About the way autistic people put our skills into different areas.
The following was written to a mailing list about a journal article about autistic twins with seemingly different developmental paths. Ignore any part that seems to be about context, and not the main point of the message. Also I am very sorry that I used such jargony language at some points. I think reading the journal article put my language skills into that mode, and I couldn’t get them out of that mode enough to write in regular English:
In that era, they may still write someone up as having lost the diagnosis just because they learned to talk. Which is sort of normal at the age of four for autistic people. For one subgroup of autistic people, learning to talk at four is as normal as nonautistic people learning to talk at a different age.
To me what this shows is that autism is an adaptation to certain traits. As in, it’s basically a limited set of resources, and different autistic people’s brains allocate resources differently. So two people can have roughly the same original traits, but develop in directions that (at least externally, and sometimes also internally) look extremely different. Due to using resources for different skills in different ways.
It’s one reason I hate the whole idea of progress versus regression. Because what that actually means, is basically. Progress is allocating skills in a way that on the surface appears more normal. Regression is allocating skills in a way that on the surface appears less normal. Both are actually forward growth, they’re just forward growth in different directions depending on where each person allocates those limited cognitive resources.
It’s also why I hate when people say things like “I just don’t see how this adult can compare to my child.” Aside from the ridiculousness of comparing adults to children. You can’t tell based on surface characteristics, whether the inner characteristics of two autistic people are very similar or very different. Well you can tell. But not based on the kind of surface characteristics (like presence of speech or writing skills) that most people use to judge what kind of autistic people is which. Two people can be extremely similar, yet appear very different, just because some surface skill is different between them. And they can be nothing alike, yet people assume they have everything in common, just because they have some surface skill in common.
For instance there are autistic people who have the stereotypical aspie skill set but can’t speak. And people who can speak and are as far from the stereotypical aspie skill set as is possible to be. But people get grouped based on the presence or absence of speech. When speech is really just a surface characteristic that can get changed easily due to things other than basic cognitive makeup.
Also why I hate people making a big deal out of what times in my life I spoke and what times I didn’t. Honestly speech is a surface characteristic. It doesn’t have anything to do with who I am underneath. Nothing about me changed drastically. Something that was very hard just became nearly impossible (except in a few rare circumstances that can’t be repeated on command). But people treat me like there was some huge change, which changed the “type” of autism I had forever. There wasn’t. I’d be the same type of autistic person whether I could speak or not. People like me sometimes can speak, others can’t, it’s not something you can use to determine what someone has in common with me. Or what I at one point in my life have in common with myself at another point in my life.
People who judge on those things strike me as horribly superficial.
But 1979 was during a time period when autism had been changed from its original conception. Originally, most autistic people were people who could speak. Both Kanner and Asperger’s patients could mostly speak. Then at some point things shifted so that lack of speech was considered essential to being autistic. And during the seventies especially, tons of autistic children were undiagnosed as soon as they learned to talk. I’ve known several of them. They’re still autistic.
So it’s possible that even if you find the article, it will say he lost his diagnosis, because of learning speech or learning to interact with people better. But that won’t necessarily mean he actually did. Expect such subtleties to be lost on any person who has their mind set on the idea of recovery, though.
Autistic Problem 73: When your thoughts move too quickly to articulate, so you end up umming and ahhing for much too long before answering.
Back when I could still talk sometimes, I was at what was basically a debate club convention. I had prepared a talk on one of the subjects and got in line to say something about it. I had it all lined up in my head. I got to the front of the line — despite them trying twice to skip me because of my appearance. I got up to speak…
…and I hadn’t remembered to put my otherwise well-planned speech into words. I hit a couple random words and phrases and just stood there with everyone in the audience yelling ridicule at me.
What made things much, much worse:
1. The subject of the debate was decriminalization of marijuana.
2. I was wearing a long tie dyed skirt.
So practically the entire room thought I was a stoned hippie, too stoned to talk coherently. I’d actually never done marijuana and was interested in the subject because I knew two people who smoked pot, one medically and one recreationally. The speech I never gave was going to compare their situations and talk about why neither one should be considered a criminal for it.
But it was never to be, and instead I had a memory that made me flinch and tic for over fifteen years every time I remembered it. >_<
Conversations using intonation rather than words.
Friday I had an entire conversation in the elevator by grunting. It interested me because I already knew that with comprehension I could either do words and no tone, or tone and no words.
There’s a stereotype that not perceiving tone at all is the only configuration for autistic people. The reality is more like the autistic people able to talk about the matter are far more likely to be stuck in a mode where comprehending words takes priority over tone. But even Temple Grandin says that she can do words or tone but not both. My brain’s preference is tone over words, but I can switch into words over tone sometimes.
Anyway, until Friday I had very little idea that this could apply to not just understanding but also talking. I knew that when I could talk, I often had no intonation except when echoing people in certain ways. But I didn’t know (or didn’t know the extent ) that, now that I can’t talk, I can use intonation. I’ve met nonspeaking autistic people who could mimic the music of a conversation quite accurately, but I never connected it to that similar issue with language comprehension where I can only hear either words or the intonational music but not both. And I never saw this ability in myself until right after I’d done it.
The conversation basically went:
“How are you?”
“Well, I’m not doing too great actually…”
Another important thing: I suck at those conversations when I type. So badly that I once scored the lowest possible on a test of communication skills because it revolved around stuff like that, and “thanks” and stuff. I already knew most people grasp what I mean if I thank them by grunting. But this is the longest conversation I’ve had with a stranger by grunting and yet he understood every single thing I said.
Apparently there was a period in my early development when I grunted instead of speaking. I know I didn’t understand words back then so I wonder if I was reacting entirely to tone. Even today I have a tendency to exasperate people by grunting and gesturing in ways they can’t understand.
But what they really don’t understand is the amount of brain reorganization and cognitive pain that typing often requires. Sometimes it is so difficult that it translates into worsening any physical chronic pain I may be experiencing. So when they say “Just go get your keyboard and type it!” I sometimes growl at them and they don’t know why.
With my friends, communication is a whole different matter. Several of them have independently told me that they sometimes go between half an hour to a couple hours without realizing that I haven’t typed a single word. That is less about grunting, and more about their ability to get the basic idea of how I’m feeling or thinking, through my body language. Another thing autistic people are supposedly unable to do, but that we can often do quite well with each other. I value friendships where we can communicate well without words.
But it seems that there are total strangers who can have a basic conversation with me, and understand my “words” through intonation alone. And I can carry on conversation types that I can never do in words, as long as I stick to grunting and intonation.
And now I’d better post this because I’ve fallen asleep during every single sentence at least once, and had to edit things because if typing random letters or responding to hypnagogia.
My voice had an undertone to it. Sometimes it was barely detectable. Sometimes it was pronounced. I could never hear it unless I was listening to myself on tape. I thought that it must be the way nobody likes their voice on tape. Except nobody else’s voice on tape had that undertone.
It was the same dull sound people made when they said ‘duuuhhhhhhh’ and ‘retaahhhhhhd’. Or when they mimicked someone they were trying to make sound stupid.
I worked hard to get rid of it. I recorded myself over and over again trying to figure out what to do. It involved tightening things. Tightening lots of things, things that I mostly couldn’t be bothered to tighten when I was also trying to speak or sing. I guess some muscle in there is loose most of the time and how loose it is determines how much of the undertone you hear.
One day my dad was talking to me, and he repeated something I said. I lashed out at him. I think I screamed at him. He was bewildered. I tried to tell him, “You’re using that voice people use for stupid people.” I don’t remember if the words actually made it out of my mouth, or if so, whether they were changed in some way from my original intent. Whatever I said, his response was just, “But I was just talking the way you actually sound.”
I couldn’t take that in and I didn’t believe him. I couldn’t figure out why he was lying to me about my voice. But I heard things from other people. Spontaneously. “You talk like your mouth is full of rocks,” a stranger said when I was twelve.
And then, a year or two ago, maybe three. I heard a recording of another person’s voice. And I heard it. Sometimes unmistakable, other times subtle, but always there. Her voice had that undertone. That exact undertone. With the exact same range from barely audible to quite pronounced.
So it wasn’t just the tape recorder effect. So my father wasn’t lying to me. Neither were all the other people who said weird things over the years about my voice. It all made actual sense. Which was, weirdly, a relief. So I really sound like that. And I think by now I might not actually care. Which would be good, because I spent most of my life terrified of that sound.
Fey has never liked me to vocalize much. When I could still talk she especially hated it and frequently tried to bite my throat to get me to stop. This video shows a common response to my vocalization. I make a sound and she thrashes her tail around. She doesn’t act like this with other people. Only me. My theories have ranged from things as simple as her not liking something about how my voice sounds, to as complex as her being aware that I should not communicate orally. She’s perceptive enough it could be any of the above. But I don’t really know the reason at all. Any ideas?
From the inside cover of Movement Differences and Diversity in Autism/Mental Retardation by Martha Leary and Anne Donnellan.
[Image description. A chart listing two columns of words with symbols in the middle that imply that any one word in the first column can be applied to any word in the second column, in the form, “Marked difficulties in X, may impede Y.” The first column’s words are Starting, Stopping, Executing, Continuing, Combining, Switching. The second column’s words are Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories.]
This is the very broad sense I talked about in my last post, that some people, including the authors of the article I was talking about, use the word “movement”. I have found this the single most concise way of telling people about the way my brain functions on a very practical sort of level. There’s a lot more to this of course, and not all of it is as negative as some people may read the chart. So when people use the term “movement differences” as applied to autism, it can really apply to all kinds of things about thought, emotion, etc. as well. Not that this chart captures what autism is, but it’s a very good attempt — better than I could do — at explaining many ways that autistic people function. (I’d also add language to the column on the right, not just speech.)
Interestingly, many conditions that most people think of as entirely movement-based, have cognitive and emotional components as well. Including things like Tourette syndrome and Parkinson’s. Unfortunately I haven’t been able to read a lot about it because the person who talks about this the most is Oliver Sacks and sometimes I just can’t stomach a certain view-from-above tone his writing takes towards disabled people at times. I think someday I’m going to have to slog through Awakenings though, because I’m told it has an entire chapter on ways to accommodate trouble moving. (In fact the thing his patients had in that book is yet another thing this movement disorder has been compared to at times.)
A note about “regressive” autism
(Full disclosure: That’s what I’d be classified as. I lost speech sometime between 15 and 18 months old and took awhile to get it back. But was also obviously different from long before this happened.)
There’s this interesting fact I’ve heard from people who make it their business to read all the autism science they can, and evaluate it critically.
See… autistic people who lose language in early childhood (that’s those of us who really did this, not those whose parents misremember it after exposure to antivax propaganda)… there’s a pattern to our language loss.
We do it after learning a certain number of words. Nobody has told me specifically how many.
But here’s the interesting part.
People with Down syndrome almost always have speech delays whether they’re autistic or not. People with Down syndrome also have a high rate of autism.
When people with Down syndrome “regress”, they do it later. They do it when they have learned that certain number of words. So the average age of speech loss in people with DS is older than in people who are just autistic.
Totally demolishes the idea that it’s some kind of poisoning that does this.
I wish I knew the cites for this stuff but I don’t remember. I just thought people might want to know this information for the next time someone tries to convince you we are all poisoned or vaccine injured or other BS. That’s all coincidence, a matter of timing.
And honestly I suspect those of us who “regressed” are those who burned out after learning more of something (in this case speech) than our brains are able to handle and sustain. Which is the story of my life even past infancy — lots of shutdowns and burnouts, both short term and long term. And speech and language are always among the first things to go. I also suspect that many of us are the sort of autistic people whose skills move and fluctuate and slide around to accommodate the situation. But I have no science for any of that.
rob kelly: MOM, TRIGEMINAL NEURALGIA - 11/3/11
I can’t eat or talk without pain! Yet I still try to do both. One is for survival but really both are for survival. I am a social creature and didn’t realize how much until you told me I wouldn’t be able to talk.
So I am practicing silence. It is interesting how others respond to my silence.
First off, hi. I have trigeminal neuralgia too, and am unable to use speech for communication for unrelated reasons. Just so you know why I’ve randomly contacted you about this.
Seriously, seriously, seriously consider finding an alternate mode of communication. While most “official” communication devices cost upwards of $1000, there are apps for iPhone/iPod Touch/iPad that are far cheaper. (An iPod Touch is expensive by my standards, at $200 for the new ones, but way cheaper than most dedicated speech generating devices.) There are also programs for various kinds of laptops.
I use an iPod Touch for most of my daily communication. I have five different apps of widely varying price and functionality (I think at least one requires a net connection, for instance). There’s more than the ones I have too. Any of mine will run on iPod Touch, iPhone, or iPad — I just can’t afford an iPhone or an iPad.
So here’s a list of the ones I have (prices in US dollars):
- Proloquo2Go ($189.99)
- AssistiveChat ($24.99)
- SpeakIt ($1.99)
- Text2Speech ($0.99)
- NeoKate (free)
Definitely check into them before you buy any of the expensive ones, to be sure it has what you want.
All of mine allow a person to type in words. There are programs that are all preset phrases, but I don’t generally use them as they are more limiting and geared toward beginning communicators.
Some of mine also have presets with commonly used words, phrases, and sentences. These may be represented by pictures and/or words depending on the app.
Two of mine have word prediction features to make typing faster for slow typists.
Some of them support both portrait and landscape mode, some don’t.
They have a range of different voices. Text2Speech has horrid ones that I would not use unless I had no other choice. (I think Text2Speech is the one you have to be online for too, but don’t quote me on that.)
Also you may want to get little speakers for places with loud background noise. There’s a huge range of options I’m not even close to well versed on.
There’s apps for Android too but I don’t have one so I know nothing.
Anyway, none of this will let you talk while driving (at least… I know a non-speaking guy who tries to type while he drives — I refuse to ride in a car with him after he drove us straight into a bright orange barrel). But it is a very convenient (and portable — unless you use a wheelchair, devices the size of normal keyboards are a pain in the ass to carry and use) way to communicate the rest of the time. And people who use these devices find that our quality of life has gone up considerably. And that’s true whether the reason for not speaking is unclear speech, cognitive issues, sensory issues, pain, or motor issues — and whether we can speak some of the time or none of the time.
If you do choose to use a device to speak with, you may want to join a mailing list called ACOLUG — Augmentative Communication Online Users Group. They have a lot of good advice.
And even if you don’t get a speech program, having some sort of small PDA-type thing whether it’s an iPod Touch or a Windows device or a smart phone, can come in handy to type into for people to read.
Apparently some of the cheaper speech programs advertise themselves as good for people who just have a sore throat or laryngitis. So I think having your face feel like lightning when you talk is a more than good enough reason. But it’s your decision in the end, I just wanted to be sure you know this is an option — because a lot of people don’t even know things like this exist. Or else don’t even think of themselves as the sort of person who could benefit from them. I can’t emphasize enough the quality of life changes most people experience once finding an easier or less painful way to communicate.