Hello, David. Long time no see. I got to thinking about our conversations some years ago, and something’s bugging me.
I dunno whether you remember me. I came to see you because my spouse was concerned that there was Something Wrong with my interactions with other people, and we were curious as to whether someone with professional training could figure out what it was.
Your eventual conclusion was that it seemed like I didn’t have enough certainty that my parents loved me. Well. I have good news and bad news. The good news is that your description was almost certainly exactly correct, assuming we take “enough” to mean “the amount a normal person would have if their parents were reasonably expressive and supportive”. The bad news is that it is fundamentally completely wrong.
You may not remember, but one of the things I asked about was Asperger Syndrome, because several people had told me it fit me. You dismissed it. I mean “dismissed”; there was no discussion, no consideration, no looking at lists of symptoms. Just handwaved away.
You were wrong. I don’t just mean you made a factual mistake; that happens. I mean that you went about it in the wrong way, and so doing, did real harm. The thing is… I am autistic. No, really. Specialists have looked at this and concluded that, yes, what I have is clearly some variety of autism.
But thanks to my difficulties telling when I’m allowed to ask for more information, or when I should assume that professionals know their jobs, it took a couple more years to figure that out. Years during which my spouse’s feelings were hurt when I totally failed to pick up social cues. Years during which I struggled with things and people thought I was lazy or not really trying because there was no way those things could be hard for someone “smart”.
You know the sad thing? What finally did it was a science fiction book. I read Elizabeth Moon’s wonderful book, The Speed of Dark. A few chapters in, I started thinking, “hey, wasn’t the main character supposed to be weird in some way”? (Go on, read some of the book. It’ll help make sense of this.) And then I realized: This was the only time I’d read a character in fiction who seemed normal to me. He didn’t have random telepathic insights into other characters. He reacted rationally to the information available. He made sense.
I contacted the Autism Society of Minnesota, set up an appointment, and went and saw a specialist. I am told that retyping the questionaire so that I could fix the typos and have enough room to answer questions clearly may have been one of the identifying traits.
So… Please. Next time (if there is one) someone asks about something potentially major, don’t just handwave it away. Take that question seriously, because this stuff matters. It really does affect us.
Here’s some more background, for you or for the other readers. (Heck, I’m not even sure you’ll be a reader, though I’m writing this with intent to send you a link to it, or perhaps mail a copy.)
What brought this on was that I was recently reading some very interesting blogging about autism.
I am, as I mentioned before what they call “high functioning”. Which is to say, I can pretty much pass. (I’m borrowing the term from the transgendered/transsexual community, where it’s used to denote being taken as the gender you want to present as; I’m applying it to being taken as human.) I can talk to people. I can look them in the eye. I can often tell whether they’re trying to shake hands.
But I do have problems. I am, quite often, stunningly thoughtless. I say things that hurt people. When I’m stressed, or there’s a lot of noise, I have a very hard time understanding speech. Sometimes I can’t talk. Now that people know, that’s usually okay. I just make typing guestures and my spouse pops over to an IM client so we can chat. (I am almost never so non-verbal that I can’t read and write.) I ask people to please follow up in email, I ask them to chat in IRC, and I subtly direct people towards media where I am less at a disadvantage.
The thing is… It’s still hard sometimes. I don’t think I’d trade this away, if I had the option, because I like being me, and I’m happy… But that doesn’t mean that I’m somehow unaware that I suck at social. I forget to invite people to things. My mom’s told me any number of times that it’s important to invite her to family things, but the underlying cognitive map isn’t there. If someone asks me “is there anyone else you should invite”, I will of course say “my mom, it’s very important to her”. But that doesn’t mean that I’ll think of it, because the automatic check for social rules isn’t there. I’m not actually aware of other people except when they’re interacting with me. And since people inexplicably don’t schedule all family things to be on a regular schedule I can put in my PDA, I can’t set a reminder to check. (Side note: Wouldn’t it be neat if PDAs could do conditional-reminders instead of scheduled-reminders? “Please remind me every time I enter a personal appointment”…)
Getting diagnosed has helped a lot. Imagine your spouse suddenly flinching away when touched. You might find this insulting? Well, yes, but if you know your spouse is autistic, it is cute rather than insulting. And you can know to respond by hugging firmly instead of touching lightly, and then everyone is happy. But getting diagnosed requires that people in a position to do the diagnosing be aware of the possibility, and know enough about it not to dismiss it out of hand…
Comments [archived]
From: tabuno
Date: 2011-05-21 21:06:16 -0500
diagnosis is not the gospel. nosology in clinical psy is still in its infancy, criteria still undergoing development. from therapy standpoint it’s no good to over-clinicise the client or to encourage them to be defined through clinical diagnosis. perhaps what you perceived as being handwaved was merely an attempt to try forgo the clinicalness, to be a human rather than a disability case. on the other hand, perhaps the real problem is that the core of your condition, as you saw it, wasn’t taken on board and dealt with in therapy. but this doesn’t mean rubberstamping yourself as ‘autistic’ is in itself a solution, albeit a helpful marker, sure.
From: Jesse
Date: 2011-05-21 22:35:45 -0500
I find the vast majority of your autistic behaviors either cute or refreshing now that we know what they are. The flappy-hands are adorable. When you respond to what I actually said, I feel heard and valued. Social cues are overrated.
From: seebs
Date: 2011-05-21 22:36:27 -0500
It’s good to avoid treating people as nothing but a diagnosis, but my whole problem has been that people insist that I’m lying when I tell them I have no idea what they’re thinking. Recognizing that I really don’t have the underlying telepathy other people take for granted is a pretty key part of accepting me as a human.
Or at least as accepting me as whatever I am; some people don’t consider me fully human. That bothers me less than when people insist that I’m lying and I could do all that stuff if I wanted to.
From: Jesse
Date: 2011-05-21 22:42:48 -0500
@tabuno — Clinical diagnosis is a GOOD thing. Lack of a clinical diagnosis is the reason he was labeled ‘lazy’ or ‘insensitive’ for so long. The diagnosis has allowed us to adapt in good, productive ways. So what exactly would be more ‘human’ about refusing to investigate a possible diagnosis?
No, that shrink just fucked up. ;p
From: tabuno
Date: 2011-05-22 02:19:50 -0500
@seebs from purely pragmatic standpoint I can see how a label of a medical condition is a ‘ray of light in the tunnel’: yes, at first glance it may be somewhat easier to get about this world with a rubber stamp. yet doesn’t this say something about our world as a whole? this denial of root causes of things, this avoidance of reflection… hence the situation where all of us at some point or another are bound to feel gravely alienated and trivialised because the overall existential/phenomenological/linguistic/cultural exploration of our condition is not addressed, as a rule. (e.g. do clinicists ever ask themseves why is there a prevalence of Neurosis in our society, which is practically accepted as normality? what does it say about this particular society?) and I believe the therapy’s and clinical practice’s bigger social role should include addressing these larger concerns and promoting this ‘bigger-picture’ awareness and a collective self-reflection, doing advocacy for it. dealing with root social causes, as opposed to just routinely ‘sorting out’ individuals on a case-by-case basis, giving them a ‘happy pill’ or something. simply won’t do!
@Jesse you can look at it this way, sure. and yet, if we give this logic a slight twist by saying: “perhaps it’s because our society (as a whole) is so insensitive it disregards what’s truly going on inside, but handwaves anything which hasn’t got a Psychiatrist’s official rubber stamp with a DSM-IV code number…” :) regardless of the truth or untruth of this statement, I hope it gives you a better idea of what I was talking about earlier. again: diagnosis (perceived “goodness” or “badness” notwithstanding) is not the gospel, there are objective limitations/flaws thereof. additionally, unlike with other medical diagnosis, psychological one is firmly rooted in the very culture where it originates, hence social and cultural background of the nosology as a whole is not to be overlooked (something I try to explain in the paragraph above).
From: seebs
Date: 2011-05-22 04:37:55 -0500
What makes a claim useful, to me, is explanatory and predictive power. A diagnosis of autism has both. It’s a useful thing; it allows me to better make sense of the world and predict future outcomes.
Sure, some people will see only that label, just like some people see me only as any other label I carry; some people view me as “a Christian” and therefore obviously anti-gay, anti-science, and a million other things which don’t really fit. But… That doesn’t mean that avoiding an accurate label would be better than working with it.
From: Pye
Date: 2011-05-22 07:10:33 -0500
My son was diagnosed at 12 and I, a few years later, at 40. We have been fighting for the past 3 years to get the little one diagnosed who is now 10. Yet with 2 “confirmed” Aspies and a nephew with Tourettes you would think it would be relatively simple, but no.
My diagnosis changed my life but more importantly my son’s whole world has been changed. He went from a lazy, annoying, aggressive, argumentative child in school to a grade A student. He got A’s in all of his studies, distinctions in his BTeC’s and is now at Uni studying Criminology and he is going to work at the International Criminal Court in the Hague when he finishes Uni, so he tells me.
He studies German in his own time, spends hours writing things out tenses, verbs, adverbs etc and how things change with the way the language is spoken. Everything has a different colour. To me it looks like a five year old has gone mad with crayons but to him it makes perfect sense.
His diagnosis explained his peculiar habits a couple being: he hated to chew food and everything has to be tidy, like really, really tidy. When he comes home now the first thing he does is check the kitchen for crumbs and if he finds one he has to clean the whole room.
His quirkiness has always been that to us, quirky. Outsiders however found him very difficult to deal with until they understood more how he “functioned”. He still has his moments and I have to say I’m dreading him having his own children as he has no reasoning, no comprehension that children don’t always do as they are told first time and every time thereafter.
Would I change him, or me for that matter, not in a month of Sundays. Do I wish we had discovered his differences earlier, and learnt how to address them soon, yes he would have had a happier time in school.
Always wondered why I agreed with so many of your posts on the Rift forums, makes sense now :)
From: tabuno
Date: 2011-05-22 11:55:35 -0500
@seebs no doubt about that. as long as the diagnosis doesn’t work as a self-fulfilling prophecy at some level. I am referring to the following set of clinical situations. I have a friend who has a multiple diagnosis. He’s a chain smoker on top of that. When his Mom consulted his psychiatrist about his addiction, she got the following reply: chain smoking is a part and parcel of his diagnosis, he cannot undo it in the near future.
that’s what the doctors do: they set a pattern and in a way, yes, he can’t even try undoing it! :)
it’s instances like that that are to be avoided by practitioners: allowing the client to succumb to failure, through word of expertise. clear iatrogenic (medically-induced) harm.