VISUAL THINKING, SENSORY
PROBLEMS
& COMMUNICATION DIFFICULTIES
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
behaviors 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 processes 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 “ccc u ppp.” 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 syndrome, 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, ‘how can I tell how severe my child’s sensory problems are?’
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, Tourette
syndrome (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 ‘the
superior olive’ 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."
© Copyright Temple Grandin.
Reproduction kindly allowed by www.autism.org
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