This page contains a series of examples of persons with autism. You will get different glimpses of into what it is like to be autistic, high functioning and low. These vignettes have been copied and condensed from books and websites in which people give their own story about being autistic, or the story of a child who has autism. I apologize in advance if I have screwed up the attribution.
Isabel
Roy Grinker does a wonderful job of describing his daughter Isabel in his book Unstrange Minds. It is terrific example of the struggles one person with autism, and her family, faces on a daily basis.
Isabel displays many of the characteristics of someone under intense stress. For instance, Grinker describes how after starting kindergarten at a special needs school in which the environment was chaotic, Isabel began to have night terrors. She compulsively tapped her fingers and knuckles on walls, tables, chairs, and she wouldn’t walk without dragging her toes. Her child psychiatrist, after reading the psychologist’s report on the classroom environment, said that she is simply stressed. During the Christmas break, Grinker took the family to Florida, and over a period of two weeks all of the symptoms of her anxiety abated. Grinker realized that Isabel had been reacting to the extraordinary level of disorder and expressed emotion in the contained classroom. Her behaviors that were above and beyond her normal autistic behaviors were derived from a greater than normal level of stressors in her life.
Isabel also shows characteristics of someone who is calmed by beauty and symmetry, something that I have suggested. Grinker recounts how Isabel used to linger outside the National Museum of American History, where her classroom was located, exploring the trees and gardens. He describes how Isabel became obsessed with a book called Linnea in Monet’s Garden which involved a beautiful Japanese Bridge over a pond that Monet painted. Eventually, Grinker took Isabel to Paris to see the garden. When Isabel finally reached the Japanese Bridge, she was more serene than Grinker had ever seen. She was mesmerized by the beauty of the scene.
Grinker describes in detail Isabel’s problems with sensory stimuli. He recounts how by the time she started elementary school, Isabel had become extremely sensitive to a variety of different nonmusical sounds, including certain speech rhythms. These sensitivities have continued throughout her life. She reacts with defensiveness, covering her ears, if you speak with a rhythm, an intonation, or a volume or pitch she doesn’t like, and she covers her ears when a toilet flushes, when a baby cries, or when she hears a word she doesn’t like. She hates certain sounds, such as a baby crying or the alarm telling you your seatbelt has not been fastened, or the bathtub draining. Isabel would throw tantrums when the bell rang at school to signal the end of class.
Isabel hated the sound of Grinker clearing his throat. She was also sensitive to words associated with bathing, including bath, or shower or shampoo. Grinker went to a child psychiatrist to talk about Isabel’s sensitivity. The psychiatrist told Grinker to play a game. He was to give Isabel one point for every time she can hear the challenging words without getting agitated, and when she gets 100 points, she gets something she wants. So Grinker explained the game to Isabel and told her that when she got 100 points she could visit the new baby panda bear at the National Zoo. Within just a few hours, she was begging Grinker to clear his throat and to say bath and shower. She got her prize and the game was over. Isabel still hates those sounds but no longer reacts defensively. This is an example of progressive desensitization.
Isabel also hates the happy birthday song. On her 12th birthday, for instance, Grinker took a picture of Isabel that he showed around. It showed her sitting in front of the chocolate cake with a mildly happy look on her face but she’s stuffed her forefingers in her ears to block out the sound. This is a common posture in autism, not only when people feel overwhelmed by sound, but also when they experience emotions like happiness, anger and surprise.
Grinker described many other characteristics about Isabel. Isabel is obsessed with animals, particularly african ones. Isabel hated things that vibrated. In school, Isabel learned how to play the cello. Despite her aversion to vibration, she enjoyed feeling it against her legs (control). She didn’t like pressure on her fingertips so much that she refused to even try to learn to button her clothing. This got in the way of her school work. She didn’t want to use her fingertips to hold a pen or a pencil, so she couldn’t get a correct grip. It is a struggle of getting Isabel to eat foods other than hot dogs and pizza.
Grinker remarked the Isabel was always more open and conversational when they were walking for no reason he could identify.
Jessy
This information came from Temple Grandin’s book Thinking in Pictures. This is a description of Clara Park’s daughter, Jessy. Ms. Park has written several books about Jessy, including The Siege and Exiting Nirvana.
We live in the midst of that hyperactivity to sound that so many observers have noted. Jessy has learned to control the intensity of her reaction to the clicks and buzzes and hums with which the 20th century surrounds us. But she still notices them. “Guess what! The refrigerator turned on while the door was open! A loud click!” If Jessy is tuned to a sound, it pierces though to her through a conversation or distance. She hears the sound of the refrigerator – or its silence – two rooms away. Some sounds fill her with mysterious delight. Other sounds and phrases trigger an equally mysterious distress that seems, in its devastating suddenness, almost like an allergic reaction of the psychi.
Nearly 20 years old, Jessy made a five page list of things that regularly distress her. She headed it discouragements, as she did not know the word stressor then. Stressors in autism are highly idiosyncratic. If a stressor, such as a question most people would consider innocuous, goes badly, the scene becomes terrifying, as Jessy cries and shrieks out bizarre and piercing verbalizations that are audible through several closed doors. “Wee-alo, wee-alo” she screams, “La la” her face distorted, her heart pounding, every muscle in her body tense, her mouth open so wide we see her flattened tongue. Of the 22 stressors on Jessy’s list, the most common is when things are out of place. Recently, Jessy found a sharp knife in the dishwasher which her friend put in mistakenly. Jessy threw it. It is these overreactions to stress, rather than her remaining cognitive and communicative deficits, that are now the greatest difficulty with her.
Jessy is discouraged by people sneezing. Autistic people may be hypersensitive to certain sounds, such as a sneeze. Last night at the hotel, Jessy could hear things that her mother could not, a groaning faucet for instance. But there can be more to it than sound. A sneeze is unexpected, and an unexpected sound is bad enough, but the sneeze is worse, because it suggests the possibility of a cold.
Amanda Beggs
These are the words I transcribed from a home video made by Amanda Beggs that she posted on YouTube. A link to the video is up and left. I strongly encourage you to watch it. My comments to myself are in parents and italics.
My language is not about designing words or even visual symbols for people to interpret. My language is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings. In this part of the video, the water doesn’t mean anything. I am just interacting with the water as the water interacts with me (for an autistic, they experience the world so rawly that their perception involves a constant, involuntary interaction, which feels better when they have some control). Far from being purposeless, the way I move is an ongoing response to what is around me (external control – reactive to environment). Ironically, the way I move when responding to everything around me is described as being in a world of my own. Whereas if I interact with a much more limited set of responses (if engage in filtering), and only react to a much more limited part of my surroundings, people claim that I am opening up to true interaction with the world. They judge my existence, awareness and personality on which of a tiny part of the world I appear to be reacting to. The way I naturally think and respond to things looks and feels so different from standard concepts or even visualization that some people do not consider it thought at all but it is a way of thinking in its own right. However, the thinking of people like me is only taken seriously if we learn your language, no matter how we previously thought or interacted. (communicating with the sensory world, which is much more fulfilling that people)
As you heard, I can sing along with what is around me (resonance). It is only when I type something that is in your language that you refer to me as having communication. I smell things, I listen to things, I feel things, I taste things (sensory world dominates). It is not enough to look and listen and taste and feel (this is her communication – to objects in the world. Motivation programs only extends to non-human sensory objects). I have to do those to the right things such as look at books and fail to do them to the wrong things or else people doubt that I am a thinking being and since their definition of thought defined their definition of personhood so ridiculously much they doubt that I am a real person as well. I would like to honestly know how many people if you met me on the street would believe I wrote this. I find it very interesting by the way that failure to learn your language is seen as a deficit but failure to learn my language is seen as so natural that people like me are officially described as mysterious and puzzling rather than anyone admitting that it is themselves who are confused, not autistic people or other cognitively disabled people who are inherently confusing. We are even viewed as non-communicative if we don’t speak the standard language but other people are not considered non-communicative if they are so oblivious to our own languages as to believe they don’t exist. In the end I want you to know this has not been intended as a voyeuristic freak show where you get to look at the bizarre workings of the autistic mind. It is meant as a strong statement on the existence and value of many different kinds of thinking and interaction in a world in which how close you can appear to a specific one of them determines whether you are seen as a real person or an adult or an intelligent person. And in a world in which those determine whether you have any rights there are people being tortured, people dying because they are considered non persons because their kind of thought is so unusual as to not be considered thought at all. Only when the many shapes of personhood are recognized will justice and human rights be possible. Amanda Baggs.
(She is intensely communicating with the world around her through her sensations. The people are much less interesting to her than the things around her, because of their limited potential impact upon her. There is so much richness in the world of sensory overload that the rest of the world, the subtleties of normal human existence, often seem trivial. She talks of resonance and other sensory experiences that sound a lot like Carol North’s interference patterns)
Alex Michaels - Author of Postcards from my Mind
Alex is the author of a website on Asperger's Syndome called Postcards from my Mind, on which, among other things, he provides perspectives on what it is like to be on the autism spectrum.
Finding the most important piece of information in my sensory world is impossible, because of faulty organizing systems within my brain. There is nothing that say ‘here pay attention to this’, so all information carries the equal weight. Incoming information is chunked together and stored as a whole instead of breaking the information into content and storing the meaning.
Sometimes, when I am tired or my sensory budget is low, I have more difficulty switching between memories and current time.
By the time my brain interprets an internal sensory processing signal correctly (I’m hungry or I need to go to the bathroom), I have very little time to engage in the activity before I urinate in my pants or become cranky from not eating. I have compensated for these difficulties by perseverating on meal times. If I’m hungry, I might talk about it incessantly until I eat. This is a way of reminding myself I am hungry.
Because sensory systems are faulty and many people on the spectrum do not have representation, many children prefer not to play with symbolic toys. How much pleasure would you have if you couldn’t see or comprehend an object as a whole – if biologically you only could comprehend the wheels, a screw, the shiny plastic, the gas hole, etc… as separate pieces. How much fun do you think this miniature car would be? If you roll the wheels back and forth on your arm and it feels good, why wouldn’t you repeat this activity? I saw a rubber wheel massager in the Sharper Image that cost $32.50. When children on the autism spectrum partake in this behavior, it’s called a disorder. When normal adults do it, it’s call stress reduction.
Contrary to every day life, math made sense to me. I understood the numbers the way people understand each other. Numbers have a personality to me. The patterns I instinctually got.
Before neurologically typical people transition, they plan and think about where they are going. They imagine what the place will look like and what they will be doing. In essence, they rehearse. They are priming themselves for the change. This priming is a way of practicing becoming comfortable with events and situations. Before I understood this concept, when I would transition from place to place or activity to activity, it felt very abrupt. Metaphorically, it was as if I were engaged in an activity and someone came along placing me in a satchel and dumping me in another place. Each transition was terrifying, even if the transition was routine and familiar. When I experienced this feeling of terror, I reacted in the fight or flight mode. In modern times, one does not distinguish between ‘this is an emergency’ and ‘I feel uncomfortable’. The feeling is the same regardless of the cause and hence, the reaction is one of survival. Protesting like a soldier in battle, many times I would have a complete meltdown because my anxiety was so high. Because I didn’t have the ability to switch my attention and remember another mental state when I was calmer, the only feeling I knew was terror and it needed to stop immediately. This ‘doom of foreverness’, as I’ve come to coin it, is when I’m in one mental state and I literally cannot remember being in another. I can’t remember that things will be better.
Many students on the autism spectrum have extreme difficulty with attention. In order to attend to certain stimuli, one must concentrate on the particularly relevant stimuli and filter out other irrelevant stimuli. A child on the autism spectrum might have difficulty with memory (what was I looking for again?), sequencing (I looked in one place and now I am done), relevancy (is this an important clue?), or visual over stimulation (there are so many things here, I can’t interpret the information coming in).
Once I am in a different sensory state, either aroused from running on the playground, over stimulating, or feeling a strong emotion, the garage door to my outer brain (new mammalian cortex) is closed an my inner brain (amygdala or emotional brain) is opened. As a child, I operated with two different sets of information, depending upon my state.
When I observe TV or dream something, the feelings I experience are indistinguishable from my real life. As a child, the TV posed a difficult problem. I didn’t understand that what I was watching wasn’t real.
Information can feel like a tidal wave of sensation. I feel okay, and then without warning I am overloaded. Often this occurs when I feel an emotion. If I’m looking at something and I feel happy, the happiness might continue well past the normal stage and become uncomfortable. It’s strange, but one can actually suffer from too much happiness. It is like my body gets out of control and the out of control feeling is what doesn’t feel good.
I constantly seek out movement activity because this is the only time my body felt good. As I grew up, I always sought out vestibular activity, such as horseback riding, skiing, swimming and fencing. A swing is my favorite coping skill, but the majority of time I feel I am going to melt down a swing isn’t present.
Every person on the autism spectrum processes sensations differently. For example, both my friend Stephen and I have problems with noise. Stephen does not like when sounds are too loud and is distracted by music in the background. Background music is extremely helpful to me. I seem to borrow the rhythm of the music and it helps me to focus and organize better. When I’m in a crowded place and don’t hear music, the words just sound like noise. Also, fluorescent lights were an enormous problem – the high pitched unrhythmic frequency of them used to make it virtually impossible for me to concentrate on anything else as they are quite painful. While my processing has improved, I still struggle with things such as the polisher machine at the dentist’s office, blenders, vacuums, ambulance sirens, the fast forward / rewind buttons on the VCR, and the worst – dental floss. The sound dental floss makes, coupled with the feeling, is horrible.
Lindsay
This is a description by an autistic girl named Lindsay of her challenges with conversation. This passage was copied verbatim from Stress and Coping with Autism, a book on the Resources page:
“1. Paying attention to the other person in the first place is difficult enough, and causes enough anxiety, add 2. The stress of me dealing with this onslaught of noise from this strange person, 3. The knowledge that they expect me to be able to understand what they are saying, and 4. The effort to trying to do this, 5. That they figure I am supposed to have thoughts on this… whatever it is, and of course, they are supposed to give THEIR thoughts on the subject, I now have one more thing to add to my list of things I’ve got to do… figure out what their thoughts are on the subject, and then see if I can in any way make that acceptable to me in any way, even though I don’t understand it (understanding it is way too impossible and difficult a concept that I didn’t even bother with it…) and more often than not I cannot. And 6. I am now supposed to EXPRESS my opinions (or pseudo opinions) fluently, coherently and rapidly!! 7. The fact that this is impossible, **PLUS** 8. The expectation/demand that all of this WILL be met, and anything else is unacceptable, and unacceptability is not allowed!!!!! And 9. The entire interaction (which is repeated endlessly throughout the entire encounter) is supposed to take place in a matter of a few seconds!!!!!!”
Jim and G
This narrative is about G and his father, Jim Devine, both of whom suffer from Asperger’s Syndrome. I have copied blurbs from the site. The site is linked at the top left of this page as OASIS, Online Asperger Information and Support.
Jim's Perspective about G:
As mentioned, G is usually good with one or two other people, especially adults, but with a group of kids he tends to go off into a world of his own. He gets distracted or over-stimulated very easily, since he has a hard time filtering out a lot of the stimuli in his environment. He does do well when he's concentrating on a single activity. In trying to deal with all of the stimuli he's bombarded with he tends to over-react, however, to build a wall that's too impervious to stimuli. He is very good at concentrating on something that he's interested in, but finds that he has a hard time paying attention to anything else or making a transition to some new matter (such as going to the bathroom). Not only does G have a hard time listening, but he has a hard time looking at someone when talking to them. He also has some pretty harmless autistic symptoms such as over-sensitivity to the fabric of his clothes, a tendency to hit himself softly (what's called self-stimulation), and a propensity to flap his hands a lot. He's also not as coordinated as most of the kids are at his age. Luckily he doesn't have a single obsession the way many kids with AS do, but instead has a variety of different obsessions, which change often. He has a very active and varied fantasy life which he puts into action in his play; the UCLA folks say that's a very good sign for his prognosis.
G demonstrates many symptoms of sensory defensiveness, which affect his attention, learning, and behavior. His teacher's instructions get lost in competition with a clock ticking, the echo of peers walking and talking in the hall. He is off task and he finds solace in humming or chewing on the end of his pencil, sensory seeking behaviors that help ease the discomfort. Fortunately, he has gym class before lunch. Running bases in gym class gives him a legitimate opportunity for the "heavy work" that his body needs. It sure makes him feel better and prepares him for the biggest challenge of all-eating lunch in the school cafeteria.
Jim's Comments about Himself:
Like G, I am not the type who's totally obsessed with a single interest, excluding other activities in an extremely repetitive way, emphasizing rote more than meaning. I have a bunch of different interests (though maybe the scope is too narrow, since they all tend to be academic or computer-oriented or these days, Asperger-oriented) and I'm extremely interested in the question of "why?" instead of mere description. It's possible that these perception problems are related to my poor memory or not. I really have a hard time remembering things that I can't put into a clear theoretical framework. For example, I can't remember prices at the store. More importantly, I have a hard time remembering people's names, even if I've asked them several times. I can remember someone's name for while and then forget it if I don't see them for awhile. Maybe it's because I get too much stimulus. Or maybe it's simply a bad memory. The latter would fit the fact that many people with AS seem to have extremely good memories (like the guy who knows the train schedules by heart).
I have found (through trial and error) that information written in red ink seems to be easier for me to retain. I am a visual learner and the red ink seems to keep my attention and I focus better. I used a tape recorder, but I still had to write lecture materials in order to better retain the information. As a child, I didn’t really learn to read until I started using my fingers to trace over the letters in the word. When I recall information, I see it. I can remember the location of the information on a page of a book and then am able to remember it. The process of writing the information (I feel the pencil in my hand and the tracing action of writing the words) also helps me retain information. When having to rely on auditory input, I am at a loss.