What's it like to be autistic?

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Two days ago, someone on another forum that I participate in asked "What's it like to be autistic?"

This thread is at: What's it like to be autistic? in the JREF Forums.

I've been learning about autism for several years, and have recently been coming to terms with Asperger's, so I thought I'd make some posts. As usual, I've gotten a bit obsessive about it, have made several posts, and am planning on several more. I've gotten some positive feedback there, but would love to hear what people here think of what I've been saying. I hope I've gotten most of it right.

I'm planning on posting my posts in the series here once I make them there. I'm quoting my posts in full since it is possible that some or all of the posts there could be moved around.

Although I've been looking into autism for several years, it was only a few months ago that I concluded that I've got Asperger's, which is on the autism spectrum.

One site that I have found very helpful and eye-opening is WrongPlanet at

http://www.wrongplanet.net/forums.html.

Wrong Planet is a site for people with autism or Asperger's (aspies), their parents, partners, and friends. The name suggests that autists and aspies feel as though we are on the wrong planet, surrounded by people who are different and who have their own inscrutable expectations and patterns of behavior.

There are a few threads that I can recommend to get started:

A cartoon introduction to Asperger's:

http://www.wrongplanet.net/postt112787.html

The Autism Social Rule Book thread:

http://www.wrongplanet.net/postt131296.html

You might be an aspie if... :

http://www.wrongplanet.net/postt2614.html

If you want to take some of the on-line tests related to autism:

http://www.wrongplanet.net/postt113459.html

I think many would find the Aspie Quiz interesting:

http://www.rdos.net/eng/Aspie-quiz.php

There are many other interesting and sometimes heartbreaking threads on that forum. There are subforums for love and dating, parents, kids, teens, various interests, etc.

Asperger's is considered as being on the Autism spectrum, so everyone with Asperger's is also autistic.

In fact, the next version of the DSM-V will likely be removing Asperger's as a distinct syndrome and letting it be subsumed into the Autism spectrum.

Asperger's is prevalent among those of us who are nerds (including engineers and software developers).

There are high-functioning people with Asperger's and low-functioning people with Asperger's.

There are high-functioning people with non-Asperger's autism and there are low-functioning people with non-Asperger's autism.

Asperger's is just one of the syndromes that are on the Autism spectrum that affects many high-functioning people.

I've recently read two books on autism that I very much enjoyed.

look me in the eye - my life with asperger's, by John Elder Robinson, is an autobiographic account of a guy with Asperger's who grew up without an diagnosis. It is quite engaging and often, quite funny. He dropped out of high school, ended up working on sound effects for bands and some very high-end sound systems, was hired by Kiss to develop Cool Things for them, including some guitars that could only be loved by pyromaniacs (i.e. most of us). His younger brother is the guy who wrote Running With Scissors.

the curious incident of the dog in the night-time, by Mark Haddon, is a novel in which the narrator is a boy with autism who decides to solve a murder, inspired by the example of Sherlock Holmes. The author, who is not autistic but who spent time when younger with several people who are, did a superb job at giving his narrator just the right words for someone with autism. I enjoyed it very much and was tremendously impressed.

There is a great British television series, Wire in the Blood, in which the main character is professor who is supposed to teach forensic psychology but who spends most of his time helping the police with cases. The main character also has Asperger's.

I have watched the entire series several times over the past few years, fascinated by the forensic psychologist. I remember the first time that I watched the series. I kept feeling like I was watching myself on the screen when I watched him. It wasn't until a few seasons into the series that someone mentions to someone else that he has Asperger's. Watching this scene a few months ago was the trigger for my seriously investigating whether I might have Asperger's.

By the way, the actor who plays the aspergic forensic psychologist did a superb job - it is well worth watching him with care if you want to get an idea of what Asperger's is like for many of us.

Just a word of warning - some of the murders in the series are rather nasty.

There is a great poster that was made by Norma Desmond. It contains a picture that she took of her 9-year-old son with Asperger's:

http://www.flickr.com/photos/dramaqu...n/photostream/

The following is a post that she made on Wrong Planet about this poster:

Her post was in response to some posts made in this thread on Wrong Planet:

http://www.wrongplanet.net/postt71507.html

Being at leisure on a lazy Sunday, I'm going to try to write some posts that are more than links to work by others.

As I mentioned, I've been quite interested in autism for several years for a variety of reasons, including research for some fiction I'm writing. I saw quite a bit of myself in descriptions of autists, especially of aspergics, that I read about and saw on video or in movies.

I am saying this not to claim any expertise - I have none - but to explain that it will probably be very difficult for me to provide citations when I'm asked for them. I've been like a vacuum cleaner sweeping through a hotel, not keeping track of where each bit came from.

I was surprised when I first spent time on Wrong Planet at how opinions are among autists on whether autism is a disease that should be cured or a different way of being wired that provides benefits and deficits that should be accepted and accomodated, with research aiming at improving the lives of autists.

Put more simply, we are broken and need to be fixed versus we are different and some of us need help.

This debate is complicated by the fact that there are several disorders/syndromes on the autism 'spectrum' and autists differ wildly in whether we can thrive at work or not work at all, live independently or need round-the-clock care, are brilliant in several regards or are severely ret*d, enjoy our lives or yearn for an end to it all.

I have a problem with the term 'autism spectrum', for it suggests that there is a progression of some property from one end of the spectrum to the other. This really doesn't seem to be the case. Asperger's is usually placed at the 'high' end of the spectrum, but what does that mean?

One characteristic of Asperger's is that it doesn't involve retardation - if you are ret*d, you don't have Asperger's. Well, there are a great many non-Aspergic autistics who are not ret*d either - in what sense are they 'lower' than aspergics?

In fact, in terms of ability to work, live independently, be brilliant or creative, be happy, and many other measures, you can range anywhere from high to low on each of these measures almost without regard for where your syndrome(s) fall on the spectrum.

In other words, the autism spectrum is more of a many-dimensional space in which there are many clusters of people-points. Some of these clusters have names, some are dense, some are diffuse, and there are many points that don't fit into the clusters very well.

Every generalization about autistics that I've heard is wrong except for one - autists are different from neurotypicals. A neurotypical is a person with a 'typical' neurology - many will use the phrase 'normal person', thereby incurring the wrath of must autists. You see, if you are 'normal', and we are different from you, then we must be 'abnormal' - not a very pleasant place to be. We find 'typical' and 'atypical' both more accurate and less wounding.

Autistics seem to be wired differently from neurotypicals. That there appears to be signficant structural differences between the brains of autistics and neurotypicals (stuff for a future post) suggests to many of us that a 'cure' - something that would make an autistic neurotypical - even if desireable, would be unlikely to be achievable given our state of knowledge and technology.

I fall into the camp that finds too much of value in autism to seek a cure for it, though I do very much hope we will find ways of reducing the consequences for the many deficits that afflict autists in various combinations.

There are competing advocacy groups for autism. One aims at a cure, another aims at self-advocacy. Flame wars are not restricted to JREF, I assure you.

I will post more on various aspects of autism as I understand it, including some real answers as to what it is like to be autistic.


First, however, I'll leave you with a few views (each but the last few being held by a large number of autistics) of what some of think of autism:

* autism is a disease that makes life unbearable and needs to be cured
* autism is a disorder or syndrome that may offer some benefits but that also can make life very, very difficult
* autism is a different way of being wired that is different from, but neither better nor worse overall, than being neurotypical
* autism is a better way of being wired that gives autistics distinct advantages over neurotypicals, albeit with some deficits,
* autism is the next stage of evolution - poor homo sapiens!
* autists are descendants of aliens

I can hold the views of the second, third, or fourth bullets, depending upon the day.

I sincerely hope I haven't mucked up the following too badly.

The neurons in the cortex of the human brain are organized into cortical columns - narrow columns of neurons that extend from the surface of the brain inwards a bit. The cells within each column are fairly well interconnected, but there is significantly less interconnection between the cells in one column and an adjacent column.

At the inner end of each cortical column are connections with remote neurons.

Each cortical column appears to act as a processing unit, able to deal with some aspect of a processing task.

It is conjectured, and I believe there is some evidence to support this conjecture, that the brains of at least many autists contain signficantly more cortical columns than do the brains of neurotypicals. The cortical columns of these autists are narrower than is typical. The cortical columns of these autists are also not as richly interconnected with remote areas of the brain.

I think that this difference holds for aspergics and some other autistics, but my memory is quite fuzzy on this aspect. I'm sorry.

If there is such a difference, it could account for some interesting traits of many autists.

Many autists, especially aspergics, are known for being very detail-oriented, for taking longer than is typical to integrate information from remote parts of the brain, for often having a distinctive speech pattern in which some words (e.g. nouns) seem to lag a bit (nouns are retrieved separately, I understand), and for often having difficulty in multitasking and context-switching. We often think very deeply and with great focus, and interruptions or distractions can utterly ruin our day.

I find all of this fascinating, but, then, I would.

While I don't think that any genetic markers for autism have been found, there is some statistical evidence that there is a genetic predisposition towards autism, and it tends to run in families.

It is also thought that there may be in utero and other environmental contributors to autism.

As usual, life can be complicated.

One area of ongoing research is in the area of genetic markers for autism. While some hope that this could facilitate the early detection of, accomodation of, and treatment of some aspects of autism, others fear that genetic tests could be used to abort fetuses that are likely to be autistic.

As I said, complicated.

I have never seen it, though I have seen it advertised, I will have to take a look.

Thanks for the hint

[n.b. One of my cats got banished from my lap while I was typing this post. I had nearly finished it when she stretched (she likes to lay on the keyboard to absorb my laptop's heat) and erased the message, just after I'd copied some text to insert. I can't stay mad, of course. I was able to reconstruct the post, pretty much word for word.]

Many autists, especially aspies, have one or more special interests that can be quite obsessive. Some last for life while others come and go.

My special interests include designing new algorithms for challenging problems, ancient Greek history, the music of Bach, cats, artificial intelligence, glass, the history of mathematics, several sciences, and, of course, autism.

Several autists with special interests have made comments suggesting that they feel like fairly passive observers, not quite in control of what their interests are or how long they will last, comments similar to:

* I really like X, it has been an interest for years, but I have a feeling that it will go away soon. That is too bad, because I really like X.
* I think a new interest will be starting up soon. I suspect it may be X or Y, but I don't have a clue which will be the one.

Here are a few quotes from users on Wrong Planet:

Now, most people have interests and many are obsessed by them, at least for a time, but the special interests that many autists have is distinguished by the way in which a special interest can be totally consuming and obsessive, often without rhyme or reason, and sometimes in spite of the fact that the person never ends up understanding the domain of the obsession.

For example, someone has been obsessed for years with a particular catalog of electronic parts, decades out of date, without understanding a thing about electronics. He can memorize resistor codes without knowing what a resistor is, part numbers, prices, etc. He is hand-typing the HTML that will allow him to put the entire catalog on the internet.

There is often an unusual interest in schedules, timelines, maps, etc.

Some people with special interests are collectors while others merely aim at understanding everything about an interest. When I say 'everything', I mean everything - memorizing timetables, memorizing dialog, knowing everything about the second cousin of the person who designed the costumes for a movie.

A great many autists/aspies have special interests in Asperger's, autism, the brain, neuroanatomy, psychology, etc.

Here are a few of the special interests that I have encountered in posts by autists:

* the book A Boy and His Dog
* learning Japanese
* lesbian romance novels
* biochemistry
* time travel
* bus schedules
* psychopharmacology
* learning Old Norse/Icelandic
* Billy Idol
* Vincent van Gogh
* building a Tesla coil
* programming in Python
* maps and building plans
* vacuum tubes
* building an EMP generator
* meteorology and thunderstorms
* the show Burn Notice
* detecting coronal mass ejections from the sun
* pigs
* train schedules
* Batman and main archnemesis, The Joker
* Legos
* baby slings
* elephants
* abandoned places
* extreme frugality and one-room living
* the British rock band Travis and Italian classical musician Ludovico Einaudi
* 20th century continental philosophy
* the eagle hunters of Mongolia
* gas masks
* shiny things
* thunder and lightning
* paradox
* redwood trees
* quantum field theory
* dentistry
* dolphin training (but has poor motor skills and is afraid of water)
* meerkats
* countless video games
* languages - many have learned several languages and have long lists of languages they want to learn
* "Playing piano. Seeing how I don't own or have access to one, I indulge myself by thinking about it."
* serial killers, especially six specific ones
* organic fair-trade coffee
* "G.I. Joes (not just playing with them but organizing them into squads with organizational charts and so on)"
* song lyrics
* the British royal family
* cichlids
* ukulele
* making sock monkeys
* pine cones
* lichen and moss
* horses
* pokemon
* Roger Bannister
* powerchairs
* vintage TV sets
* the Weight Watchers Points system
* supervolcanoes
* moths
* sparrows
* ravens
* the French comic series Asterix
* patterns and shapes everywhere - "get inebriated by them"
* marbles
* "Rugby league - westerrn suburbs magpies circa early 1970's under the coaching of Roy Masters"

I think that is enough to get the idea. Pretty much anything and everything is a candidate.

One final note for now - anything which interrupts or distracts us from engaging in a special interest is among the worst things in the universe.

Last edited by AlanTuring on 05 Sep 2011, 3:54 pm, edited 1 time in total.

Thanks!

I've been gathering thoughts and writing down my own traits for a few months, and then someone asks the right question. I'm all aquiver.

I'm hoping to get in some posts on comorbidity, stimming, and my sensory experiences.

You remind me a lot of myself.

Some autists have difficulty looking at people's eyes at times (or all of the time); others don't. I've noticed that I often don't look at people's eyes very much, so I've worked hard to do it more. It doesn't usually bother me as much as it used to, but I noticed recently when I simply will not look at someone's eyes. I had to go to a meeting in which an executive spoke for a few hours. I didn't like what he was saying, how he said it, or why he was saying it. I felt manipulated and subjected to power games. People doing these things often use their gaze to intimidate and put people in 'their place'. I looked at his face perhaps 20 seconds out of a few hours.

I, too, can read people's moods and expressions fairly well; at least, I think I can. I don't act on them well. Sometimes I miss signals (that the topic is old, that I'm boring them, that what I said is disturbing), but sometimes I register the signal and plow ahead.

I encourage you to take some of the on-line screening tests and see how you score. I found the questions themselves fascinating. In an early post in this thread, I gave some links to a thread on tests and specifically mentioned the Aspie Quiz. I would suggest this as a starting point. If I remember correctly, it has about 150 statements and asks you to choose, for each, one of four reactions regarding how well each statement fits you. It took me about 25 minutes and it provides a great deal of information.

I hope you thrive.

The Autism Spectrum is a collection of syndromes and disorders. While there is broad agreement on including classic autism, Asperger's, and PPD-NOS in the Spectrum, several other syndromes and disorders are included by various groups, though without concensus.

The Autism Spectrum Disorders (ASD) include:

* Classic Autism
* Asperger's Syndrome (AS)
* Pervasive Development Disorder Not Otherwise Specified (PPD-NOS), sometimes known as 'atypical autism'
* Rett Syndrome
* Childhood Disintigrative Disorder
* Pervasive Developmental Disorders
* Pathological Demand Avoidance Syndrome

Another condition that has characteristics similar to autism but is thought by many not to be autism is Broad Autism Phenotype (BAP).

A 'comorbid condition' is a condition that often occurs with another condition.

For example, some of the conditions that are comorbid with Asperger's are:

* Obsessive-Compulsive Disorder (OCD)
* Anxiety
* Depression
* Sensor Processing Disorders (SPD)
* Central Auditory Processing Disorder (CAPD)
* Attention Deficit Disorder (ADD)
* Attention Deficit Hyperactive Disorder (ADHD)
* Learning Disabilities
* Seizure Disorders
* Schizophrenia
* Aggression
* Phobias

This list is far from complete, and some additional information related to the degree of comorbidity would be helpful.

For example, I remember reading (somewhere!) that Asperger's was comorbid with Obsessive-Compulsive Disorder, anxiety, and depression in an estimated 65% of the cases - about 65% of the people with Asperger's had these other conditions.

The reason that this stuck with me is that I've been diagnosed as having OCD, General Anxiety Disorder, and Dysthemia (a long-term form of depression).

There is a great deal of information on the internet on the comorbidity of Autism Spectrum Disorders and various other conditions.

Here is a Wikipedia article on conditions comorbid with autism:

http://en.wikipedia.org/wiki/Conditi...trum_disorders

While there is no cure for Asperger's or autism, it is possible to treat some of the symptoms with therapy and/or medication (e.g. OCD, anxiety, depression). I'd be a wreck without antidepressants. I'm doing fairly well with them.

'Stimming' is short for 'self-stimulation' and is a repetitive bodily movement or other deliberate sensory experience.

Many autists and aspergics stim to comfort ourselves.

Some typical stims are:

* Rocking back and forth
* Jiggling one or more legs
* Hand flapping - either flexing the wrist or along the axis of the forearm
* Drumming fingers on the body
* Spinning an object (e.g. pen, knife)
* Staring at flowing water
* Making a billiard ball bounce around a billiards table while writing on it (e.g. Mozart composing at home in Amadeus)

I am a leg jiggler, love to jiggle both legs with my hands resting on my thighs, palms towards the middle so that all five finger pairs touch in synchrony.

I am also an axial hand flapper, love to watch spinning things (pen on pad while thinking of what to write, knife on table when out to eat), love to stare at flowing water, and absolutely love to watch windmills.

I have some thoughts as to why we stim and why stimming can comfort us.

In a near-future post, I'll talk about the sensory world of autists and aspergics, and about sensory overload, but here's a little preview.

Many autists experience the world in a great deal of detail, too much to keep track of, and far too much to model. We tend to have difficulty seeing the forest for the leaves. We often don't feel in control over our interactions with the world and are easily overwhelmed.

I think that one effect of stimming is that, by causing a rhythmic, predictable sensory input, we are exercising some control over the world, providing a sensory anchor on which we can try to frame our sensory experiences, and, to some degree, drowning out the Niagara of sensation that we often experience.

Rather than make lists of how many autists/aspergics experience the world, I'm going to offer up some of my traits and experiences. Most of them I've heard in others' descriptions, but a few may be ideosyncracies and unrelated to my Asperger's. I'll put an asterisk after these possible ideosyncracies.

I've been building up a list of personal traits for a few months. It is far from complete, but I'll offer up what I've got now. Not all of these may be related to autism or Asperger's.

Light

* I hate bright light, sunlight
* I hate overhead lights, especially flourescents
* Car headlights, whether oncoming or behind me, can cause physical pain, and I find the newer blueish headlights much more painful than the yellowish ones
* I hate pinpoint lighting and prefer very diffused lighting
* I hate flashing, blinking, or strobe lights
* I am unable to concentrate and get angry when a light is moving (e.g. a light focused on my table moving due to vibration)
* I love a very deep blue light *
* I love to be in rooms that are dim with pools of soft light from stained-glass lamps. It is very important that the lamps have incadescent lightbulbs, not complact florescent. I have at least one stained glass lamp in each room of my apartment and never willingly have any overhead lights on.

Sound

* I hate loud noise, specially the bass from someone else's stereo or TV
* I am easily startled by noises
* I can't handle clocks ticking or dripping faucets
* Humming equipment can destroy me
* I really like having some white noise (produced by fans or ventilation) at all times

Hearing

* I have fairly good hearing in general
* I have always had extreme difficulty in understanding speech against background noise - this is probably due to Central Auditory Processing Disorder (CAPD)
* I have never been able to understand the lyrics of most rock songs
* My brain is very creative - when I can't understand spoken or sung words, it just makes things up. I often repeat what I've heard back to someone when it doesn't make much sense (or even when it does), and it often has little to do with what they said. *

Touch

* I am uncomfortable being touched when I don't expect it
* Clothing must not have labels. I love the newer t-shirts and underwear that print information on the cloth rather than attach labels. If there is a label on any of my clothing, I will immediately cut it off.
* Some fabrics have a wonderful feel to them, while others irritate the hell out of me. It takes me a long time to get rid of the sensation of having been touched by an unpleasant fabric. Sheets, blankets, pillowcases, shirts, pants, hats, gloves - anything that will come into contact with my skin must be comfortable or the day is ruined.
* Nothing metal may touch my skin. I've been told I may have a nickel sensitivity. I've had skin redden and blister when I've tried to wear a ring, or when the plastic covering on my glasses temples wore through and exposed some metal. It burns! *

Environment

* I must have circulating air at all times. I can't stand being in an elevator, car, or other place where the air doesn't move
* I must hear the air circulating as well as feel it.
* The temperature and humidity must be in a narrow range
* I'm fairly claustrophobic. A recent MRI was a panic-causing experience.
* I like rooms with tall ceilings and dim lighting *
* I usually keep shades pulled so that I don't get any direct sunlight *
* In addition to lots of stained glass lamps, I have a fake fireplace in my living room that is fairly believable and very comforting. It is always on. *
* I must not be able to see many people, or hear them, or be physically close to them. I often sit in the front row of a group of people in a meeting so that I can't see the rest of them. While at my favorite local restaurant yesterday, a group of people from a nearby table stood up to leave and talked for a few minutes feet from where I was (by myself in a 2-person booth against a wall). The panic was intense, and I nearly jumped up and ran from the restaurant. After they left, it took me a few hours to recover my peace of mind.

Order

* My apartment appears chaotic (and in need of regular thorough cleaning) to most people, but there are regions of strict order amidst the chaos.
* I may have limited realms of control, but I guard those with care.
* Everything has its place. That many things may not be in their place is an annoyance, varying in degree depending upon what they are.
* Anyone moving things or putting things in the wrong place drives me crazy and into a fit of straightening up.
* Books, pads of paper, and writing utensils must be unblemished. A drop of water on a book or pad will make me unable to keep it or use it. Any writing in a book makes it unreadable to me. Chipped dishes or CDs with an audible blemish are just begging to be binned. *
* Programming code must be laid out just so or it is offensive to me and nearly unreadable. This isn't simply being picky - I have found that if code is laid out in my way, the form becomes transparent, and I can detect errors much more quickly and accurately. Lay it out differently, and it becomes opaque to my error detectors.
* While I am in many ways an anarchist wannabe, I have a frightfully strict lawful side (in certain areas). For example, I try to be a good driver and fully expect others to do the same. My pet peeve for the past several years has been that more and more people don't bother to signal when they are going to make a turn or change lanes. This drives me batty. I attempt to communicate my displeasure, safely, with my horn and fingers. My efforts are rarely appreciated. *

Aesthetics

* I abhor and can't bear to look at horrible web pages, flashy garish things, or horridly bright and florescent colors.
* I love things simple, sparse, and elegant
* I love spinning objects, especially windmills
* I love the sound and appearance of gently flowing water
* I love economy, balance, minimalism, suggestion, and wu-wei

That is enough for now. There are other aspects of my sensory experience, but this covers much of it.

I'll post soon on other traits.

I've mentioned that many autists experience sensory overload. We experience too much, too richly, perhaps in too fine-grained a manner, and don't appear to be able to keep up with a flood of sensory inputs.

This may be related to the conjecture that many autists and aspergics have far more and narrower cortical columns in our brains than do neurotypicals. We appear to have finer-grained processing for detail with a corresponding decrease in interconnection with other areas of the brain, slowing down integration and adding a lag (e.g. discernable in some speech, where nouns may be delayed).

One way that we handle this is to attempt to control our environment so that it offers far less sensory stimulation than is common, controlling lighting, noise, avoiding disturbing surfaces, materials, and fabrics, avoiding disturbing smells or adding comforting ones, and avoiding distractions of all kinds.

As I mentioned, many of us use some forms of stimming to add a regular, deliberate, pleasing stimulation to our sensory input. This gives us a sense of control, gives some structure to our sensory experience, and may cover up some distracting things.

When we are exposed to crowds, or social situations, or anything else that may upset us, we often experience some form of shutting down. This could be an outburst, which we refer to as 'melt-downs', in which we lose control, can shout, stomp off, cry, whatever. Sometimes a shutdown may be experience by others as our going silent, or unresponsive, or hiding somewhere.

The last thing that most of us want when we melt down or shut down is someone coming up to us, asking what is wrong, touching us, etc.

However, sometimes a firm, body restricting hug is exactly what we need. Many autists enjoy and are comforted by the sensation of being held down and restricted by a heavy blanket, comforter, etc. Some autists who are having a meltdown can be helped by being firmly hugged and held by one or more people. Since this can be exactly the wrong way of calming some autists down, however, it is important to know how a person wants to be treated when this happens. Some will be able to tell you precisely what they need.

Just as many autists try to reduce sensory stimulation, some others find that they need a certain amount of sensory stimulation (of certain types) to be comfortable.

I need background sound of a white-noise type, air flow (but not too much), etc. Some people need to feel the wind on their bodies, or grass, or ...

I think that while most neurotypicals have their sensory preferences, they are usually not as narrow and as strong as those held by most autists.