by Temple Grandin, Ph.D.
Assistant Professor
Colorado State University
Fort Collins, Colorado 80523, USA
(Updated June 2000)
INTRODUCTION
In this paper, I will describe my experiences with
autism. The main areas I will cover are visual
thinking, sensory problems, and difficulties with
communication. After I describe my experiences, I will
discuss the similarities and differences between
myself and other people with an autism diagnosis.
There is probably a continuum of autism subtypes that
vary in the pattern of neurological abnormality and
the severity of neurological problems.
SOUND AND VISUAL SENSITIVITY
My hearing is like having a sound amplifier set on
maximum loudness. My ears are like a microphone that
picks up and amplifies sound. I have two choices: 1)
turn my ears on and get deluged with sound or 2) shut
my ears off. Mother told me that sometimes I acted
like I was deaf. Hearing tests indicated that my
hearing was normal. I can’t modulate incoming auditory
stimulation. I discovered that I could shut out
painful sounds by engaging in rhythmic stereotypical
autistic behavior. Sometimes I “tune out”. For
example, I will be listening to a favorite song on the
car radio and then later realize that I tuned out and
missed half of the song. In college, I had to
constantly take notes to prevent tuning out.
I am unable to talk on the telephone in a noisy office
or airport. Other people can use the telephones in a
noisy airport, but I cannot. If I try to screen out
the background noise, I also screen out the voice on
the telephone. Autistic people with more severe
auditory processing problems are unable to hear a
conversation in a relatively quiet hotel lobby.
Autistic people must be protected from noises that
hurt their ears. Sudden loud noises hurt my ears–like
a dentist’s drill hitting a nerve (Grandin 1992a). A
gifted, autistic man from Portugal wrote: “I jumped
out of my skin when animals made noises” (White and
White 1987). An autistic child will cover his or her
ears because certain sounds hurt. It is like an
excessive startle reaction. A sudden noise (even a
relatively faint one) will often make my heart race.
I still dislike places with many different noises,
such as shopping centers and sports arenas.
High-pitched continuous noise, such as bathroom vent
fans or hair dryers, are annoying. I can shut down my
hearing and withdraw from most noise, but certain
frequencies cannot be shut out. It is impossible for
an autistic child to concentrate in a classroom if he
or she is bombarded with noises that blast through his
or her brain like a jet engine. High-pitched, shrill
noises are the worst. A low rumble has no affect, but
an exploding firecracker hurts my ears. As a child, my
governess used to pop a paper bag to punish me. The
sudden, loud noise was torture.
The fear of a noise that hurts the ears is often the
cause of many bad behaviors and tantrums. Some
autistic children will attempt to break the telephone
because they are afraid it will ring. Many bad
behaviors are triggered due to anticipation of being
subjected to a painful noise. The bad behaviors can
occur hours before the noise. Common noises that cause
discomfort in many autistic individuals are school
bells, fire alarms, score board buzzers in the gym,
squealing microphone feedback and chairs scraping on
the floor. When I was a child, I feared the ferry boat
that took us to our summer vacation home. When the
boat’s horn blew, I threw myself on the floor and
screamed. Autistic children and adults may fear dogs
or babies because barking dogs or crying babies may
hurt their ears. Dogs and babies are unpredictable,
and they can make a hurtful noise without warning.
Children and adults with extreme sound sensitivity may
also fear the sound of water flowing or waves (Stehli
1991). Children with less severe auditory sensitivity
problems may be attracted to sound and visual stimuli
that more severely impaired children tend to avoid. I
liked the sound of flowing water and enjoyed pouring
water back and forth between orange juice cans;
whereas another child may avoid the sound of flowing
water. I liked the visual stimulation of watching
automatic sliding doors; whereas another child might
run and scream when he or she sees an automatic
sliding door. A loud vacuum cleaner may cause fear in
one autistic child and may be a pleasurable fixation
to another child. When I look at moving sliding doors,
I get the same pleasurable feeling that used to occur
when I engaged in rocking or other stereotypical
autistic behaviors. Some autistic individuals can see
the flicker of florescent lights. Coleman et al.
(1976) found that florescent lights increased
repetitive behavior in some autistic children.
TACTILE EXPERIENCES
During my travels to many autism conferences, several
parents have reported to me that holding therapy was
beneficial. It is not the “cure” that some of its
proponents tout, but it has a beneficial affect on
some children. In my opinion, the benefits of holding
therapy could be obtained through less stressful
methods. I cringed when I watched the BBC show, “The
Visit,” and I am glad I did not have to endure forced
holding. Fisher (1989) describes a gentler approach to
holding that worked with her daughter.
One mother told me that she gently encouraged her
child to tolerate more and more holding, and he
responded with increased affection and improved eye
contact. Powers and Thorworth (1985) found that eye
contact and interest in people improved after a
gentler behavioral method was used. In one case, a
young boy was held in a light hug until crying
lessened. As soon as crying was reduced, the boy was
released. Gradually, the amount of holding time was
increased.
I believe that the beneficial effects of holding in
some children are due to desensitization to touch of
the autistic child’s nervous system. It is a
physiological sensory process that has nothing to do
with mother bonding or anger. I completely disagree
with Welch (1983) that the child has to become
severely distressed for holding to be effective. The
sensory problems of autism are often overlooked. Many
autistic people are over sensitive to both sound and
touch. Autistic children have problems modulating
sensory input (Ornitz 1985).
Autistic Tactile Problems
I pulled away when people tried to hug me, because
being touched sent an overwhelming tidal wave of
stimulation through my body. I wanted to feel the
comforting feeling of being held, but then when
somebody held me, the effect on my nervous system was
overwhelming. It was an approach-avoid situation, but
sensory over stimulation caused the avoidance, not
anger or fear as Richer and Zappella (1989) suggest.
An autistic man, interviewed by Cesaroni and Garber,
stated that touching was not painful, but it was
overwhelming and confusing.
Small itches and scratches that most people ignored
were torture. A scratchy petticoat was like sand paper
rubbing my skin raw. Hair washing was also awful. When
mother scrubbed my hair, my scalp hurt. I also had
problems with adapting to new types of clothes. It
took several days for me to stop feeling a new type of
clothing on my body; whereas a normal person adapts to
the change from pants to a dress in five minutes. New
underwear causes great discomfort, and I have to wash
it before I can wear it. Many people with autism
prefer soft cotton against the skin. I also liked long
pants, because I disliked the feeling of my legs
touching each other.
Sensory Therapy
Therapists have helped many autistic children through
gently applying tactile and vestibular stimulation
(Ayres 1979; King 1989). One effect of this
stimulation is to desensitize the tactile system. This
is not a cure, but it has increased speech, affection,
and eye contact in some children. It also helps to
decrease stereotypical and self-injurious behaviors.
The sensory activities are done gently as fun games
and are never forced. Strong encouragement and some
intrusiveness may be used, but a good therapist knows
how far he or she can intrude before the stimulation
becomes so overwhelming that the child starts crying.
Even intrusive activities are kept fun. During the
activities, the therapist will also work on improving
speech and establishing eye contact.
Ray et al. (1988) found that a mute child will often
start making speech sounds while he or she is swinging
in a swing. Swinging stimulates the vestibular system
and the defective cerebellum. Spinning in a chair
twice a week helps to reduce hyperactivity (Bhatara et
al. 1981); and non-contingent vibration will reduce
stereotypical behavior (Murphy 1982). Research has
also shown that vigorous aerobic exercise reduced
maladaptive and stereotypic behavior (Elliot et al.
1994).
Hypersensitivity to touch can be desensitized through
firmly but gently stroking a child with different
cloth textures (Ayres 1979). The pressure must be firm
enough to stimulate deep pressure receptors. Very
light touch should be avoided because it increases
arousal and excites the nervous system. Vestibular and
sensory stimulation also have a beneficial affect on
improving affection and social behavior.
Deep pressure stimulation is also calming (Ayres 1979;
King 1989) Therapists often roll the children up in
mats. Many autistic children will seek deep pressure.
Many parents have told me that their children get
under the sofa cushions or mattress. A slow, steady
application of pressure had a calming affect on me;
and a sudden jerky motion tended to cause arousal
(Grandin 1992b). Self stimulatory behaviors can be
reduced by having an autistic child wear a garment
that applies pressure (McClure et al 1991; Zisserman
1992).
Good results can often be obtained with less than an
hour of sensory treatment per day. Spending hours and
hours each day is not required. If a treatment method
is going to be effective with a particular child, it
will bring about improvement with reasonable amounts
of effort. The effectiveness of sensory treatment will
vary from child to child.
Tactile Research
Both human and animal studies indicate that deep
pressure is calming and reduces arousal in the nervous
system. Takagi and Kobagas (1956) found that pressure
applied to both sides of a person’s body decreased
metabolic rate, pulse rate, and muscle tone. Gently
pinching a rabbit’s skin with padded clips creates a
deactivated EEG reading, relaxed muscle tone, and
drowsiness (Kumazawa 1963). Pressure gently applied to
both sides of a pig in a padded V trough will induce
sleep and relaxation (Grandin et al. 1989). Rubbing
and gently pinching a cat’s paw will decrease tonic
activity in the dorsal column nuclei and the
somatosensory cortex (part of the brain that receives
touch sensation) (Melzack et al. 1969).
Squeeze Machine
I craved deep pressure stimulation, but I pulled away
and stiffened when my overweight aunt hugged me. In my
two books (Grandin and Scariano 1986 and Grandin
1995), I describe a squeeze machine I constructed to
satisfy my craving for the feeling of being held. The
machine was designed so that I could control the
amount and duration of the pressure. It was lined with
foam rubber and applied pressure over a large area of
my body.
Gradually I was able to tolerate the machine holding
me. The over sensitivity of my nervous system was
slowly reduced. A stimulus that was once overwhelming
and aversive had now become pleasurable. Using the
machine enabled me to tolerate another person touching
me. A partial explanation for the lack of empathy in
autism may be due to an oversensitive nervous system
that prevents an autistic child from receiving the
comforting tactile stimulation that comes from being
hugged. I learned how to pet our cat more gently after
I had used the squeeze machine. I had to comfort
myself before I could give comfort to the cat. When I
handle cattle, I often touch the animals because it
helps me to feel gentle towards them. It is important
to desensitize an autistic child so that he/she can
tolerate comforting touch. I have found that if I use
my squeeze machine on a regular basis that I have
nicer images in my dreams. Experiencing the comforting
feeling of being held makes nasty or mean thoughts go
away.
Several squeeze machines are now in use at sensory
integration clinics in the United States. Therapists
have found that some hyperactive and autistic children
will immediately use the machine, and others are so
oversensitive to touch that they initially avoid the
machine and other activities involving touch, such as
finger painting or being rubbed with different cloth
textures. Over sensitive children are gently
encouraged to engage in tactile activities that they
initially avoided. An activity that was initially
aversive and overwhelming gradually becomes
pleasurable. Activities involving touch become
pleasurable when the nervous system becomes
desensitized. For example, children who cannot
tolerate tooth brushing can be desensitized through
gently rubbing them around the mouth.
Animal Reactions
My reaction to being touched was like a wild horse
flinching and pulling away. The reactions of an
autistic child to touch and a wild horse may be
similar. The process of taming a wild animal has many
similarities to an autistic child’s reaction to touch.
There are two methods that can be used tame a wild
horse: 1) forced holding and 2) gradual taming. Both
methods work. Forced holding is quicker and more
stressful than the somewhat slower gradual taming
process. Good horse trainers only use forced holding
on extremely young horses.
When forced holding is used on animals, care is taken
to avoid excitement. The procedure is done as quietly
and gently as possible. The animal is securely tied or
held in a livestock restraint device. It is held
tightly and is unable to kick or thrash. During the
restraint period, the trainer pets and strokes all
parts of the animal’s body and talks gently to it.
Touching every part of the animal’s body is an
important component of the taming procedure. The
animal is released when it is not resisting. Sessions
seldom last more than one hour. A disadvantage of this
procedure is that forced restraint is stressful.
The taming approach is done more gradually. I have
trained sheep to enter a device similar to my squeeze
machine repeatedly (Grandin, 1989). The sheep were
gradually introduced to the device. At first they just
stood in it and then pressure was applied for
increasing amounts of time. Horse trainers have found
that nervous horses become easier to handle if they
are rubbed and brushed frequently. At first the horse
may flinch, but gradually it will start relaxing when
stroked. Like the autistic child, touching that was
initially aversive becomes pleasurable. A stimulus
that was once actively avoided is now actively sought
out.
COGNITIVE VERSUS SENSORY
In this paper I have concentrated on the sensory
aspects of autism and have not discussed behavioral
and cognitive (thinking) factors. Cognitive and
behavioral aspects are important, but I concentrated
on the sensory aspects because these are often
neglected.
Sensory processing problems may explain some autistic
behaviors, and differences in cognitive processes may
explain others. Cerebellar and brain stem
abnormalities are a probable explanation of many
sensory problems, but they would not explain cognitive
differences, such as concrete thinking and unusual
visual spatial skills. The cognitive differences
between autistic and normal children are probably due
to other brain abnormalities. Autopsies of nine
autistic brains revealed abnormalities in the
cerebellum, hippocampus, amygdala, and other parts of
the limbic system (Bauman 1991, and Bauman and Kemper
1994). These areas are involved with learning and
memory. Brain wave (EEG) studies indicated that
autistic children have severe abnormalities in their
capacity to shift attention between visual and
auditory stimuli (Courchesne et al. 1989). Brain
structures that control attention shift are connected
to the cerebellar vermis. Abnormalities in attention
shifting may be the basis of perseverate (repetitive)
behavior and some social deficits. This may possibly
explain why treatments that stimulate the cerebellum
and certain sensory treatments often improve overall
behavior. Further research has shown that the amygdala
(emotion center) in the brain is underdeveloped. This
may explain some of the social deficits of autism.
Brain scans have revealed that some of the circuits
between the frontal cortex and amygdala are not
functioning normally (Haznader et al., 1997). This may
force a person with autism to use intellect and logic
to make social decisions instead of emotion cues.
Sensory Deprivation Symptoms
The symptoms of sensory deprivation in animals and
many autistic symptoms are similar. Animals confined
to a barren environment are excitable and engage in
stereotypies, self-injury, hyperactivity, and
disturbed social relations (Grandin 1989b; Mason 1960;
Harlow and Zimmerman 1959). An animal in a barren
environment engages in stereotypies in an attempt to
stimulate itself.
Why would a leopard in a concrete cell at the zoo and
autism have similarities? From my own experience, I
would like to suggest a possible answer. Auditory and
tactile input often overwhelmed me. Loud noise hurt my
ears. When noise and sensory over stimulation became
too intense, I was able to shut off my hearing and
retreat into my own world. Possibly the autistic child
creates his or her own self-imposed sensory
deprivation.
In pulling away, I may not have received stimulation
that was required for normal development. Possibly
there are secondary central nervous system
abnormalities that happen as a result of the autistic
child’s avoidance of input. The initial sensory
processing abnormalities that the child is born with
cause the initial avoidance. Autopsy studies indicate
that cerebellar abnormalities occur before birth
(Bauman 1991, Bauman and Kemper 1994). However, the
limbic system which also has abnormalities is not
mature until the child is two years old. The
possibility of secondary damage to the central nervous
system may explain why young children in early
intervention education programs have a better
prognosis than children who do not receive special
treatment.
Animal and human studies show that restriction of
sensory input causes the central nervous system to
become overly sensitive to stimulation. The effects of
early sensory restriction are often long lasting.
Placement of a small cup on a person’s forearm for one
week to block tactile sensations will cause the
corresponding area on the opposite arm to become more
sensitive (Aftanas and Zubeck 1964). Puppies reared in
barren kennels become hyperexcitable, and their brain
waves (EEG) still showed signs of over arousal six
months after removal from the kennel (Melzack and
Burns 1965). The brain waves of autistic children also
show signs of high arousal (Hutt et al. 1965).
Trimming the whiskers on baby rats will cause the
parts of the brain that receive input from the
whiskers to become oversensitive (Simon and Land
1987). This abnormality is relatively permanent. The
brain areas were still abnormal after the whiskers had
grown back.
Perhaps it would be beneficial if autistic babies were
gently stroked and “tamed” when they stiffen and pull
away. I often wonder if I had received more tactile
stimulation as a child, if I would have been less
“nervous” as an adult. Handling baby rats produces
calmer adults which are more willing to explore a maze
(Denenberg et al. 1962; Ehrlich 1959). Tactile
stimulation is vital for babies and aids in their
development.
WHAT IS VISUAL THINKING?
Thinking in language and words is alien to me. I think
totally in pictures. It is like playing different
tapes in a video cassette recorder in my imagination.
I used to think that everybody thought in pictures
until I questioned many different people about their
thinking processes.
I have conducted an informal little cognitive test on
many people. They are asked to access their memory of
church steeples or cats. An object that is not in the
person’s immediate surroundings should be used for
this visualization procedure. When I do this, I see in
my imagination a series of “videos” of different
churches or cats I have seen or known. Many “normal”
people will see a visual image of a cat, but it is a
sort of generalized generic cat image. They usually
don’t see a series of vivid cat or church “videos”
unless they are an artist, parent of an autistic
child, or an engineer. My “cat” concept consists of a
series of “videos” of cats I have known. There is no
generalized cat. If I keep thinking about cats or
churches I can manipulate the “video” images. I can
put snow on the church roof and imagine what the
church grounds look like during the different seasons.
Some people access their “cat” knowledge as auditory
or written language. For me, there is no language
based information in my memory. To access spoken
information, I replay a “video” of the person talking.
There are some brilliant people who have little visual
thought. One totally verbal professor told me that
facts just come to his mind instantly with no visual
image. To retrieve facts, I have to read them off a
visualized page of a book or “replay the video” of
some previous event. This method of thinking is
slower. It takes time to “play” the videotape in my
imagination.
Research findings indicate that verbal thought and
visual thinking work via different brain systems
(Farah 1989; Zeki 1992). Studies of patients with
brain damage indicate that one system can be damaged,
while another system may be normal. The brain is
designed with modular systems. These systems may work
either together or separately to perform different
tasks. For example, people with certain types of brain
damage can recognize objects with straight edges, but
they cannot recognize objects with irregular edges.
The brain module that recognizes irregular shapes has
been damaged (Weiss 1989). In autism, the systems that
process visual-spatial problems are intact. There is a
possibility that these systems may be expanded to
compensate for deficits in language. The nervous
system has remarkable plasticity; one part can take
over and compensate for deficits in language. The
nervous system has remarkable plasticity; one part can
take over and compensate for a damaged part
(Huttenlocher 1984). A functional MRI study by Ring et
al. (1999) indicates that people with autism depend
more on the visual parts of the brain on an embedded
figures test.
Using Visualization
Visual thinking is a great asset in my career as a
livestock equipment designer, and I have become
internationally recognized in this field. Drafting
elaborate drawings of steel and concrete livestock
stockyards and equipment is easy. I can visualize a
video of the finished equipment in my imagination. I
can run test simulations in my imagination of how the
systems would work with different size cattle.
Discussions with other autistic people have revealed
visual methods of thinking on tasks that are often
considered sequential and nonvisual. A brilliant
autistic computer programmer told me that he
visualized the entire program tree in his mind and
then filled in the program code on each branch. A
gifted autistic composer told me that he made “sound
pictures”. In all these cases, a hazy whole or gestalt
is visualized, and the details are added in a
non-sequential manner. When I design equipment, I
often have a general outline of the system, and then
each section of it becomes clear as I add details.
When I solve a scientific problem or review the
scientific literature, I do it non- sequentially. The
process is like trying to figure out what the picture
on a jig saw puzzle is, when only some of the pieces
are put together. A piece is put on one corner and
then another corner and after about one fourth of the
pieces are in place, a person can tell that the puzzle
has a picture of a house on it.
As a child and as a young adult, I was good at
building things, but it took time to learn how the
symbolic lines on a set of engineering drawings
related to the “video” of a house or a piece of
equipment that was in my imagination. After I learned
to read engineering drawings, I could then instantly
translate the symbols on the drawings into a
visualization of the finished structure. When I was
28, my drafting ability suddenly improved after I
watched a skilled draftsman. I bought a pencil just
like his, and then I copied his style, but the drawing
I made was a new design. When the drawing was finished
I could “play the video” and “test” the equipment to
see if it would work. Visual thinking is not a fast
method of thinking. It takes time to “play” the
“video.” I am unable to instantly access my memory. An
accountant with autism wrote to me and explained that
he had to think slowly at his desk, but he could solve
problems that were difficult for other accountants.
Visual thinking is also associated with being
intellectually gifted. Albert Einstein was a visual
thinker who failed his high school language
requirement and relied on visual methods of study
(Holton 1971-72). His theory of relativity was based
on visual imagery of moving boxcars and riding on
light beams. Einstein’s family history includes a high
incidence of autism, dyslexia, food allergies, high
intellectual aptitude, and musical talent, and he
himself had many autistic traits – an astute reader
can find evidence of them in Einstein and Einstein
(1987). Other great scientists such as Leonardo de
Vinci, Faraday and Maxwell were visual thinkers (West
1991).
Intellectual giftedness is common in the family
histories of many persons with autism. In my own
family history, my great grandfather on my father’s
side was a pioneer who started the largest corporate
wheat farm in the world. One sister is dyslexic and is
brilliant in the art of decorating houses.
When I think about abstract concepts, such as
relationships with people, I use visual images, such
as a sliding glass door. Relationships must be
approached gently because barging forward too quickly
may shatter the door. Thinking about the door was not
enough; I had to actually walk through it. When I was
in high school and college, I had actual, physical
doors that symbolized major changes in my life, such
as graduations. At night, I climbed through a trap
door on the roof of the dormitory to sit on the roof
and think about life after college. The trap door
symbolized graduation. The doors were a visual
language for expressing ideas that are usually
verbalized.
Park and Youderian (1974) also report use of visual
symbols, such as doors, to describe abstract concepts.
Visualization enabled me to understand the Lord’s
Prayer. “The power and the glory” were high-tension
electric towers and a blazing rainbow sun. I visualize
the word trespass as a “No Trespassing” sign on the
neighbor’s tree.
I no longer use sliding doors to understand personal
relationships, but I still have to relate a particular
relationship with something I have read or
experienced. For example, a fight between my neighbors
was like the United States and Europe fighting over
customs duties. All my memories are visual images of
specific events. New thoughts and equipment designs
are combinations and rearrangements of things I have
previously experienced. I have a need to see and
operate all types of livestock equipment because that
programs the “visual computer.”
Park (1967) also explained that her daughter learned
nouns first. Nouns are easy because they can be
associated with pictures in one’s mind. Inappropriate
words are often used. For example, the name Dick was
used to refer to painting. This happened because
Park’s daughter saw a picture of Dick painting
furniture in a book. Park (1967) also describes why
her daughter had problems with pronoun reversal and
won’t use the word I. She thinks her name is you
because that’s what people call her. Charlie Hart
summed up autistic thinking with this statement about
his autistic son Ted: “Ted’s thought precesses aren’t
logical, they are associational” (Hart 1989). The
autistic person’s visual thinking methods may explain
some of the “Theory of Mind” problems that Frith
(1989) outlines. Visual and associational thinking
would explain Frith’s observation that a child may say
“French toast” when he or she is happy.
I still have difficulty with long strings of verbal
information. If verbal directions contain more than
three steps, I have to write them down. Many autistics
have problems with remembering the sequence of a set
of instructions. Children with autism perform best
with written instructions that they can refer to,
compared to verbal instructions or a demonstration of
a task, which require remembering a sequence of steps
(Boucher and Lewis 1989).
Algebra is almost impossible, because I can’t make a
visual image, and I mix up steps in the sequence of
doing a problem. I have many dyslexic traits, such as
reversing numbers and mixing up similar sounding words
such as over and other. Learning statistics was
extremely difficult, because I am unable to hold one
piece of information in my mind while I do the next
step. I had to work with a tutor and write down the
directions for doing each test. Every time I do a
statistical test, I have to use notes. It is easy to
understand the principles of statistics, because I can
visualize the normal or skewed population
distributions. The problem is, I cannot remember the
sequence for doing the calculations.
Donna Williams (1992), an autistic woman from
Australia, describes similar difficulties. She was
unable to learn math until she watched the teacher
write out each step. Like me, she had to see every
step written on paper. If the smallest step is left
out, the autistic mind will be stumped. The visual
image of all the written steps is essential. Donna
also became frustrated because her calculator did not
have an “of” button for finding percents. Words that
have no concrete visual meaning such as “put” or “on”
need to be seen in written form in order to be heard
and remembered (Park 1967). Written language is easier
to understand than verbal language. Word processors
should be introduced early to encourage writing.
Typing is often easier than hand writing. Many
autistics have motor control problems that result in
messy illegible writing. Even highly verbal people
with autism can often express themselves better using
the written or typed word. When I want to describe how
I really feel about something, I can express myself
better in writing.
COMMUNICATION
I screamed because it was the only way I could
communicate. When adults spoke directly to me, I could
understand everything they said. When adults talked
among themselves, it sounded like gibberish. I had the
words I wanted to say in my mind, but I just could not
get them out; it was like a big stutter. When my
mother wanted me to do something, I often screamed. If
something bothered me, I screamed. This was the only
way I could express my displeasure. If I did not want
to wear a hat, the only way I could communicate my
desire not to wear the hat was to throw it on the
floor and scream. Being unable to talk was utter
frustration. I screamed every time my teacher pointed
the pointer towards me. I was afraid because I had
been taught at home never to point a sharp object at a
person. I feared that the pointer would poke out my
eye.
The speech therapist had to put me in a slight stress
state so I could get the words out. She would gently
hold me by the chin and make me look at her and then
ask me to make certain sounds. She knew just how much
to intrude. If she pushed too hard, I would have a
tantrum; if she did not push enough, there was no
progress. During recent visits to autism programs, I
have observed this technique being used in many
different types of programs. When I started to speak,
my words were stressed with an emphasis on vowel
sounds. For example, “bah” for ball. My speech
therapist stretched out the hard consonant sounds to
help my brain to perceive them. She would hold up a
cup and say lccc u ppp.n Vowels are easier to hear
than consonants. My speech and language problems were
similar to the loss of speech that occurs in children
who have had brain surgery to remove tumors in the
cerebellum and cerebellar vermis (Rekate et al. 1985).
The children lost speech and then regained their
ability to speak a few stressed words at a time. The
ability to understand speech remained normal.
Courchesne et al. (1988) and Murakami et al. (1989)
found that in moderate to high-functioning autistics,
a high percentage had either an undersized cerebellum
or abnormalities of the cerebellar vermis. In my own
case, MRI brain scans revealed that my cerebellar
hemispheres are smaller than normal.
AUTISM SUBTYPES
What is the difference between PDD (Pervasive
Developmental Disability), Autism, Asperger’s
Syndrome, etc.? It is doubtful that there are black
and white boundaries between the different diagnostic
categories. It is likely that there is a continuum
where each diagnostic category merges into the next
one in many varied shades of gray. Even though the
different types of autism are on a continuum the
characteristics of the different types can be
different. It is well known that different types of
autism respond differently to various drugs. From a
treatment standpoint, they are apples and oranges, but
from a neurological standpoint, the differences may be
less distinct. The different subtypes of autism may
also differ from an emotional standpoint as well. As
one moves from one end of the subtypes spectrum to the
other, emotions may vary from a lack of affect to more
normal emotions.
During talks with hundreds of parents and reading in
scientific literature I have divided autism diagnosis
into two broad categories: 1) Kanner/Asperger Types
(named after the doctors who discovered autism)
(Kanner 1943 and Asperger 1944) and 2) the
Epileptic/Regressive Types. Fragile X, Retts Syndrome,
known fetal damage and damage due to high fevers are
not included.
Both types probably have a strong genetic basis. Talks
with parents indicate that they both have the same
family history profile (Grandin 1992a). An interview
with Margaret Bauman indicated that both types have
the same pattern of brain abnormalities (Bauman 1991,
and Bauman and Kemper 1994). During her autopsy
studies, she examined both types. Possibly the
different clinical symptoms between the two types can
be explained in subtle variations of brain abnormality
within the larger framework of a basic abnormality in
the limbic system, hippocampus, amygdala, and
cerebellum.
Kanner/Asperger Type
Asperger’s Syndrome is probably a milder type of
traditional Kanner type high- functioning autism.
People with Asperger’s syndrome can often function
better in the community and have more normal speech
and thinking patterns. Research by Bowler (et al.
1992) at the University of London indicates that they
can solve a simple “Theory of Mind” problem that
traditional high-functioning autistics fail. An
example of Theory of Mind problem is: “Peter thinks
that Jane thinks etc.” Both the Kanner and Asperger
types have deficits in flexible problem solving,
facial recognition, and fine motor speed coordination.
Testing at the University of Denver by Ozonoff (et al.
1991) indicates that both types do poorly on the
Wisconsin Card Sorting Test which is a test of
flexible problem solving. Most people with autism are
visual thinkers, but there are some people with
Asperger’s syndrome who are good with numbers and have
poor visual skills.
Kanner/Asperger types can range from individuals with
rigid thinking patterns and a relatively calm
temperament to people with more normal thinking
patterns with lots of anxiety and sensory sensitivity
problems. Many of the individuals have flat affect.
Charlie Hart’s (1989) excellent book, Without Reason,
describes examples of the first type and my book,
Thinking in Pictures(1995), and Annabelle Stehli’s
(1991) book, Sound of a Miracle, describes the second
type.
Medications for Kanner/Asperger Types
At puberty, I had severe problems with anxiety,
nervousness, and sensitivity to touch and sound. The
anxiety felt like a constant state of stage fright for
no reason. On the worst days I felt like I was being
stalked by a gunman. Proper use of the right
medication changed my life. My speech became more
modulated, and I became more social when the anxiety
eased. The individuals with anxiety and nervousness
problems are likely to respond well to small doses of
antidepressant drugs such as clomipramine (McDougal et
al. 1992 and Gordon et al. 1993) and fluoxetine (Cook
et al. 1992). Low doses of antidepressant drugs must
be used to prevent problems with agitation and
irritability.
Several papers I have read on the use of
antidepressants in autism have stated that the
beneficial effect of the drug wore off in several
weeks or months. When the dose was raised, there were
problems with insomnia, restlessness, and agitation.
These side effects are caused by an overdose of the
antidepressant; and if they occur, the dose must be
immediately lowered. I have been on the same low dose
for twenty years. When I first stated taking
antidepressants, the effect wore off in four months
and the anxiety returned. I remained on the same dose
and the drug started to work again several weeks
later. If the effect of an antidepressant appears to
wear off and anxiety or bad behaviors returns do not
raise the dose. Remain on the same dose and the
antidepressant will usually start working again after
the relapse period passes. Find the lowest dose that
works effectively and NEVER raise it. Fluoxetine is
recommended if the EEG shows abnormalities because it
is less likely to cause an epileptic seizure. Another
advantage of fluoxetine is it has fewer uncomfortable
side effects. Anecdotal reports from other adults with
autism indicate that fluoxetine improved their lives.
Fluoxetine and other antidepressants should be used
very sparingly in children.
The use of powerful medications in young children is a
controversial area. Medications given when the brain
is developing may possibly have a permanent effect on
the development of neurotransmitter systems. Some
medications may be very harmful, but there is also a
possibility that some may be beneficial. One must
always balance risk versus benefit. A good rule of
thumb is that a medication should have an obvious,
fairly dramatic effect. Research has shown that very
young autistic children have abnormally low levels of
serotonin in their brain compared to normal children
(Chugani et al., 1999). Medications such as fluoxetine
and other serotonin reuptake inhibitors will increase
serotonin levels in the brain. Maybe this would be
good for the young autistic brain. Rat research has
now shown that fluoxetine may promote the development
of serotonin circuits in the brain (Wegerer et al.,
1999). At this time nobody knows if fluoxetine is good
or bad for young autistic children.
Regressive/Epileptic Type
These individuals often have more obvious neurological
problems, and their ability to understand speech is
often poor. Even though they may pass a standard pure
tone hearing test, they may not be able to hear
complex speech sounds. Some of them cannot follow a
simple command like “put the book on your head.”
Volkmar and Cohen (1989) were the first researchers to
identify the regressive or “late onset” form of
autism. Many of these children have signs of subtle
epileptic seizure activity, such as staring and
“spacing out.” Some of these individuals may have
sensory jumbling and mixing; whereas Kanner/Asperger
Types have good receptive speech and can understand
what people are saying. Regressives may just hear a
jumble of noise. Sands and Ratey (1986) describe this
as the concept of noise. Allen and Rapin 1993) state
that children with autistic behavior that are totally
mute, with no receptive speech, have to be introduced
to language through the visual modality. Some of these
children may learn to speak when they are taught to
read.
Many regressive/epileptic children are labeled low
functioning and have low IQ scores. Some may be
retarded, but others may receive a low-functioning
label because their sensory processing problems make
communication difficult. Conversations with many
parents indicate that this group is most likely to
have a favorable response to vitamins B6, magnesium,
(Rimland 1988) or DMG supplements (Rimland 1990).
Researchers in France have documented that B6 and
magnesium supplements are effective (Martineau et al.
1985, 1986).
Anticonvulsants such as valproic acid or ethosuximide
may be useful in improving speech and the ability to
understand speech in three to five year old nonverbal
autistic children (Plioplys 1994, Gillberg, 1991).
Fankhauser et al. (1992) and Jaselskis et al. (1993).
Both report that clonidine is beneficial for behavior
problems. Recently there has been a concern about the
safety of clonidine in children. Dr. Ed Cook reports
that clonidine wears off in several months if it is
given continually. He recommends using it only when
needed to help a child or an adult sleep and not
giving it during the day. One must always balance risk
versus benefit. Both reports from parents and a report
by Ricketts (1993) indicate that fluoxetine is useful
for reducing self-injury. Serious behavior problems
sometimes occur at puberty and autistic teenagers and
adults may have severe rage or aggression. Beta
blockers such as propranolol are effective for
reducing severe aggression in adults (Ratey et al.
1987). Dr. Ratey has also found that risperidone will
control aggression and rages which may not respond to
other medications.
Dr. Joe Huggins has been working for years with
teenagers and adults to find effective medication
regimes for very severe aggression and rage. Dr.
Huggins reports that risperidone must be give in very
low doses to be most effective. This medication
affects both the serotonin and dopamine systems in the
brain. Very low doses, which may be as low as one
quarter of the normal starting dose, are recommended.
An extremely low dose will only affect the serotonin
system, and it will stay out of the dopamine system.
One bad side effect of risperidone, in some people
with autism, is high weight gain. Xyprexe (olanzapine)
has worse weight gain.
An interview with Dr. Huggins indicated that he has
three basic medications that he uses in
low-functioning adults and teenagers who have
difficulty managing aggression, rage or self-injury.
They are risperidone, valproic acid and propranolol.
He uses these three medications either singly or in
various combinations. Dr. Huggins recommends very low
doses of 0.5 to 1.5 mg of risperidone for controlling
rage in autistic teenagers and adults. Risperidone is
most effective for alpha type rage where the rage is
directed at a specific person. The maximum dose of
risperidone is 2 mg. to prevent it from getting into
the dopamine system. Too high a dose is less effective
for reducing anxiety.
For beta type rage which is diffuse and not directed at a specific target, Dr.
Huggins has had success with beta blockers such as
propranolol. People that are hot and sweaty often
respond well to propranolol. In non-verbal or poorly
verbal people with autism, Dr. Huggins avoids most of
the SSRIs, such as Prozac (fluoxetine), due to
problems with interactions with risperidol. Paroxetine
(Paxil) and fluvoxamine (Luvox) interact badly with
risperidone. Dr. Huggins prefers celexa (citalopram)
if an SSRI has to be mixed with risperidone because it
is the SSRI with the fewest problems with interaction.
If the aggressive outburst follows a cycle where they
come and go, Dr. Huggins will often prescribe valproic
acid. For the lower functioning people with autism,
his basic choices for medication for controlling
severe behavior are: one low dose risperidone,
valproic acid and propranolol. For high functioning
teenagers and adults with autism, one of the SSRIs,
such as fluoxetine or one of the other SSRIs, is often
the best medication to use where a single medication
can be used to control both depression and anxiety.
Many high functioning people are doing very well on a
single SSRI such as Prozac (fluoxetine). Dr. Huggins
has also reported that a combination of a reduced
sugar diet and propranolol was more effective than
propranolol alone.
Dr. Huggins publications can be ordered by calling
416-449-5511 or 416-445-3032 (also,
www.Bitemarks.com). His spiral bound booklet titled
`Diagnostic and Treatment Model for Managing SIB, Rage
and other Hyperadrenergic Behaviors in the Autistic,
PDD, and DD Populations’ can be obtained by
contacting: Kerry’s Place, 34 Berczy St., Suite 190,
Aurora, Ontario, Canada, L4G 1W9; Fax: 905-841-1461.
Outbursts of aggression in autistic teenagers and
adults are sometimes caused by frontal or temporal
lobe seizures. These seizures (epileptic episodes) are
often difficult to detect on an EEG (Gedye 1989,
1991). Seizures should be suspected if the rages occur
totally at random. Most other types of aggression or
rage are usually triggered by some event such as
frustration with communication, painful sensory
stimuli or an unexpected change in routine. If
epilepsy is suspected, the teenager may respond
positively to either carbamazepine, valproic acid or
divalproex sodium (Gedye et al. 1989, 1991). Calcium
supplements may help prevent severe self-abuse such as
eye gouging (Coleman 1994).
When a medication is used, careful observations should
be made to determine if it is really effective. As I
stated before, one must balance the risk against the
benefit. To avoid dangerous drug interactions consult,
consult Graedon and Graedon (1995). Grapefruit juice
should be avoided. It interacts badly with certain
medications. One must ask the question: Does this
medication provide sufficient benefit to make it worth
the risk? In a nonverbal individual, a careful medical
examination is recommended to look for hidden painful
medical problems which could be causing either
self-injury or aggression. Look for ear infections,
tooth aches, digestive problems, headaches and sinus
problems.
EDUCATIONAL STRATEGIES AND SUBTYPES
A teaching and therapy program that worked well for me
may be painful and confusing to some nonverbal lower
functioning, regressive/epileptic people with autism.
My speech therapist forced me to look at her. I needed
to be jerked out of my autistic world and kept
engaged. Some children with more severe sensory
problems may withdraw further because the intrusion
completely overloads their immature nervous system.
They will often respond best to gentler teaching
methods such as whispering softly to the child in a
room free of florescent lights and visual
distractions. Donna Williams (1994) explained that
forced eye contact caused her brain to shut down. She
states when people spoke to her, “their words become a
mumble jumble, their voices a pattern of sounds”
(Painter 1992). She can use only one sensory channel
at a time. If Donna is listening to somebody talk, she
is unable to perceive a cat jumping up on her lap. If
she attends to the cat, then speech perception is
blocked. She realized a black thing was on her lap,
but she did not recognize it as a cat until she
stopped listening to her friend talk.
She explained that if she listens to the intonation of
speech, she can’t hear the words. Only one aspect of
incoming input can be attended to at a time. If she is
distracted by the visual input of somebody looking in
her face, she can’t hear them. Other people with
autism have explained that they had a difficult time
determining that speech was used for communication.
Kins, a man with autism, further explained that if
somebody looked him in the eye, “My mind went blank
and thoughts stop; it was like a twilight state.”
Cesaroni and Garber (1991) also describe confusing and
mixing of sensory channels. Jim, a man with autism,
explained, “Sometimes the channels get confused, as
when sounds came through as color.” He also said that
touching the lower part of his face caused a sound-
like sensation. Donna told me that she sometimes has
difficulty determining where her body boundary is.
Cesaroni and Garber (1991) also noted problems with
locating a tactile stimulus. The tendency of some
autistic people to constantly touch themselves and
objects around them may be an attempt to stabilize
body and environmental boundaries. Therese Joliffe, an
autistic woman, explained that it was easier to learn
by touch because touch was her most accurate sense
(Joliffe et al. 1992). Donna told me that sensory
integration treatment, consisting of rubbing her skin
with brushes, has helped. Even though she disliked the
tactile input from the brushes, she reported that it
helped her different sensory systems to work together
and become more integrated. Her sensory processing
also becomes more normal when she is relaxed and is
focusing on only one sensory channel. Donna may be
half way along the continuum between the
Kanner/Asperger Type and the Regressive Epileptic
Type.
Patterns of Neurological Abnormalities
Both Kanner/Asperger Types and the
Regressive/Epileptic Types have abnormalities of the
cerebellum (Bauman 1991, Bauman and Kemper 1994).
Cerebellar abnormalities may explain the sound and
touch sensitivity problems observed in most forms of
autism. Research on rats indicates that the vermis of
the cerebellum modulates sensory input (Crispino and
Bullock 1984). Stimulation of the cerebellum with an
electrode will make a cat hypersensitive to both sound
and touch (Chambers 1947). The cerebellum may act as a
volume control for hearing, vision, and touch.
Courchesne et al. (1988) found that many
high-functioning Kanner/Asperger autistic people have
abnormalities of the cerebellar vermis.
Kanner/Asperger Types may also have a smaller than
normal cerebellum. MRI scans of my own brain indicated
my cerebellum is 20 percent smaller than normal; and
an autistic computer genius with ultra classical
Kanner Type autism has a cerebellum that is 30 percent
smaller than normal.
As discussed previously, the more severely impaired
Regressive/Epileptic Type autistic people have much
greater sensory processing problems. Most
Kanner/Asperger Types do not experience sensory
jumbling, and they can attend to simultaneous visual
and auditory input. In more severe cases, such as
Williams (1993) and Cesaroni and Garber (1991),
sensations from the eyes and ears can mix together.
Individuals with autism process information very
slowly, and they must be given time to respond.
Nonverbal adults will process sensory input more
slowly than verbal adults. Some individuals with very
severe sensory processing problems may take several
hours to recover after experiencing sensory overload.
Gillingham (1995) contains an excellent review of
autistic sensory problems.
Parents often ask, khow can I tell how severe my childms sensory problems are?m
Children and adults that have tantrums every time they
go in a large supermarket or shopping mall usually
have severe sensory processing problems. Children and
adults who enjoy shopping in big stores usually have
less severe sensory problems. The degree of sensory
processing problems will vary greatly from case to
case. It can vary from mild sound sensitivity to
sensory jumbling and mixing. Lewis (1993) describes
her son who may be mid-way between Kanner Type and
Regressive/Epileptic Type. He does not have the rigid
thinking of a typical Kanner Type, and he understands
the give and take of conversations. However, he has
signs of serious sensory processing problems, because
he does self-stimulatory behaviors in nearly every
sensory modality. Possibly, this may be due to brain
stem abnormalities in addition to the cerebellar
abnormalities. Hashimoto et al. (1992) found that
low-functioning autistic people with low IQ scores had
smaller brain stems. McClelland et al. (1992) also
found that low-functioning individuals were more
likely to have abnormal results on a central
conduction time test, which is a measure of brain stem
function.
McClelland et al. (1992) believe that autistic people
have a defect in myelinization. This would account for
the frequent occurrence of epilepsy and abnormal brain
stem- evoked potentials in older autistic children.
Myelin forms the fatty sheaths around neurons. It is
like insulation on electrical wires. The lack of
myelinization may also account for the mixing of
sensory input from the eyes and ears and mind blank
outs that occur when an autistic person becomes
excited. The “space out” and jumbling may be due to
miniature epileptic seizures that occur between the
poorly myelinated neurons. Jim, one of the autistic
people that Cesaroni and Garber (1991) interviewed,
theorizes that certain frightening sounds can act as a
trigger for disorganization of processing, similar to
epileptic seizures that a flashing light can trigger.
CAUSE OF AUTISM
Autism is a neurological disorder that is not a result
of psychological factors. A complex inheritance of
many interacting genetic factors cause most cases of
autism. There is a continuum from normal to abnormal.
Autistic traits often show up in a mild degree in the
parents, siblings, and close relatives of an autistic
child (Narayan et al. 1990; Landa et al. 1992). Some
of the traits that seemed to be associated with autism
are: intellectual prowess, shyness, learning
disabilities, depression, anxiety, panic attacks,
Tourettes (tic disorder), and alcoholism (Narayan et
al. 1990; Sverd 1991).
There is a high correlation between Asperger’s syndrome and manic depression
(Delong and Dyer 1988). Possibly a small amount of
these genetic traits confers an advantage, such as
high intelligence or creativity; too many of the
traits will cause problems (Clark 1993) Other causes
of autism are the Fragile X gene, insults to the
fetus, such as Rubella or other viruses, and high
fevers at a young age.
Brain autopsy research (Bauman 1991, Bauman and Kemper
1994) and MRI studies (Courchesne et al. 1988;
Hashimoto et al. 1992) indicate that people with
autism have structural abnormalities in the brain.
Certain areas of the brain, such as the limbic system
and cerebellum are immature. Other studies have shown
that lower functioning people with autism also have
abnormally slow transmission of nerve impulses through
the brain stem (McClelland et al. 1993) and immature
EEG patterns (Cantor et al. 1986). Dr. Patricia Rodier
(2000) explains that the brain abnormalities that
cause autism occur very early in the developing
embryo. Her research has shown that there are defects
in the developing brain stem that happened near the
end of the first month of pregnancy. A structure
called kthe superior olivem is missing in the brain
stem. This may explain the lack of cerebellum
development in autism. In summary, autism is a
disorder in which some parts of the brain are
underdeveloped and other parts may be overdeveloped.
This may be a possible explanation for why some
autistic people have enhanced visual and savant
skills.
CONCLUSIONS
Teachers, therapists and other professionals who work
with autistic people need to recognize and treat
sensory processing problems in autism. Treatment
programs that are appropriate and beneficial for one
type of autism may be painful for other types. At ages
two to four, many autistic children will probably
respond well to gently intrusive programs where the
child is required to maintain eye contact with the
teacher. Lovaas (1987) has documented that roughly
half of young children will improve sufficiently so
they can be enrolled in a normal first grade at age
six or seven.
It is likely that the children who did
not improve in the Lovaas program were experiencing
sensory overload. They may respond better to a gentler
approach using only one sensory channel at a time. As
children get older they tend to separate into two
groups. Children like me who can be “jerked” out of
the autistic world and asked to pay attention, and
individuals like Donna Williams and Therese Joliffe
who require a gentler approach. The prognosis of both
types of children will be improved if they receive a
minimum of 20 hours a week of good educational
programming between the ages of two and five. Both
types of young autistic children MUST be prevented
from shutting out the world. They have to be kept
engaged so that their brains can develop more
normally. For one type of child the teacher can “jerk
open the front door;” and for the other type, the
teacher must “sneak quietly through the back door.”
Table 1
Autism Subtypes
These subtypes are on a continuum that merges
together. Information in the table is based on
scientific literature and interviews with autistic
people, teachers and parents.