What is autism, really?

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33 Responses to “What is autism, really?”

  1. Anonymous says:

    I worked with autistic kids for several years in the 80s. Number one it is an affective disorder – autistic individuals have difficulty processing the feelings or emotions of others or for that matter their own. Though it doesn’t mean they can’t read some reactions. It was common for kids to do something inappropriate simply for the reaction – ie. touch someone inaproppriately, pulling your glasses off, etc. as an attention seeking behaviour. The hypersensitivity to stimuli is also a common trait – as well as being obsessive or fixating on things or behaviours. One child knew all the colours of the seats in different pancake houses, another one knew all the bridges in town, another would remember all the staffs birthdays, and could do accurate impressions of the staff. I don’t think the overstimulation is a more recent thing, kids would try to stimulate by hand or finger flapping, or picking at themselves etc.
    Certainly there was a certain amount of comfort in a regular pattern and it was upsetting when this was disrupted. And there is a wide spectrum, from low functioning – to being almost independent and to some extent we all have some autistic traits – for instance we can fixate on things we like, and take comfort in a daily ritualistic pattern – and finding it disruptive when that is broken.

  2. Anonymous says:

    Almost 50% of children diagnosed with autism are actually suffering form hidden brain seizures. this is treatable. Developmental disorders in children are typically diagnosed by observing behavior, but Aditi Shankardass knew that we should be looking directly at their brains. She explains how a remarkable EEG device has revealed mistaken diagnoses and transformed children’s lives.

    http://www.ted.com/talks/lang/eng/aditi_shankardass_a_second_opinion_on_learning_disorders.html

  3. ericroded says:

    Genetic ID can come in very handy when picking a mate to create your brood with.

    • Anonymous says:

      I’ll avoid the easy rejoinder here and say that there is exactly one situation where knowing the probability of bearing an autistic child with someone actually matters… the situation in which you know that you can’t or won’t appropriately provide for the child. Chances are that if you have the (vast) resources and maturity required to care for an average child, you have the means to care for an autistic child. Of course, this is unless you really believe that having autistic children is a generic “bad”… You could make a lot of arguments about the child not leading a fulfilled or happy life, contributing to society, or similar nonsense, but when you extend these arguments to probable outcomes of pairings from, say, low-income parents or any one of thousands of non-optimal backgrounds, the reasoning fails in a way that should be immediately obvious to anyone. The fact is that exceptional people are extremely rare and we need all them. Depriving the world of the contributions of autistic people is a ridiculous proposition. My wife’s group would lose it’s amazing bass player for one thing, but that’s just the pointiest tip of the iceberg.

      Having a generation of parents that can model a healthy, loving relationship will almost certainly result in a richer, healthier society, than a generation whose parents subjugate emotional fulfillment in order lower the odds of a such an arbitrarily decided genetic “flaw”.

  4. current says:

    Reminds me of the novel “Distress” by Greg Egan
    “[No more] Voluntary Autists lobbying for the right to have their brains surgically mutilated so they could finally attain the condition nature hadn’t quite granted them . . .”
    Recommended reading ;)

  5. Oceanconcepts says:

    Friends have an autistic child I have known since birth, now in his teens. He exhibited all the behaviors- rocking, unable to engage visually, nonverbal, volatile and very difficult. They were in a position financially to be able to afford the early, intensive, one-on-one therapies, even though the “experts” told them he was extremely low IQ and would never see the benefits. Their dedication to helping him was phenomenal.

    He loved to rapidly flip the pages of books, always one after the other and always upside-down. And always every page. He’s still mostly nonverbal, but learned to communicate by writing, first with an assistive device and then a keyboard. That’s how they found he thad taught himself to read- upside-down, because that’s the way he had seen books when he was being read to. He reads a page of text as essentially a snapshot, in a second or two, with full comprehension. He was reading, not just flipping pages. He is far beyond his years in math skills and comprehension. He writes with clarity about his difficulty in filtering sensory input, how it can be overwhelming, why he does things like the rocking, how he wishes he could talk, but his mouth doesn’t work right.

    It makes you wonder how many are locked inside a sensory prison that no one ever reaches into.

    • kschulz says:

      Oceanconcepts: thanks for this comment. I’m a writer with a professional interest in the story that you share. If you’re willing and you have a moment, could you drop me a note and let me know if there’s a way to get in touch with you? To assure you that this is a legitimate inquiry, I’ll share my website: http://www.beingwrong.com. You can find info about me and a way to get in touch there.

      Many thanks.

  6. Anonymous says:

    Thanks @Nadreck. My son is 6 and high-functioning ASD. I imagine that when he is older he will say many of the things that you are saying. At present, he is mainstreamed in an integrated classroom but having a hard time socially. What can I say to him or do for him to help? Thank you.

  7. naturegrrl says:

    Neat post, interesting comments, but I zeroed in on a (minor) mistake regarding cat behaviour. Tangent alert!
    Cats do indeed miaow at each other. Mine do it all the time, mostly when they are separated on different floors of the house and looking for each other. It’s a different flavour of miaow than the one they use for “hungry!” but it’s certainly a miaow. Their hungry miaow is shorter, repeated and of medium loudness. Their searching miaow is long, loud and often just once, but if it repeats there is at least 30 seconds between them. The searchee will respond to the searcher with a shorter miaow that seems to signify “on my way!”
    They also make a variety of trills at each other when they’re playing.

  8. Jesse M. says:

    It may be that the Neuroskeptic blogger is considerably oversimplifying, but the theory sounds too broad–psychedelic drugs also seem to make a person hyper-sensitive to stimuli, and the latest research seems to say that their effects have to do with a major increase in excitatory activity in the brain, but a person on psychedelics doesn’t seem to act that much like an autistic person (not to say you couldn’t find similarities like increased ability to become absorbed in little details most people don’t pay too much attention to, but then there are also seem to be big differences like the common autistic trait of being really into routine and organized structures, like this kid)

    • Anonymous says:

      I’m someone with Asperger’s Syndrome. I’ve noticed that my reactions to psychedelics are noticeably different. For instance, when I’ve taken MDMA my tactile sense doesn’t change one iota. On LSD, I get some visual aberrations but have also noticed that many of those are due to uneven focus, vibration/shakiness of the eye itself, etc.

  9. bulletsweetp says:

    I agree with Nadreck about the root mechanism. This is actually predicted by the Hierarchical Temporal Memory (HTM) model of cortical function devised by Jeff Hawkins (and sort of independently by Judah Pearl as Bayesian belief updating).

    This model says the main function of the cortex is prediction. The way this happens is that signals go up and down a hierarchy, with lower level features being predicted at lower cortical levels, higher level features at higher cortical levels. Whatever signal from below cannot be predicted successfully is sent to higher levels, and hints about what might be coming are sent to lower levels. This explains why there are massive downward connections as well as upward. Finally, what we actually perceive is whatever signals cannot be predicted by the whole of the hierarchy, ie whatever reaches the tip-top level — which is a miniscule amount of info — is what we subjectively perceive.

    My take on autism is that there is a failure in the *downward* connections, causing prediction to be very hard to develop, and causing *all* signals to be unpredictable and therefore reach the top, and impinge upon subjective consciousness. This would be a massive amount of undifferentiated information, all seeming to have the same level of importance.

    I don’t know if anyone actually learned on the subject has had the same idea. I just read a lot of the literature about it because my nephew is autistic.

  10. offbase says:

    Too bad people gotta be called anything but doing zenmind 24/7 is dangerous – like, a car could run over you. The homosapien brain didn’t really crawl outta the seawater all that long ago; ie, it’s an imperfect tool – so people resort to shortcuts such as “concepts” “categories” etc. Here is where I cop to being ASD – & SPMI – so the idea of being “differently brained” in whatever neuroscience sense feels a whole lot better than what I usually get.

  11. turn_self_off says:

    As an adult diagnosed Asperger Syndrome (aspie i think is the shorthand) the hyper-stimulated sensory bit is fitting in retrospect. The simple background drone of a cafe can drive me up the walls, making me unable to concentrated on anything as i try to keep up with 5+ half-heard conversations on instinct. And my thoughts have always been more organized when i do something physical, pacing, drumming, fumbling a pencil or pen.

    • Jesse M. says:

      As an adult diagnosed Asperger Syndrome (aspie i think is the shorthand) the hyper-stimulated sensory bit is fitting in retrospect. The simple background drone of a cafe can drive me up the walls, making me unable to concentrated on anything as i try to keep up with 5+ half-heard conversations on instinct.

      This brings up an interesting question, is there any correlation between low-level forms of autism like Asperger syndrome and ADD or ADHD? (i.e. are people who have one more likely to be diagnosed with the other?) I think I probably have ADD though I’ve never tested for it, and although I don’t think I would qualify for Asperger’s since I don’t really have significant problems reading social signals (though I have some problems with ‘acting them out’, like being bad at small talk), I did score 30 on the ‘autism spectrum quotient’ test where the average person’s score was 16.4 and those with some form of autism usually scored 32 or higher. Either way, I definitely relate to the need to avoid all background distractions if I’m trying to concentrate on something…

      • turn_self_off says:

        Best i can say is that i have read some personal accounts where people started out with a ADHD diagnosis and medication for that, but later got switched to Aspergers. Quite likely there have been cases going the other way as well.

  12. turn_self_off says:

    Btw, being without a innate ability to read social clues has provided a interest in all things human interaction. And sometimes that makes for some funny insights into what humanity accepts by default but that has no logical basis at all.

  13. other side of the river says:

    Some good reads if this topic interests you:

    John Elder Robinson’s “Look Me in the Eye”
    Daniel Tammet’s “Born on a Blue Day”

  14. Anonymous says:

    Another person/movie/book to check out concerning Autism is Temple Grandin. She has lots of books and the movie that just came out about her is very moving. It also does a good job (from a non-autistic person’s opinion) of showing what the sensory aspect of Autism would feel/sound/look like.
    I work in an Autism room at my local high school as a one-to-one aide. I have never gotten so much joy from a job than I have working with my students these past few years. They make me laugh and smile everyday. We have fun and it is amazing the amount of progress they have made this year with communication and self-calming strategies. Reading all of your comments has helped me find ways to explain to others what Autism is and has helped me find a few new ways to relate to my students.

  15. Anonymous says:

    Most likely, it’ll wind up being a bit of both. There may be one single condition (whether genetic, environmental, or both) that is responsible for most of what Nadreck called the “stereotypically autistic” behavior. But then there may also be a range of genetic mutations which cause a somewhat overlapping set of symptoms in subsets of people. That would explain why it seems so hard to pin down any specific gene, or even why there is so much disagreement in how to define autism in the first place.

    There’s no reason why it needs to be an either/or thing. Same with the old “nature vs nurture” debate: it’s both, stupid!

    Thesis -> antithesis -> synthesis, right?

  16. Anonymous says:

    As amply demonstrated by this post, ‘autism’ is really an argument of definition. You say, “What causes autism?” and the answer is: That depends on what you mean by ‘autism.’

    A better question to ask is: Who are the autistic? What do they have to say about their situation? And this sort of approach, where you ask people what’s up in their heads, is completely contrary to scientific method. The researchers can’t ask autistic people to be self-reflective, because for one thing they don’t trust the autistic to know enough to tell them, and also because you can’t write a paper that is your research subject’s ideas.

    Basically, as a society, we have no clue how to *be* alongside each other, and would rather define our friends and neighbors as deficient simply because they’re different, and then explain the deficiency in order to appear clever.

    As another person ‘on the inside,’ I generally agree with Nadrek: Most of what we call autism comes from problems with processing stimulation. Even then I hate to use the word ‘problem.’ It’s just the circumstance of my childhood development. For some autie people this challenge is much greater than it is for others. But you start out as a very young child who ends up having to skip one or two levels of childhood development because of this challenge, and then the real problems start: ‘Normal’ people start to kick you in the ass (metaphorically and literally), and it doesn’t make any sense to you, and so you develop a permanent state of PTSD. Then people deems you weird because you react negatively to them.

    And on it goes.

    And about the hand-flapping: Try it. Go some place quiet and alone and get introspective and start flapping your hands. Allow yourself to realize that it’s relaxing, because it is. :-) It gives your brain outside stimulii to process, which brings your attention away from your racing thoughts and endless-loop stress reactions. It works for neurotypical people, too, it’s just that it’s not a stereotypical activity of the neurotypical, so it becomes a ‘symptom,’ rather than just something that humans can do. Rocking is the same. Google ‘PTSD rocking’ and you’ll find that it’s just a stress reaction, not a portent of Total Brain Damage and Ruined Autistic Futures. Neurotypical people rock, too.

    • anansi133 says:

      It’s funny you bring up the hand-flapping, because I was just trying that one on for size yesterday. In the episode, Mr Monk and the actor Adrian Monk talks about his own affectation with his hands, telling his actor to try to look through the fingers to get a different perspective on the crime scene.

      Our autistic son moves his hands much faster than that, but looking through the fingers, I wondered if his persistence of vision is maybe different from ours- maybe he’s got a different “frame rate”?

      I’m not optimistic that the search for a cure is very creative or sincere. Researchers keep saying “brains” when they clearly mean “minds”, and the funding and interest for a genetic cause is much greater than for an environmental cause. (So too with cancer)

      One thing this boy has taught me, is that the word “idiot” should never be confused with the word, “stupid”. He’s clearly quite smart in certain very limited ways- no one who was paying attention would ever classify him as mentally retarded. But the characteristic gibbering is unmistakable, and really hard for my soul to endure.

      I’m certain I have a touch of what addles this kid: it’s not always clear to me that learning to talk has helped me be any happier in my life.

  17. Anonymous says:

    I think that the theory of overstimulation is really only part of an answer, if that. I’ll be interested to see where the research goes, though.

    My own six and a half year old may never benefit from such research, but I tell ya, if may help my future grandchildren, I’m on board. :)

    I would like to say, though, that plenty of autistic folks know exactly what’s going on with them. They just may lack the means to articulate it in the moment or at all in a way that neurotypical folks can understand. My own son is mostly non-verbal (only one sentence and a handful of words he uses when prompted repeatedly), but he can read and write. He can use a computer, knows math, and is generally sharp as a tack, even though his psych says he’s at the lower-functioning end of the spectrum. (Which I don’t debate — he’s still not potty trained, and is dangerously impulsive, forex) I’m sure that one day in the very near future, he’ll be able to tell me, either through PECS or through writing, what he’s thinking and feeling.

    So, while this research is exciting, I can’t help but wish a little more money would go towards helping people who are autistic now, rather than just causation theories. I know it’s important and may lead to therapies which help, but, yeah, I’m selfish, and I’d like something *right now* that can help him navigate the world a little more easily than he can at present.

  18. Anonymous says:

    Sorry about posting anon, just not brave enough to talk about this with my name attached to it, unlike Nadreck.

    I really agree with Nadreck’s assessment. What has gotten me out of the worst of the problems is dumb luck. Getting born with extremely high IQ, getting ONE great teacher in grade school for a year, learning self control and relaxation techniques (through first karate and then judo, both with excellent coaches) and then lucking out and meeting a woman who accepts my many strange behaviors and supports me as needed.
    Luck, and creating the conditions for more luck.

    The processing of stimulation is really the core here (as yet another person “on the inside” that is my experience also).
    I would ask the neuroscientists about signal suppression, and the normal pulses of signals required to keep neurons active (the “background” activity of the brain).
    If there is a limitation in any systems required for regulation of signals (signal rejection, signal matching for attenuation, etc.) then the normal background pulses could be making something akin to a feedback loop when summed together with input which should have been filtered. Also, if some neurons retain their “charge” a little too long (they need a certain amount of signals within an X amount of time to fire) due to some flaw, then signal could get passed through which really shouldn’t have. If this is happening in many places then we might have a problem.
    Just sayin’, there are multiple avenues of research for autism, some of which are unexplored, mostly due to the techniques required being rather new.

    @Anon #13
    Asking people about their internal processes CAN be used to some extent in science, especially to give an understanding of the highest level of processes. Introspection is a usable tool, but due to its inherent flaws it needs backing up by other methods. Those other methods are finally usable nowadays.

    • Michael Smith says:

      Anon @20,

      I would ask the neuroscientists about signal suppression, and the normal pulses of signals required to keep neurons active (the “background” activity of the brain).
      If there is a limitation in any systems required for regulation of signals (signal rejection, signal matching for attenuation, etc.) then the normal background pulses could be making something akin to a feedback loop when summed together with input which should have been filtered. Also, if some neurons retain their “charge” a little too long (they need a certain amount of signals within an X amount of time to fire) due to some flaw, then signal could get passed through which really shouldn’t have. If this is happening in many places then we might have a problem.

      A lot of what you describe sounds like Epilepsy, but possibly at a different level of abstraction. A drug like Carbamazepine disables some sodium channels and reduces the number of signals flying around. I take it as an anticonvulsant but it also has subtle affects on my personality. I am normally a fairly disorganised person but when on tegretol I have a slight tendency towards buying storage units, making lists of things on spread sheets, doing my washing on time, etc.
      According to wikipedia off label applications include ADHD (sounds reasonable to me, though you would need to take a lot of the stuff to get a substantial effect) but they don’t mention Autism. But if its signal suppression you want, you need an anticonvulsant.

  19. Jack says:

    Funny to see this post. Actually thinking about Autism since I have neighbors whose kid is clearly on that spectrum. And grew up with some folks who were Autistic yet their parents avoided treatment.

    From my understanding, it’s basically a disorder where folks can’t process things properly and cannot take things to the next level. Like, someone with Autism would see a cat who is meowing and not be able to describe what situation the cat is in past that basic description. Is the cat lost? In pain? Happy? Hungry? Most folks would have those questions enter their brain. Someone with Autism would just know the cat is meowing and could never think past that or go past that.

    So I can actually see both of these ideas playing into one another. But I will say the over-stimulation angle might be a modern occurrence. It’s completely plausible that someone 20 years ago would have been so under-stimulated compared to today they would have never had symptoms triggered. Nowadays, BOOM too much information blowing their minds.

    But what was never clear to me is the source of the self-regulating factor. The self-awareness of Autistic behavior. If someone in an extreme case of Autism is rocking back and forth when confronted with a problem, what is it that blocks their minds from understanding what is happening.

    I guess in the end to someone who is Autistic, folks who aren’t Autistic have a “sixth sense” of understanding?

    • Nadreck says:

      No, the problem is that the cat is also doing 10 other things (only 6 of which other people can sense at all) at the same time so it takes longer to sort out the common denominator. The same questions arise but you have to be smarter to get the same answers. You also are probably deliberately shutting the cat noises out along with 50 other noises irrelevant to your immediate purposes.

      Interesting that you should bring up cats. All cats are autistic as, being small predators, they have an even higher level of sensory input than we do. I recall some study determining, for example, that they have the sharpest hearing of any land animal: they have to be able to here the ultrasonic whistles of the mice they eat as well as the subsonic ground noise of whatever is coming to eat them. A lot of the noises they make, specifically most of the meowing, are only made when they’re trying to communicate with humans. They don’t use these in inter-cat communications. I suspect that they’re dumbing things down for us. Once I put my mind to it, due to a bout of cat-sitting, I found that I can understand the kitties somewhat better then their owners due to a similarity of outlook with respect to how many things happening all at once constitute a communication (and other things). For example, they’re terrible liars, in both senses of the word.

      I don’t quite understand your point about rocking behaviour. Are you asking whether or not we’d know we were rocking? Of course we do. Do we understand that it’s a result of being upset? Yes. Do we notice that other people don’t do exactly this when they’re upset. Maybe, if we thought about it: you lot do twitch around a lot than we do in general but this particular nervous tick isn’t in your repertoire. Do we understand that it’s upsetting others because of their intolerance of different behaviour? Probably not unless you can be bothered to tell us in a declarative spoken sentence: a rare occurrence indeed! You’re all a pretty aloof and emotionless (seeming anyway) lot anyway so what’s the difference here? Where does the “self regulating” part come in?

  20. Anonymous says:

    Neither of these theories are mutually exclusive you know and each are very valid. I see both in action every day in my own child, husband and his father and mother and perhaps my own father. (Me? Naw I have ADHD, which is similar in many ways but I am able to identify correctly emotion and desires unlike my relatives.)

  21. opcws says:

    “So often, we spend more time debunking the fraud and false hope that we spend talking about the real research” – surely that should be “than we spend”, not “that we spend”.

    Interesting stuff, anyway. It’s great to see scientists getting their heads round the causes of a fascinating condition/spectrum of conditions.

  22. Nadreck says:

    Well, speaking from the inside I’d say that pretty much all of the differences can be explained by getting all sensory input at the same priority and with no filtering: the cause related in the second paper. In order to deal with this your personality and mental attribute have to develop in a certain way just as neurotypicals have to develop in certain way to deal with being blind and deaf and wrapped in cotton-batten. So you need to have a lot of concentration and willpower because you need to consciously push aside all of the unimportant stuff, such as the luminous patterns of the dust in the air, every second of every day. Hence you are “off in your own little world” and “stubborn”. You need to develop a good memory and it’s a good idea to always put down each item of your stuff in precisely the same place as that’s a lot easier and faster to remember where it is than trying to fish it out of the sea of chaos by looking for it. Hence you are “obsessive”.

    Society also reacts in predictable ways towards these differences and you react back. You’re hammered on an hourly basis for not having a perfect, instant, effortless grasp of things like body language; which is unlikely as you don’t know which tiny percentage of the motions and patterns in people’s bodies the neurotypicals can see let alone zero in on. So if someone seems to have less of a perfect skill level in something than you, say they read slower than 15 sec per page (parallel vs. serial character processing), you hammer back as you’ve been taught to. Hence you are ‘unsociable” as you act the same as everyone else in society does.

    I regard most of the other things that people regard as stereotypically “autistic” as unrelated conditions that make the autism stand out. If you have a low IQ then you don’t have the intellect to consciously figure out what sensory input is important. If you’re hyperactive then you’ll do twice as many odd things an hour as the phlegmatic. Are there causative relations between autism and things such as low IQ or lack of language skills? There’s no creditable research on this either way but I’d say not. Generally all deviations from statistically normal behaviour are lazily regarded as being caused by the most outstanding deviation present. So if you draw people’s attention by being really blonde and then turn out to be a bit thick then you’re dumb because you’re blonde. Same “logic” at work here.

    • Anonymous says:

      “Are there causative relations between autism and things such as low IQ or lack of language skills? There’s no creditable research on this either way but I’d say not. Generally all deviations from statistically normal behaviour are lazily regarded as being caused by the most outstanding deviation present. So if you draw people’s attention by being really blonde and then turn out to be a bit thick then you’re dumb because you’re blonde. Same “logic” at work here.”
      Remember that one of the three areas of impairment required to receive an autism diagnosis is language delay. At some point in early childhood when you were supposed to be talking, you weren’t. If your first words, first sentences, happened at the same timeline as typical kids, you don’t have autism, you have Asperger Syndrome. If you learned to talk at 3, it is still a language delay. Many others, however, never learn to speak, and many of those individuals do not learn an alternative communication system. These individuals are trapped and often display aggressive and/or self-injurious behaviors out of frustration because they cannot get their basic needs met. I believe these lower-functioning individuals must be considered differently than higher-functioning individuals like the eloquent Nadreck.

    • Jack says:

      You actually sound more aware and conscious of what you are dealing with than the majority of those diagnoses with Autism I have known.

      • Nadreck says:

        It’s due to the sheer dumb luck of also having a high-genius level IQ. See the previous Boing-Boing article and posts about the articulate autistic guy being an autistic lobbyist in DC.

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