"You Don't Have Words to Describe What I Experience" - What Does Autism Feel Like?
N. Walker, J. Cantello,, Editors
The sensory experience of individuals with autism based on first hand accounts.
From the Geneva Centre.
The pieces of the autism puzzle are constantly changing as "outsiders" to the autistic experience try to interpret the deficits behaviours and remarkable skills of those "on the inside". Over the past 50 years the "puzzle pieces" have shifted from emotional disturbance to psychosis to a communication disorder to a beahvioural disturbance; from severe mental retardation to a social disorder to a neurological disorder involving movement and sensory disturbance.
Most people now recognize that the puzzle is not of one picture. While it is widely accepted in North America that the symptoms of autism are not caused by a psychosis or emotional withdrawal, all of the other interpretations mentioned above may constitute a part of the disorder. The degree to which an individual is affected by each of these varies greatly from one person to the next.
Of all the theories, research and treatment investigations that have been entertained over the past fifty years the most compelling insights regarding this disorder have often been those provided by individuals with autism. The accounts of remarkable people like Temple Grandin, Donna Williams, Jim Sinclair, Darren White, Sean Barron, Thomas McKean, Georgina Stehli and others have all provided us with eye-opening experiences and explanations for behaviours from a perspective which is often overlooked by those of us trying to help.
Some of the most fascinating insights are the descriptions of sensory perception. Almost every first-hand account has described some distortion of one or more of the sensory channels to the brain - seeing, hearing, smelling, tasting, or feeling. These individuals describe in detail distortions in both extremes of hyper- and hypo-sensitivity which often fluctuated, alternated and changed over time. Temple Grandin's book Emergence: Labelled Autistic, (1986) recounted her sensitivity to touch:
"I ached to be loved-hugged.
At the same time I withdrew from over-touch as from my overweight, overly affectionate, "marshmallow" aunt. Her affection was like being swallowed by a whale. Even being touched by the teacher made me flinch and draw back. Wanting but withdrawing. My brain-damaged nervous system imprisoned me. It was as if a sliding glass door separated me from the world of love and human understanding. There is a balance in teaching the autistic child with the fear of engulfment. Tactile defensiveness behaviour and hypersensitivity are similar. Wool clothing for instance, is still intolerable for me to wear...I dislike nightgowns because the feeling of my legs touching each other is unpleasant."
In Nobody Nowhere, (1992) the recently published autobiography by Donna Williams, the author described the disturbance and eye opening experiences of living with autism. Her hyper-sensory perceptions related to vision and hearing and touch explained the unusual behaviours that defined her autism:
"My bed was also surrounded and totally encased by tiny spots that I called stars, so that it seemed to me I lay in some kind of mystical glass coffin. (I have since learned that they are actually air particles, yet my vision was so hypersensitive that they often became a hypnotic foreground with the rest of "the world" fading away.)"
"I talked compulsively when I was nervous. I also talked to myself sometimes. One reason for this was that I felt so deaf when I said nothing. It was as though my senses only functioned consistently when I moved within my own world and that meant closing others our. Years later I had my hearing tested again. At that time, it was found that my hearing was better than average, and I was able to hear some frequencies that only animals normally hear, The problem with my hearing was obviously one of a fluctuation in the awareness were a puppet, the strings of which were set firmly in the hands of emotional stress."
"I felt that all touching was pain and I was frightened"
Ms. Williams has also been diagnosed with Scotopic Sensitivity Syndrome, a vision disorder defined by Dr. Helen Irlen. Dr. Irlen's work with dyslexic individuals in the 1980's led her to the recognition of a serious problem with visual perception which was mediated by the use of tinted lenses. Donna Williams described her hyper-acute vision which caused her to focus on the minute detail of component parts of what she saw and left her unable to focus on things as a whole. She describes her visual experiences before and after treatment with special coloured lenses call Irlen tints in an article entitled A Sight For Sore Eyes, (1994):
"I put on my glasses. "Your face", I said to Paul, "it's joined together. Your head is joined to your body all at once."
"The room no longer seemed so crowded, overwhelming or bombarding. The overwhelming background noise I had always heard before as foreground; machine sounds in distant rooms, the hum of traffic, the mutter of people talking in the background, were not even apparent."
"Look at the fluffy pink flowers", said Paul. My eyes jumped from the green bits to the pink bits to the earth against a background of meaningless colour, shape and pattern. "Now put on your glasses", ordered Paul. I gasped. The flower had come back together. It had an overall impression and the finite detail of its component bits were now lost in the whole.... Things made sense. All my life I'd been brutally taught how to act as though things made sense but things never did. "My God", I said, "this must be what other people see". This is their world, I thought."
Ms. Williams has questioned how many other people with autism may have an undiagnosed vision disorder. Darren White also described fluctuations of perception in hearing and vision in Autism From the Inside, (1987):
"Sometimes when other kids spoke to me I could scarcely hear them and sometimes they sounded like bullets.","I was often lazy at school because sometimes my ears distorted the teacher's instructions or my eyes blurred to stop me seeing the blackboard properly."
The awareness of auditory sensitivities in autism jumped to the public attention with the
publication of The Sound of A Miracle, (1991). Annabel Stelhi describes her daughters struggle with autism and the surprising benefits brought about by a little know therapy designed to correct hyper-sensitive hearing. Having corrected the intolerance to certain frequencies of sound Mrs. Stelhi recognized other sensory sensitivities related to vision and smell and touch:
,"She saw like an eagle." ,This must have been why she'd been so fascinated by people's hair. "Georgie, I asked, "when you see hair, do you see every strand clearly?" "Yes" she said, "don't you see them that way?"
"You liked the smell of certain foods, and hated the smell of others, Georgie, but what about people? And animals?" "I still have trouble with that", she said. "dogs and cats and smells like deodorant and after-shave lotion. They smell so strong to me I can't stand it, and perfume drives me nuts."
"When I asked her (about touch), she said touching made her feel "funny, although it was much better now; she'd gotten used to it as she got older."
The descriptions provided a logical explanation for many of the unusual behaviours Georgie had demonstrated as a child.
A rare experience known as synaesthesia which is frequently reported by artists and musicians has been described by several people with autism. Synaesthesia is the experience of receiving sensory information through more than one sense when the stimulus would normally be received through only one, (i.e. hearing a specific sound produces a visual perception of a specific colour.) In an article entitled Exploring the Experience of Autism Through First Hand Accounts, (Cesaroni, L, Garber, M., 1991), one individual with autism described the experience as follows: "Sounds are often accompanied by vague sensations of colour, shape texture, movement, scent or flavour. It is as if information was received in several modes even though the signal comes from one source."
The theory of sensory dysfunction as a component of autism is not a new one. This idea has been entertained by several therapists in the past. in 1974, Carl Delacato published The Ultimate Stranger His work with children with autism lead him to a new theory regarding the root of the autistic symptoms. He conceptualized the view of autism as a neurological condition and elaborated that the nature of the brain damage resulted in perceptual dysfunction. He theorized that the five sensory channels were effected by hyper-sensitivity, hypo-sensitivity, or white noise:
"Now I had made a start in understanding these behaviours. These children were not psychotic. They were brain-injured and had severe sensory problems. They could not deal with the stimulation coming into their brains from the outside world. One or more of their intake channels (sight, sound, taste, smell, or feel) was deficient in some way. Their strange repetitive behaviour was their attempt, through much repetitive stimulation, to normalize that channel or channels."
The problems with these channels fell into one of three categories:
1. Hyper: a hair-trigger sensory system that allowed too much of the sensory message into the brain.
2. Hypo: a sluggish sensory system that allowed too little of the sensory message into the brain.
3. White noise: a sensory system that operated so inefficiently that its own operation created an interference or noise in the system."
In Sensory Integration and The Child, (1979), Jean Ayres also described a theoretical perspective of autism as resulting from a difficulty with the modulation and integration of information from the senses. Her work included therapeutic activities designed to desensitize and coordinate the tactile and proprioceptive senses.
A survey of thirty individuals with autism, conducted by the Geneva Centre for Autism, revealed some fascinating descriptions of sensory experiences. Many of these first-hand accounts describe a remarkable parallel to theories outlined by Dr. Delacato nearly twenty years ago. Approximately one half of the respondents were verbal while the other half were nonverbal and used facilitated communication to answer survey questions. The questions were primarily related to the five sensory channels vision, hearing, smell taste and touch.
Respondents were also asked questions regarding memory skills, movement issues, behaviour and relationships. The questionnaire attempted to capture differences in perception as an individual matured from infancy to their present age. This information is not conclusive but offers a range of individual perceptions which may provide greater insight into the experience of autism.
Seventy-seven percent of respondents indicated a sensitivity to touch. The explanations of how touch affected each individual varied considerably, sometimes causing completely opposite experiences. However, several common themes emerged. Most of the adult respondents indicated that they had been much more sensitive to being touched when they were younger and that a gradual desensitization had taken place as they matured:
"As a young child I hated people touching me it had left me weak. I though I would break."
Many parents have also noted this change as their children grew older. Hugs and physical closeness became more easily tolerated and sometimes even initiated by the individual.
Hyper-sensitivity was the most common theme. This included both positive and negative experiences. The negative experiences involved an intolerance to certain textures and physical sensations, similar to those described by Temple Grandin in Emergence: Labelled Autistic. An interesting note was the sensation of water hitting the skin:
"I hate touching the water from the sink it comes out so fast and feels funny. I want to fill the sink with water and then wash my hands."
"I like a bath, showers hurt my body"
The hyper-sensitivity sometimes created a fascination with textures which resulted in a fixation as described by Sean Barron in There's a Boy in There, (1992). "I loved the texture of chains each link looked the same and even felt the same as all the others". One respondent to the Geneva Centre for Autism survey reported the following:
"When I touch the hair of other people it feels really neat, I can feel every strand."
Another commonly reported theme was the need to be the one in control of touching which paralleled the experiences of Temple Grandin. Touch could be tolerable, even enjoyable, if the individual was familiar with the other person, and prepared for the physical contact.
"I like to touch people when they know me or when I know them, hate touch when I don't know."
"Touch is nice sometimes when I know it is coming, I like warning."
Some respondents enjoyed light touch while others reported the need to be touched firmly and enjoyed having their hands, feet and back rubbed. Controlled deep pressure has a calming effect for several individuals. Temple Grandin invented a machine which provides her with deep pressure to her entire body which she controls. This experience continues to serve as a calming procedure for her. Other people indicated a physical reaction to being touched that made physical contact intolerable:
"Don't like people touching me because they make me heat up and itch."
Donna Williams reported a similar sensation in Nobody Nowhere, "Being hugged hurt me it felt like I was being burned."
Differences in hearing constituted the most frequently reported sensitivity among those who responded to our survey. Eighty-seven percent of respondents described some sensitivity related to their auditory experiences. Dr. Bernard Rimland from the Autism Research Institute in San Diego California has collected information from thousands of parents and estimates that approximately forty-five percent of all individuals with autism may have auditory sensitivities.
A common problem amongst younger respondents was the ability to identify a difference between their experience and what others perceive. It would be natural to assume, it one's auditory perception had always been hyper-acute, that this was normal and the way in which everyone else perceived sound as well. If an individual's hearing was painful or uncomfortable, had changed over time or fluctuated from hyper- to hypo-sensitivity, respondents were able to clearly describe their experiences.
Several individuals reported a sensitivity to sounds. Many reported an intolerance for vacuum cleaners, electrical equipment, motor bikes, specific bells ringing, the whistle on the subway, sirens, dogs barking, babies crying, and places where noises echo such as at school or in the shopping malls. This would seem to indicate a sensitivity to specific frequencies which is precisely what audiograms taken in preparation for auditory integration training often reveal. Some individuals reported that high sounds were most difficult to hear while others reported that low sounds, while audible, were intolerable to them.
"The sad thing about my hearing was that the sound of my dad's voice was really weird. His voice sounded like a gun shot going off. Being that close was a terrible feeling for me I was fearful of him thinking I hated him but that wasn't it at all I was scared of his voice."
"I have problems hearing voices they sound disturbing, they don't make sense sometimes."
"High sounds, women's voices hurt more."
A commonly reported experience included the fluctuation from hyper- to hypo- to typical hearing patterns. People explained that sometimes their "ears" worked fine and at other times were hyper-sensitive:
"Sometimes sounds seem louder than others, sometimes my ears work fine."
Another them emerging from our survey revealed a severe difficulty filtering background and foreground noise. This problem has also been described by Donna Williams and her husband Paul, Thomas McKean and several other published authors with autism:
"Everything was always too loud all at the same time."
"I hear sounds that you cannot hear and sometimes it drives me crazy, people doodling with pencils, and pens, shuffling chairs, clothes either sound right loud or jumbled together. I even hear the sound of air moving in the room, even the floor makes noise. Rain sounds like guns going off. Sounds in the same room are jumbled together."
In The Sound of a Miracle, Georgie Stehli described the hyper-acute hearing that explained her sleeping difficulties. At night she could hear her own body functions; the sound of her heart beating, the blood running in her veins, etc. This phenomena was reported by several in our survey as well. The constant noise from their own bodies was described as a terrible distraction that was often the cause of some their behaviours:
"The pumping heart beat used to drive me into behaviours. Most of my behaviour was caused of how I heard things."
"Behaviours most always caused by noise."
Fortunately, for many of these people, the sensitivities to specific sounds lessened or became more tolerable as they grew older. Some described learning to sort out jumbled sounds better even though they remained loud, while others described specific accommodations they made to cope with difficult sounds. For example one fourteen year old young man explained that he was able to cope with the sound of ambulance and fire engine sirens by concentrating on the good deeds that these vehicles were performing
(See profile of Daniel).
Olfactory sensitivities appeared to be less problematic for the individuals responding to our survey. Fifty-six percent reported specific details related to smell. These reports, however, do provide us with insights into behaviours that are directly related to sensitivities to smells which may have been previously misinterpreted.
Several people described "olfactory hallucinations"; the sensation that they could smell something that wasn't really there:
"There have been many times I swear there has been a sweet smell like candy on the air."
"At one time I smelled things that weren't there."
Others described physiological reactions to specific smells that resulted in headaches, nausea, anxiety or brought on seizures:
"I hate the smell of bad foods, it flares my anxieties."
"The smell of french fires gives me a great big headache and some smells give me stomach aches."
"Very bothered by smells. Many smells make me seizure - paint, cigarettes, glue, alcohol, yeast smells."
The following quote explains one individual's unusual refusal to walk across lawns (See profile of Jonathan). One might have assumed that the grass was uneven and therefore difficult to walk on, perhaps the child has taken a "stay off the grass" warning to the extreme. In this case the problem was hypersensitive smell. The smell of fresh grass was intolerable:
"I did not like the smell of fresh grass (as a child). Fresh grass has really too much smell for me to like going on the grass."
A eye-opening account by several individuals described their reliance on smells for recognition and memory. Some respondents explained that they had difficulty remembering people by their faces but could recall them by their smell:
"I remember people and places by smell"
"I like to smell many people because I may not mistake them another time."
Only thirty percent of those responding to our survey made comments about their sense of taste. Most people were able to identify clearly which foods were favourites and which they clearly did not like. The sensitivities reported in this area actually related more to the texture of food or to obsessions about certain foods than to taste.
A common report described a preference for soft foods, as described by Sean Barron, There's A Boy In Here, "I liked to eat things that were bland uncomplicated." "I liked foods that I ate early in life, I found them comforting and soothing. I didn't want to try anything new." Respondents in the Geneva Centre for Autism survey reported:
"I like foods that are soft because they are easy to chew."
"I hate trying anything new. I love the control I have over my diet".
Although this was not surprising the explanations for this preference were often eye opening. The preference for soft foods often related directly to a hyper-auditory sensitivity as the following quotes describe.
"Soft foods I like, they aren't noisy."
"I really don't like salad because they are too noisy to eat. They might sound quiet to you but they sound loud to me when I chew them."
Visual problems are not often noted as a significant issue for individuals with autism. It was a surprise, therefore to find that eighty-one percent of respondents to our survey reported differences in visual perception. Again several common themes emerged from the first hand accounts including extremely acute vision which focused on minute detail, powerful peripheral vision, distracting or stimulating visual experiences, difficulty with depth perception, and perceptual distortions of size and shape and movement.
The hyper-acute vision which has been described by Donna Williams and Georgina Stehli was also reported by several individuals completing our questionnaire. For some people this hyper-sensitivity produced a fascination with specific things:
"I like to look at girl's pretty hair or beards. I like to touch them to see them move side."
"The things that fascinated me in my childhood were flashing neon signs and telecommunication towers that light up in the night."
Georgie Stelhi had often been reprimanded for staring at other people's hair as a youngster. Following Auditory Integration Training, she was able to explain that her fascination with hair was related to her ability to see each individual hair in minute detail hanging like pieces of spaghetti. For other people their vision made it impossible to see larger scenes clearly:
"They (my eyes) see a crowd as one sold mass all running together."
"(As a child) I liked colours. They are very bright the colours of nature outside. So bright it hurts my eyes. Now not so bright."
This hyper-sensitivity often produced a form of stimulation that was irresistible for some people. More than one individual provided interesting insights into the fixation with water play that some people with autism demonstrate. They described a fascination with the effects of light and colour on water which helped to calm and distract them:
"When I splash water I look at the water really hard to try to see the really pretty colours that are reflected from the lights. The colours help me to try to not hear the loud sounds in my head..."
Many people have speculated about the use of peripheral vision by individuals with autism. Often these people have been able to learn new skills despite the fact that they rarely looked directly at the work being taught. Several people described the need to "see from the side" and a broad peripheral field of vision:
"They (my eyes) usually saw things better from the side when I was younger."
"I can see as far back as behind my head."
A difficulty with visual perception of depth was commonly reported. Navigating stairs figured predominantly as problematic and individuals reported the need to watch their feet in order to walk properly:
"I find it difficult to go downstairs. I am scared I will misjudge the step and fall. I have always had this problem."
"The stairs in the school are too long to see where the bottom is. I like to see the bottom of the stairway if I am going to walk down."
"I have to look at my feet to tell where they are. I will fall down if I don't look."
Jim Sinclair has also described this problem: "it wasn't enough to figure out just once how to keep track of my eyes and ears and hands and feet all at the same time. I've lost track of them and had to find them over and over again. Do you have to remember to plug in you eyes in order to make sense of what you're seeing? Do you have to finds your legs before you can walk?" High Functioning Individuals With Autism, (1992).
Some respondents also reported disturbing perceptual distortions of shape, size and movement. Individuals described the perception of the walls closing in on them, the floor suddenly disappearing or images in front of their eyes. Frequently these misperceptions resulted in behaviours that were unexplainable to the observer:
"I see things going up and down really fast. I get really scared I feel like everything is coming at me."
"I'll see something and it will change shape. The walls move it scares me."
"Sometimes I think I don't see things the right size."
"I used to see part of the doorway fly off and try to hit me."
Linked with visual perception were remarkable reports of visual memory. The ability to recall vivid details of events and places recorded in visual memory, the ability to store and review previously viewed television shows, and photographic memory skills have all been described by many people with autism. Temple Grandin has described her ability to design remarkably complex animal handling facilities by using her visual memory to picture every detail prior to drawing blueprints. She likens the experience to running a video of the plans in her mind. Many people with autism have remarkable artistic skills and can easily reproduce on paper what they see. One such individual is Stephen Wiltshire from London, England who is now world renowned for his sketches. After glancing at a scene for a matter of seconds, Mr. Wiltshire is able to reproduce the picture in accurate detail on paper. Unusual visual abilities may account for some of the savant skills that some individuals with autism are noted for.
Participants in the Geneva Centre for Autism survey described excellent visual memories and the ability to reproduce music and pictures in their heads.
"Yes, I always have a good memory. Time machines, numbers, schedules, sequences, pictures, logos, and much more that I know."
"My memory is very good for things I see. When I go somewhere I remember how to look at the road to get there again. I look at the road to try to remember if it is the same road. The pavement looks different on every road, to me it is obvious which road we go on."
"I can carry memories with me in my head. It's like I have a pictures of everything I see. For example, I am always carrying the memory of the things I see on T.V."
In his recently published book Soon Will Come The Light, (1994) Thomas McKean addresses the question of whether or not individuals with autism have an extra sensitivity to others' emotions, thoughts or feelings. Mr. McKean makes no attempt to prove or explain the presence of this ability but offers his own experiences and insights:
"It is rare that I know what anyone is actually thinking, but concurrent emotions are very common."
"And I have noticed that the link is much stronger if I am actually touching the person."
"Regardless of whether it is telepathy or a learned body language reading skill, I did not ask for this ability and do not much care for it. I feel that I have more than once invaded domain that was meant to be kept personal."
Several people involved in the Geneva Centre for Autism survey also described experiences akin to those of Mr. McKean.
"When I was younger I heard a lot of noises in my head, spoken things and unspoken things. Tell me if you can hear people think, I wish I didn't. If there is a medication that will kill peoples thoughts I like to try it."
When they touch me I can think what they think, their thoughts and emotions. Just now the fear in you of what I just said."
"I feel the pain of people I am close to. If I have a headache I sometimes have it because Barb isn't feeling good or Mom is stressed out."
"I really like the teacher assistant, I feel sad when she is sad, and happy when she is happy but I don't like the feeling sad."
Donna Williams also described a similar experience in her first book Nobody Nowhere. "Such day dreams were like film in which I'd see a sequence of everyday events that really didn't relate in any way to myself. I began to test the truth of these day dreams approaching the friends I'd seen in them and asking them to give me a step by step detailed picture of what they were doing at the time I had the dream. Amazingly to the finest detail, I would find I had been right. This was nothing I had controlled, it simply came into my head, but it frightened me."
The following profiles are summaries from four individuals who responded to the Geneva Centre for Autism sensory survey. They provide a cross-section of ages from childhood to adolescence to adulthood. Two of these individuals responded verbally to the questionnaire and two responded using facilitated communication. One person resides in England, one in Ontario, one in Quebec and one on the east coast of Canada and they do not know one another. Their responses illustrate the variety of their experiences as well as some that are shared. Pseudonyms have been assigned to each of the individuals.
Michael, was age twenty five when he independently responded to the questionnaire. He presents as a very high functioning individual with autism, has good verbal skills but lacks confidence in social situations.
Michael claims that his earliest memories are from a period prior to his birth when he can recall being able to hear his mother's heartbeat. This is similar to the experience of one of the individuals profiled in Exploring Autism Through First Hand Accounts, (Cesaroni, L, Garber, M., 1991)
When asked about other memories from his childhood he reported that he liked math and was able to count to one thousand at a very early age and he had developed an interest in astronomy by age four or five. He disliked fables and myths because they weren't logical or based in reality and felt compelled to dispute stories such as that of Icarus flying too close to the sun. He still has a very good memory for things that interest him such as numbers and likes to have things very orderly and predictable.
Michael also mentioned that he had odd and fear-inducing perceptions of his environment. He was afraid of marks on the floorboards of his bedroom and when light shone through above the curtains in his room he believed it was alive. He also thought that if a ray of light touched his head it would become permanently attached. As an adult he has overcome many of his "phobias", largely with the help of reassurance from his parents. He is most anxious in social situations where he experiences extreme fear "that somehow I will make a fool out of myself or be regarded as an oddity."
It is interesting to note that many of the "more able" verbal respondents experience higher levels of anxiety and tend to be particularly anxious regarding social situations. The non-verbal respondents appear to yearn for more opportunities to participate in social situations and to form relationships.
In the sensory areas he reported the following information:
Touch: He felt that the had no evidence of abnormalities. He is however, extremely frightened of being the victim of physical violence.
Vision: He reported that his eyes have always been sensitive to light. He feels that the perceives things accurately but has lots of vision problems and has already received laser treatment for cataracts. He is understandably worried about the health of his eyes.
Hearing: He has never liked loud noises and still finds it necessary to cover hi ears if confronted with a noise such as a jack hammer in the street. Again, he feels his auditory perception is good and nothing suggests that his dislike of sound is "any greater than that of a normal person".
Taste: Michael enjoys a limited diet which he has not varied much since childhood. He describes it as "cereal, peanuts (for protein), sausages, french fries (carbohydrates), apples, bread and marmite (a yeast extract spread). He does not eat milk, vegetables, eggs, chicken or any other meat. He also said that this diet "has been called o.k. by someone in authority". Talking about food makes him anxious.
Smell: He reported "no evidence of abnormalities."
Pain: He feels that he might be somewhat less sensitive to pain. He related a recent incident when he has cut his finger but did not realize until much later while he was playing tennis and noticed that he had blood all over his hand.
Anxiety: Michael reported feeling most anxious about personal safety, particularly he fears house fires. He is extremely anxious about social interactions. He feels most calm when he has had a successful social experience with "no teasing" or when he is in control of a situation ie. talking about math.
Stereotypical Behaviours: Michael admitted that he still experiences some hand flapping behaviours, especially when he is excited. He feels that this, "could be the result of isolation, little physical contact with others and the inability to share experiences".
Michael will be attending university soon to pursue a math degree. He hopes to someday receive a Ph.D. in this area. He said that he used to think he would get married and, "live happily ever after but after a lifetime of bullying, teasing, rejection and feeling like a fool, the sad realization that this just isn't the case". He feels that "casual friends are enough to handle", at the moment and is closest to people who, "understand autism, or are prepared to listen and don't regard me as odd": This is very similar to Temple Grandin's experience, (Emergence Labelled Autistic, 1986)
Daniel was fourteen years of age when he agreed to respond to the questionnaire by taking part in a video-taped interview with one of the authors. He presents as a capable adolescent with an engaging bur unusual interaction style and an interest in several perseverative topics such as music, flags and time.
Daniel reported that his earlier memories are from a period prior to his first birthday form which he could recall breaking a certain toy. He also mentioned having an interest in logos, signs, and flags as a toddler, an interest which continues to fascinate hi even now. He said that he could read signs and short words by age one and that by age three he, "could read anything but my preschool knew I had trouble with spacing, capitals, lower case and punctuation". * Many of the respondents mentioned a very early interest in letters and numbers and many said they could read while still preschoolers.
He recalled that he liked colours, symbols, patterns and music. He disliked it when his flags broke and didn't like the story Gulliver's Travels. He also reported that by age nine he was very literal and became angry if people said things that weren't true. * This is somewhat similar to Michael's experience with Icarus and other myths and fables.
He remembered being particularly frightened by loud noises such as the horn on the ferry boat or the clock at old city hall. To comfort himself he would cover his ears, listen to music or take a nap. He continues to find naps and music comforting although he says that Kiss and Ozzie Osbourne get him "wired up" while classical music calms him.
He reported the following information about his sensory experiences:
Touch: He reported that "constant touch, like a hug, would bug me. A pat is o.k." He also said that wool makes him itchy.
Vision: He finds flags, signs and logos fascinating to look at, especially neon hotel signs and a lighted barometric pressure indicator. He said that mirrors remind him of when he was little but was unable to explain why. He also said that "eye contact with new people is o.k. now".
Hearing: As mentioned earlier, as a child he found loud noises very bothersome ie: the whistle on the subway and the lifeguard's whistle in a pool as well as clocks that "bong". He explained that he got over his fear of fire engines and ambulance sirens by "thinking about the good things they do, like lifesaving people". He has enjoyed music from a very early age and says that he can tolerate the loud music at concerts, "because I concentrate on the music, not the temperature of the sound". Apparently the sound Scarborough Fair takes him "back in time".
Taste: Daniel reported that the textures of certain foods bother him or the way a food looks ie. cream cheese and jam he finds particularly unappealing. He has not drunk milk since age five and he avoids cheese except on pizza. *Both he and Michael stopped drinking milk, by choice, at an early age.
Smells: He said that he is bothered by: "cheesy smells, farts, oils or chemicals".
Pain: Daniel is bothered by bleeding or seeing blood. He used to be very upset about getting needles but finds that covering his eyes helps to alleviate some of his anxiety. Daniel experiences anxiety about tests at school or when things are messy. When asked about stereotypical behaviours he couldn't think of any but he has been observed to pace, jump and/or flap his hands when worried or excited. *Many of the verbal respondents reported some difficulty with uncontrolled body movements. Many others, like Daniel, seemed either unaware of this difficulty or uncomfortable discussing it. In contrast, all of the non-verbal respondents reported having more difficulty with movement and an awareness of the problems they experienced a result of uncontrolled body movements and behaviours.
Daniel currently attends high school. When asked about the future, he responded, "girls are pretty. When I'm eighteen or so I might start dating. I'd like to get married if I can but I'm afraid I might be an "only man".
Carolyn is an eight year old who used facilitated communication and a Canon Communicator to provide her answers to the questionnaire. (The direct quotes from Carolyn appear exactly as she typed them). Her memories of being younger included tearing paper because it felt good. She liked "the pool and sand and red gym ball and guitar music and yogurt a and heet in my playroom". She disliked people shouting, the green and noises like water and wind. Georgie Stelhi mentioned a similar reaction to these noises, (The Sound of a Miracle, 1991).
She remembered being frightened by the print on books because "all the words looked funny". She was also scared of, "the feel of toenails being cut and hair because they might not grow again". This is similar to what Sean Barron reported about hating to have anyone cut, or even touch his hair, (There's a Boy In Here, 1992) Carolyn was comforted by "the feel of hands on my feet and the soundd of voices was helpful".
Carolyn's account of her sensory experiences follows:
Touch: " i liked the feel of sandd and ruff things i had trouble with things like pappeer i like people touching me with looks and strong hugs. i like my hands and feet a rubbed this has not changed".
Vision: "i like to look at the color yellow it seems so briht i don't like green things because they hurt my eyes". it is hard to look at peoplese yes because they move to much water is nice to look at because it is full of colour".* Her comment about looking at water is echoed by Georgie Stehli, (The Sound of a Miracle, 1991) and also by Jeremy in the next profile.
Hearing: "i have problems hearing voices they sound disturbing they don't make sense sometimes. watter annd washing machines and vacuums hurt my ears i notice it is better since i listened to the tapes" (she is referring to auditory training) "it is worse some days".
Taste: "i like foods that are soft like yogurt. i don't like hard fooods because they feel like rocks. Cold food is better. i remember being scared of nnot being able to swallow". * Sean Barron reported about similar food preferences and the need for comfort foods, (There's a Boy In Here, 1992).
,Smell: "i find that smells please me when they are strong ii like like smelling hands and feet i don't like kettens.
Pain: "i can tell where it hurts. it hurts most in my hands and feet. i feel pain a lot". * Thomas McKean talks about experiencing constant pain, (Soon Will Come the Light, 1994).
Carolyn provided some comments about what makes her anxious. "i worry when i have to do something new and wwhen there is too much noise. i can calm myself by flikinng and breathing. i feel calm when I am reading". She added "I have trouble with too many things around me at thhe same time. i cann remember places well but i have trouble with peoples faces".
When asked about stereotypical behaviours she responded, "my boddy often plays tricks on me like my hands moving funny. it happens more outside because it is harder to be out. i roock and flap my hands because it helps me stay in place better." Those comments echo those of some other respondents regarding difficulty with movement and controlling their bodies. Appropriately enough when asked about marriage and the future she responded "i haven't hadd time to think of it".
Jonathon was sixteen years of age when he completed the questionnaire. He responded to the questions by using facilitated communication on a computer keyboard. As with Carolyn his responses appear exactly as they were originally typed. Jonathon is a non-speaking adolescent who attends high-school and desperately wants to talk. Since responding to this questionnaire he has been working on relaxation techniques including visual imagery. This has helped him to control his behaviour and also relaxes his muscle tone which enables him to type with less support from a facilitator.
When asked about his childhood memories he said, "I remember I tried to talk all the time when I was three. I tried to make sounds but the sounds were in my head not in my tongue." It was obviously difficult for him to think about the past as is demonstrated by this quote, "It is killing me to remember the days when people thought I was stupid. I liked going to the beach and playing in the water with my family". He was able to articulate some of the things which frightened him as a child, "I was scared in the bathroom that the water in the sink would be too hot. I was scared that the kids would not like me because I don't talk, I didn't like one hallway in school because I was scared that too many kids would be too noisy. I just hated not talking."
He provided the following information regarding sensory perception:
Touch: "When I was younger I didn't want to be touched at all. I like to touch things to make me forget that I don't talk, like blocks and the stick in cheese and crackers. Try to tell me what it feels like to touch other people. I would like to touch other people but it doesn't work. I hope to learn to hug girls soon".
"I like to touch things that are smooth. I like to touch things that are shiny. Touching smooth things really helps me to just forget about things I don't want to think about like french class."
"I like if people touch my shoulder to help me do things I can't do by myself. I like it when my brother wrestles with me or tickles me. I like to have people shake my hand to say hello. It kills me to be hugged from the front. I like hugs from the side. I don't like faces too close to me."
Vision: "I like to look at things that don't make me listen to things in my head. I have to look at my feet to tell me where they are. I will fall down if I don't look." *Jonathon's comment about having to visually monitor his extremities is echoed by both Donna Williams (Nobody, Nowhere, 1992) and Jim Sinclair (High Functioning Individuals With Autism, 1992).
"I look at things from the side for the reason that it is easier. When I look straight at things I just don't see things right. I am just hoping I learn to look at the keyboard."
"When I am at the top of the stairs I don't look down because ir looks like it is too far try to to walk. I can't tell how far apart the stairs are so I hold the handrail".
"When I splash in the water I look at the water really hard to try to see the really pretty colours that are reflected from the lights. The colours help me try to not hear the loud sounds in my head from the really lousy things like the things people think in their heads".
Hearing: "When I was younger I was too fearful of loud noises like people clapping at the show. The noise seemed right inside my head".
"Some sounds are too loud like vacuums, fans babies crying, dogs barking. It is looking good for me to hear better if I have auditory training.
"I don't like the science room at school because they are too noisy in the class. The kids really talk too much in class. I just really hate it when I am in a room where lots of people are talking. People talk to me but I can't understand what they are saying in a crowded room."
"I like the hum in the car when we go on the highway. The sunbird makes a nice hum but the sprint goes too low for me to hear."
Taste: "I like food that is really good to eat like macaroni and chicken nuggets. There are lots of foods I don't like. I don't like fruit. I really don't like salad either because they are too noisy to eat. They might sound quiet to you but they sound loud to me when I chew them."
"Not like going to the really noisy cafeteria at school."
Smell: "Not like the smell of fresh grass. Grass has really too much smell for me to like going on the grass. Now I like the smell of fresh girls better than fresh grass."
Pain: "I didn't know if I hurt myself until people asked my why I was crying. I didn't know where I hurt myself until mom said "Is it your leg or your head?"
"Now I can tell where is hurt but I can't touch where it hurts."
Other recollections which Jonathon shared included "I was three when I started to read numbers on the phone. I like letters but I didn't learn to read until I was in grade three.
In grade two, I was too worried about the noise in the class to look at the board.
His comments regarding friendships and relationships were the following:
"Friends are the really best thing there is in the world. Friends are important for you liking yourself. I like to have lots of friends."
"Girls are not interested in going out with people who don't talk> I likely will not get married".
"I hate babies crying. Hate it if I had a bay and it cried all the time."
In closing when asked about movement and controlling behaviours he replied, "My body doesn't listen to my brain. My body doesn't do the things I like it to do. Not like rocking or spinning. I plan to be normal. Just try not to rock or spin.",æ
In conclusion, we have been monitoring the first-person accounts regarding autism and asking people to complete our survey in order to try to gain more insights into this mysterious disorder. The information we have learned regarding sensory perceptions and experiences has helped to expand our repertoire of hypotheses about behaviours and why they occur. This has, in turn, allowed us to come up with some new strategies and accommodations which may be useful for individuals with autism. We plan to report on some of these strategies in an upcoming publication.
Using the sensory survey has also taught us that although there may be common themes and perceptions it continues to be important to consider each individual and to work with that person to discover what their sensory experiences and needs to remain cognizant of the role that maturation and development play in the evolution of sensory experience.
We would like to thank each of the authors mentioned in the reference list and thank you to everyone who took the time and effort to complete our survey. Anyone who is interested in receiving a copy of the survey to complete anonymously, please contact the resource department at the Geneva Centre for Autism.
Ackerman, Dianne, A Natural History Of The Senses, 1990. Random House Inc. N.Y.
Ayres, Jane, Sensory Integration and The Child, 1979. Western Psychological Services, Los Angeles, California
Barron, J. & Barron, S., There's A Boy In Here, 1992. Simon and Shuster, N.Y.
Berard, G., Hearing Equals Behaviour, 1993. Keats Publishing Inc. Connecticut
Cesaroni, L., Garber, M., Exploring The Experiences Of Autism Through First-hand Accounts. Journal of Autism and Developmental Disorders, Vol. 21, No. 3, 1991
Cytowic, R.E. The Man Who Tasted Shapes, 1993. G.P. Putnam Sons Publishers, N.Y.
Delacato, C., The Ultimate Stranger, 1974. Academic Therapy Publications, Novato California
Gilmour, T.M., Madaule, P., Thompson, B., About the Tomatis Method, 1989. The Listening Centre Press, Toronto, Ontario
Grandin, T., Scariano, M.M., Emergence Labelled Autistic, 1986. Arena Press, Novato, California
Hart, Charles, A Parents Guide To Autism, 1993. Pocket Books, New York, N.Y.
Flach, F., Rickie, 1990. Random House Inc., Toronto
Irlen, H., Reading By the Colors, 1991. USA.
Maurice, Catherine, Let Me Hear Your Voice, 1993. Alfred A. Knopf, Inc., N.Y. (Random House Inc., Toronto.)
McKean, Thomas, Soon Will Come The Light, 1994. Future Education, Inc., Arlington, Texas.
Sacks, O., The Man Who Mistook His Wife For A Hat, 1985. Harper and Row, Publishers, N.Y.
Schopler, E., Mesibov, G., High Functioning Individuals With Autism, 1992. Plenum Press, New York, N.Y.
Stehli, A., The Sound Of A Miracle, 1991. Doubleday, New York, N.Y.
White, D., Autism From The Inside, 1987, Medical Hypothesis, 24 Longman Group UK Ltd.
Williams, D., Nobody Nowhere, 1992. Doubleday Canada Limited, Toronto
Williams, D., Somebody Somewhere, 1994. Doubleday Canada Limited, Toronto
Williams, D., A Sight For Sore Eyes, 1994.
Edited by - N. Walker, J. Cantello,Copyright - Geneva Centre for Autism, 1999