even hypothetically.

Is that evidence for or against the proposition? Which proposition?

It's really, really hard to put your own experience to the front, and have the strength of will to assert, even to yourself; "Maybe everyone else is wrong." Especially so when your entire life has been the experience of being the one who is the odd one out, whichever group you are in.

Assumption

“Before a man speaks it is always safe to assume that he is a fool. After he speaks, it is seldom necessary to assume it.”
--- H. L. Mencken

We fight, our whole lives, against assumptions. We all do: men, women, Autistic, Neurotypical, gay, straight, black, white, everyone. We are formed by what we are thought to be, by others, and by ourselves. We are expected to be smart or dumb, base or refined, educated or ignorant, cold or emotional. Other people treat us differently based on these assumptions, and we expect more or less of ourselves based on how we match up to our own expectations of ourselves -- our assumptions of what we should be.

We, all of us, are moulded by society, by those who surround us. For high functioning Autists, this is no less true.

Before diagnosis, this force to conform can cause intolerable stress. There are things which we are expected to do which Autists simply cannot do, or can only do with difficulty. Things which are taken for granted so much as to be invisible until the convention is broken.

People are supposed to like socialising. People are supposed to be able to look one another in the eye, unless they have something to hide. People are supposed to be able to chat in noisy places. People are supposed to react appropriately in a social context. People aren't supposed to freak out in crowds. People aren't supposed to find common and unremarkable sensations to be intolerable. There are all sorts of things you don't realise you assume until that assumption is violated.

And there are assumptions made about those broken assumptions. If you can't hold someone's gaze, you are assumed to be shifty. If you overcompensate and stare, you're assumed to be creepy. If you can't remember what you were supposed to be doing, you're scatterbrained, or undisciplined, or lazy. If you react too oddly, then you're rude.

Awareness

“We live on a placid island of ignorance in the midst of black seas of infinity, and it was not meant that we should voyage far.”
--- H.P. Lovecraft

After diagnosis, the stresses are different. First, there is the stress of re-evaluating one's entire life in the light of this new information. It's not a trivial thing to retrofit such a fundamental and powerful addition to one's very self-identity.

But then you start to pay more attention to what people say about Autists and Aspies. You can't help it: you hear the word "autist" and your ears prick up, you join an internet group to see what people are saying. You discover yourself as a citizen of a new world. And with that, you discover that not all the things said about you are nice.

You discover that people are antagonistic to Aspies, because they knew someone who everyone knew was an Aspie, and he was a rude entitled prick. (Well, I'm sorry about that, but I don't think that person is representative... or is he? How would I know?) They are antagonistic to the very idea of Asperger's Syndrome, because it's an excuse to be a rude entitled prick, and it's not even a real condition, it's just bad behaviour, and those spoiled brats wouldn't even be that bad if their mothers and doctors stopped coddling their
tantrums and gave them more beatin-- discipline. People who get upset with you when you point out that the link between Autism and Vaccines has been proven to be not just wrong but actively fraudulent, as if it's your fault that they have left their children vulnerable to Rubella. You discover that Autists aren't really people, they're more like soulless shells in human form. You discover that you aren't your parents' child, but an empty changeling left behind after the Autism fairy visited and cursed your family. You discover that Autists don't feel emotions: we're like psychopaths, but we're the 'good' kind.

And, every time, there's the Doubt. But -- I'm not that annoying ... am I? I'm not throwing tantrums because I'm an immature entitled man-child ... am I? I feel emotions so strongly that they can tear apart my soul from the inside ... or do I?

Or is it that those emotions are the proof that I'm not really Autistic, that when I present myself as such, that I'm lying. I don't really belong in this community. I don't really deserve to ask for help from that association. I don't really merit accommodations, it's not really an explanation.

Maybe I'm just the horrible failure of a human being I always thought I was.

Maybe it's just me.

Hope

“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
--- Albert Einstein

But then... in these communities, even as I struggle against my own instinct to flee them in shame, as a stranger and an alien and an imposter, I find something vanishing rare and precious: people who are saying the thoughts in my mind.

Even in such benighted places as television, there are characters who I actually understand, and who have their own dignity in their difference.

Mr Spock, Worf, Sheldon Cooper, Temperance Brennan. They all find themselves surrounded by aliens who are doing bizarre things for incomprehensible reasons. Where the incomprehension goes both ways, where the people around them don't understand why their passions are so important to them, why they react as they do -- as they must. And these characters must at least pretend to conform. And it is shown -- in Star Trek, and Big Bang Theory, and Bones -- that they are willing to make the effort, but it is an effort, and it's hard, and exhausting, and sometimes you just need to meditate, or fight holographic enemies, or lose yourself in physics, or run away to Paraguay.

We learn, all of us, every day. Not everything comes naturally, though. Muscles grow tired, and not all start as strong as others. Most of us can pass as normal for a while. But it's bearing a heavy load, and all of us need to put it down and be ourselves at times.

Some of us are lucky enough to have found a place, and found people, where we can do that and still be accepted. Where we can put down the mask for a while and stop doing the over-the-top monkey gesticulations which people seem to expect as feedback: grimaces and rubbery faces, where a simple raised eyebrow and long-held look feels more natural. Where it is understood that we get overwhelmed, and not pushed past our limits. That we do get upset at stuff which seems trivial to other people. We know it's trivial, we don't want to get upset -- not least because we know it upsets those around us -- but we do. Giving us warning of change takes some of the sting, else allowing us to hide away and get good and angry until it's out of our system, or else hide away and cry for no reason we can articulate. Where people remember that we hate the telephone with an abiding passion, and don't make us make calls unless we have to. Where we don't have to talk (I'm highly verbal, but sometimes it takes more effort than it seems worth to force the words out, when I don't have the energy to be other than silent).

I've been blessed in finding such a place, and such people.

I hope that in this, at least, it's not just me.



(My effort from last year.)

There is a place for news on Autism at about.com. Recently, the lady who runs this blog noted that everyone who talks about Autism is talking about children, and she requested stories and essays from adult Autists.

I submitted an essay, which was well received. (It was tweeted by such luminaries of whom you've never heard as Steve Silberman.)

Alas, some others were not so well received.

There is a strong tendency for some parents of Autistic children to dismiss the words of Autistic Adults, in a massive display of Catch-22: If you're communicative enough to have anything to say about Autism, then you're not autistic enough to count as autistic, so just shut the hell up and listen to me tell you what your experience is and how wonderful Autism Speaks is and how Chelation and Gluten-free diet and ABA training is the only thing stopping my poor children from being uncommunicative locked-in vegetables!

Some, by no means all, but they're very loud, and they're very angry.

I wonder sometimes how those children will react when they're adults, what with being told that they are basically and fundamentally broken, and it was only the unstinting love and devotion and tens of thousands of dollars spent by their parents which has enabled them to be as functional as they are, not that they'll ever be capable of having a real job, and mummy and daddy will speak on your behalf in public, darling, but we really do love you and think you're wonderful, even if Autism stole the child we should have had.

Don't get me wrong; I don't doubt that these people really, truly, deeply love their children. But I also wonder if the way they're expressing it is causing their children harm.


This is the reason for Aspie/Autie spaces: it's not to be deliberately clannish and isolationist, it's to protect ourselves from the people who like go all Four Yorkshiremen, and tell us that their child is autistic, so how dare we claim that it's not always that bad? How dare we claim that some people can be autistic, and live normal lives? How dare we not concede that they have the right to speak on our behalf, and we don't?

I realised a good analogy for describing APD the other day.


OK, so the problem in my brain is filters. My filters don't work properly, filters which most people have, and don't even notice. But as it's in the auditory realm, it's difficult to describe what's going on, especially as I have always had this problem, and don't know what it's like to be able to do what most people take for granted. And I suspect that most people take it so much for granted that they won't understand the description either. But I think I can describe it if I translate it into the visual paradigm:



You and I can read. We can read quite quickly. When you're reading in the best of conditions, then it's just a page of text, printed crisply in a comfortable font size on clean white paper. You can keep up, then: no problems. So can I. It's easy. No distractions. You can even stay ahead: read so fast that the printer can't keep up, so you have lots of spare time to think while you're waiting for the next bit to be read.

But, the real world is never that clean. There is always background noise: the paper is never quite pristine. Sometimes the background just makes for a pleasant mottled pattern which does not degrade from the clarity of the text. Sometimes, however, it's distracting, a pattern of scribbles. It's like lines and splodges all over the page, and the text printed on top (or underneath). It's harder to read, now. Not necessarily impossible, but it takes more effort to decode.

Sometimes the problem is the text. Maybe the speaker mumbles (the font is small, or blurry, or the text fades in and out). Maybe his tone is distracting (the font size changes distractingly, or is confusingly laid out). Maybe the very pitch or timbre of her voice is annoyingly distracting (the whole thing is printed in Comic Sans, or antique Copperplate, or a child's scrawl).

And of course, there are combinations of the above. With that in mind, how quickly are you reading now? Still keeping up? How much effort is it taking?

But now we have the real kicker: filters. There are two people talking at once: one's speech is printed in blue, the other in red, but both are overprinted on the same page, as well as the background noise, as well as the blurred text and annoying fonts. BUT... the thing is, most people won't notice. Why? Because most people are gifted with filters. Like magic glasses which change colour, now red, now green, now blue. And they don't even notice they have them. Now, with two voices, they might not even notice a problem: they just set their filters and the unwanted text almost vanishes. Now they can keep up again. And when they want they can switch filters and review the other text. The truly magical thing is the Cocktail Party Effect: most people have a memory of the text even when it's filtered out: they can switch filters and actually have a bit of history there to refer to, happily contextualised. Two layers, three, four even.

Of course, even this can be overloaded. Enough text overlaid over text over text over text, and even filters can't extract what meaning is left.

And then there's people like me. We don't have working filters. What we see is the whole page, and we have to extract one coherent text from the messy chaotic layers. We make many more mistakes. We have to spend much more conscious mental effort on it, so that we get exhausted from it quickly. We get behind, still figuring out a word or sentence long after everyone else has moved on. We get very good at figuring out what's going on from the occasional clear word, or part thereof. And we get amazingly frustrated. Most people, with their filters, can listen to a conversation in the distance, and ignore people talking next to them. In visual terms, the closer text is in a bigger font, and the more distant conversation in faded ink, but the filters compensate for that. We, without filters, have to consciously decode the mess of scribbles and ink, to find the hidden layers we're interested in. In an environment with several people talking, every conversation is one layer of a palimpset, and we usually want one of the faded and mostly illegible layers underneath.

Most people have the filters work so automatically that they have plenty of mental capacity to think about what was said, reflect on it, understand it, think about their reply. We don't. All of our mental capacity is taken up by the struggle to read, leaving nothing for comprehension or reflection or reply. I can think about my reply or listen to you talk, I simply can't do both.

And we have to be able to read it in real time. No pausing and going back, no slow study to make sure that we have the correct reading, that we haven't read a word on the wrong layer, or completely read it wrong and got utterly the wrong meaning. And it's reading this text through a narrow window, fighting and struggling for one painful word at a time, hoping we catch the meaning before the window moves on forever and leaves us floundering behind, confused and embarrassed.

So that's why I can't hear you when you talk, although everyone else in the room has no trouble. That's why noisy parties make me uncomfortable at best, distressed and melting down at worst. This is why I have to retreat sometimes, to escape or put my fingers in my ears or put on headphones and turn it up.


It doesn't explain why I can't operate visually and auditorally¹ at the same time, why I can't hear you if I'm reading, why I can't watch TV if I'm trying to talk on the phone.

But no analogy is perfect.







[1] Vision/visual/visually are not complicated concepts: why are there not equivalents for sound? Audio/auditory/*auditorally. You know it makes sense. Now, of course, someone in comments will point out the exact word I'm looking for which can be found in a dictionary, and I'll look like a right twit. Such is life.