Unusual sensory experience is a phenomenon that has been observed in individuals with autism for many years and is listed as an associated feature of autism in the American Diagnostic and Statistical Manual IV. Although it is not considered a diagnostic characteristic, personal accounts and reports from caregivers are indicating that unusual sensory perception is experienced by high numbers of individuals with autism.
Recent publications by verbal adults with autism have revealed fascinating information in this area. Temple Grandin, (Emergence: Labelled Autistic, 1986), Sean Barron (There's a Boy in Here, 1992), Donna Williams (Nobody Nowhere, 1992), Darren White (Autism from the Inside, 1987), have all provided us with insights into the sensory world of individuals with autism and explanations for their extreme reactions to certain sensory stimuli. In addition, the authors gathered information by interviewing 25 children and adults with autism. Those interviewed included both verbal and facilitated speakers.
These sources have revealed extremes of hypo and hyper sensitivity of any of the senses including, hearing, smell, taste, vision, and touch. These differences may be constant or may fluctuate from one extreme to another and change across the life span. The sensory experience of synaesthesia was described by several people with autism. Movement disturbance and how this relates to sensory experience was another area explored in the interviews. The participants offered their experiences and examples of the coping strategies which they devised.
Autism is not the only disorder in which a variation in sensory experience has been documented. Similar experiences by individuals with other disorders will be outlined and overlapping characteristics identified.
In recent years several therapies
have generated a great deal of interest in the field of autism.
Some of these have specifically claimed to help normalize the
sensory experiences described by individual with autism or their
families. Hundreds of people with autism have pursued auditory
integration training. Behaviourial optometry and chiropractic
have also been investigated as sources of help. Individuals with
autism have offered many accommodations that have helped them
cope with extreme sensory experiences.
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 behavioural disturbance; from severe mental retardation to a social disorder to neurological disorder involving movement and sensory disturbance.
Most people now recognizes 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, Georgiana 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 hyposensitivity 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 the joy of touch and panicking 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 hecause
of the feeling of my legs touching each other is unpleasant".
In Nobody Nowhere, (1982) the recently published autobiography of Donna Williams, the author described the disturbing and eye opening experiences of living with autism. Her hyper-sensory perceptions related to vision, 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 ldnd 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 out. Years later I had my hearing tested again. At the 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 of sound. It was a though 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 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 called 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 to crowded, overwhelming or bombarding. The overwhelming background noise I had always heard before as foreground; machine sounds in distant rooms, the hum of traffíc, 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".
"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 daughter's struggle with autism and the surprising benefíts 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
explanatíon of many of the unusual behaviours Georgie and
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 of 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, 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 old. Approximately one half of the respondents were verbal while the other half were non-verbal 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 diferences 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.