INTRODUCTION
I am a 44-year old autistic woman who has a successful
international career designing livestock equipment.
I completed my Ph.D. in Animal Science at the University
of Illinois in Urbana and I am now an Assistant
Professor of Animal Science at Colorado State University.
Early intervention at age 2 1/2 helped me overcome
my handicap.
Two of the subjects covered in this chapter are
the frustration of not being able to speak and
sensory problems. My senses were oversensitive
to loud noise and touch. Loud noise hurt my ears
and I withdrew from touch to avoid over-whelming
sensation.
I built a squeezing machine which helped me to
calm my nerves and to tolerate touching. At puberty,
horrible anxiety "nerve" attacks started
and they became worse with age. Antidepressant
medication relieved the anxiety. In the last section
of the chapter directing my fixations into constructive
activities and a career will be discussed along
with the importance of a mentor. My skill and
deficit areas are covered in detail. All my thinking
is visual, like videos played in my imagination.
Even abstract concepts such as getting along with
other people are visualized through the use of
door imagery.
LACK OF SPEECH
Not being able to speak was utter frustration.
If adults spoke directly to me I could understand
everything they said, but I could not get my words
out. It was like a big stutter. If I was placed
in a slight stress situation, words would sometimes
overcome the barrier and come out. My speech therapist
knew how to intrude into my world. She would hold
me by my chin and made me look in her eyes and
say "ball." At age 3, "ball"
came out "bah," said with great stress.
If the therapist pushed too hard I threw a tantrum,
and if she did not intrude far enough no progress
was made. My mother and teachers wondered why
I screamed. Screaming was the only way I could
communicate. Often I would logically think to
myself, "I am going to scream now because
I want to tell somebody I don't want to do something."
It is interesting that my speech resembled the
stressed speech in young children who have had
tumors removed from the cerebellum. Rekate, Grubb,
Aram, Hahn, and Ratcheson (1985) found that cancer
surgeries that lesioned the vermus, deep nuclei,
and both hemispheres of the cerebellum caused
temporary speech loss in normal children. Vowel
sounds were the first to(1) return, and receptive
speech was normal. Courchesne, Yeung-Courchesne,
Press, Hesselink, and Jernigan (1988) reported
that 14 out of 18 high- to moderate- functioning
autistics had undersized cerebellar vermal lobules
VI and VII. Bauman and Kemper (1985) and Ritvo
et al. (1986) also discovered that brains from
autistics had lower than normal Purkinje cell
counts in the cerebellum. In my own case an MRI
scan revealed cerebellar abnormalities. I am unable
to tandem walk (the standard "walk the line"
test done by the police for drunken drivers).
I end up toppling sideways, but my reactions are
normal for other simple motor tests of cerebellar
dysfunction.
Vestibular stimulation can sometimes stimulate
speech in autistic children. Slowly swinging a
child on a swing can sometimes help initiate speech
(Ray, King, & Grandin, 1988). Certain types
of smooth, coordinated movements are difficult
for me, even though I appear normal to the casual
observer. For example, when I operate hydraulic
equipment that has a series of levers, I can operate
one lever at a time perfectly. Coordinating the
movement of two or three levers at once is impossible.
This may explain why I do not readily learn a
musical instrument, even though I have innate
musical talent for pitch and melody. The only
musical instrument I mastered is whistling with
my mouth.
RHYTHM AND MUSIC
Throughout elementary school my speech was still
not completely normal. Often it took me longer
than other children to start getting my words
out. Singing, however was easy. I have perfect
pitch and I can effortlessly hum back the tune
of a song I have heard only once or twice.
I still have many problems with rhythm. I can
clap out a rhythm by myself, but I am unable to
synchronize my rhythm with somebody else's rhythm.
At a concert I am unable to clap in time with
the music with the rest of the people. A lack
of rhythm during autistic piano playing is noted
by Park and Youderian (1974). Rhythm problems
may be related to some autistic speech problems.
Normal babies move in synchronization with adult
speech (Condon & Sander, 1974). Autistics
fail to do this. Condon (1985) also found that
autistics and, to a lesser extent, dyslexics and
stutterers have a defective orienting response.
One ear hears a sound sooner that the other. The
asynchrony between ears is some- times over one
second. This may help explain certain speech problems.
People still accuse me of interrupting. Due to
a faulty rhythm sense, it is difficult to determine
when I should break into a conversation. Following
the rhythmic ebb and rise of a conversation is
difficult.
AUDITORY PROBLEMS
My hearing is like having a hearing aid with the
volume control stuck on "super loud."
It is like an open microphone that picks up everything.
I have two choices: turn the mike on and get deluged
with sound, or shut it off. Mother reported that
sometimes I acted like I was deaf. Hearing tests
indicated that my hearing was normal. I can't
modulate incoming auditory stimulation. Many autistics
have problems with modulating sensory input (Ornitz,
1985). They either overreact or under-react. Ornitz
(1985) suggests that some cognitive deficits could
be caused by distorted sensory input. Autistics
also have profound abnormalities in the neurological
mechanisms that control the capacity to shift
attention between different stimuli (Courchesne,
1989).
I am unable to talk on the phone in a noisy office
or airport. Everybody else can use the phones
in a noisy environment, but I can't. If I try
to screen out the background noise, I also screen
out the phone. A friend of mine, a high-functioning
autistic, was unable to hear a conversation in
a relatively quiet hotel lobby. She has the same
problem I have, except worse.
Autistics must be protected from noises that
bother them. Sudden loud noises hurt my ears like
a dentist's drill hitting a nerve. A gifted, autistic
man from Portugal wrote, "I jumped out of
my skin when animals made noises" (White
& White, 1987). An autistic child will cover
his 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. Cerebellar abnormalities may play
a role in increased sound sensitivity. Research
on rats indicates that the vermus of the cerebellum
modulates sensory input (Crispino & Bullock,
1984). Stimulation of the cerebellum with an electrode
will make a cat hypersensitive to sound and touch
(Chambers, 1947).
I still dislike places with confusing noise,
such as shopping malls. High-pitched continuous
noises 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 is bombarded
with noises that blast through his brain like
a jet engine. High, shrill noises were the worst.
A low rumble has no effect, but an exploding firecracker
hurts my ears. As a child, my governess used to
punish me by popping a paper bag. The sudden,
loud noise was torture.
Even now, I still have problems with tuning out.
I will be listening to a favorite song on the
radio, and then realize I missed half of it. My
hearing just shuts off. In college, I had to constantly
keep taking notes to prevent tuning out. The young
man from Portugal also wrote that carrying on
a conversation was very difficult. The other person's
voice faded in and out like a distant radio station
(White & White, 1987).
TACTILE PROBLEMS
I often misbehaved in church, because the petticoats
itched and scratched. Sunday clothes felt different
than everyday clothes. Most people adapt to the
feeling of different types of clothing in a few
minutes. Even now, I avoid wearing new types of
underwear. It takes me three to four days to fully
adapt to new ones.
As a child in church, skirts and stockings drove
me crazy. My legs hurt during the cold winter
when I wore a skirt. The problem was the change
from pants all week to a skirt on Sunday. If I
had worn skirts all the time, I would not have
been able to tolerate pants. Today I buy clothes
that feel similar. My parents had no idea why
I behaved so badly. A few simple changes in clothes
would have improved my behavior.
Some tactile sensitivities can be desensitized.
Encouraging a child to rub the skin with different
cloth textures often helps. The nerve endings
on my skin were supersensitive. Stimuli that were
insignificant to most people were like Chinese
water torture. Ayres (1979) lists many good suggestions
on methods to desensitize the tactile system.
APPROACH-AVOID
In my book Emergence: Labeled Autistic (Grandin
& Scariano, 1986), I describe craving pressure
stimulation. It was an approach-avoid situation.
I wanted to feel the good feeling of being hugged,
but when people hugged me the stimuli washed over
me like a tidal wave. When I was 5 years old,
I used to daydream about a mechanical device I
could get into that would apply comforting pressure.
Being able to control the device was very important.
I had to be able to stop the stimulation when
it became too intense. When people hugged me,
I stiffened and pulled away to avoid the all-
engulfing tidal wave of stimulation. The stiffening
up and flinching was like a wild animal pulling
away. As a child, I used to like to get under
the sofa cushions and have my sister sit on them.
At various autism conferences, I have had 30 or
40 parents tell me that their autistic child seeks
deep pressure stimuli. Research by Schopler (1965)
indicated that autistic children prefer (proximal)
sensory stimulation such as touching, tasting,
and smelling to distal sensory stimulation such
as hearing or seeing.
SQUEEZE MACHINE
At age 18 I built a squeezing machine. This device
is completely lined with foam rubber, and the
user has complete control over the duration and
amount of pressure applied. A complete description
of the machine is in Grandin (1983, 1984), and
Grandin and Scariano (1986). The machine pro-
vides comforting pressure to large areas of the
body.
It took me a long time to learn to accept the
feeling of being held and not try to pull away
from it. Reports in the literature indicate that
autistics lack empathy (Bemporad, 1979; Volkmar
& Cohen, 1985). I feel that the lack of empathy
may be partially due to a lack of comforting tactual
input.
One day about 12 years ago, a Siamese cat's reaction
to me changed after I had used the squeeze machine.
This cat used to run from me, but after using
the machine, I learned to pet the cat more gently
and he decided to stay with me. I had to be comforted
myself before I could give comfort to the cat
(Grandin, 1984).
I have found from my own experiences with the
squeeze machine that I almost never feel aggressive
after using it. In order to learn to relate to
people better, I first had to learn how to receive
comfort from the soothing pressure of the squeeze
machine. Twelve years ago I wrote, "I realize
that unless I can accept the squeeze machine I
will never be able to bestow love on another human
being" (Grandin, 1984). During my work with
livestock, I find that touching the animals increases
my empathy for them. Touching and stroking the
cattle makes me feel gentle towards them. The
squeeze machine also had a calming effect on my
nervous system.
Squeeze machines have been in use in clinics
working with autistic and hyperactive children
(Figures 6-1 and 6-2). Lorna King, an occupational
therapist in Phoenix, Arizona, reports that it
has a calming effect on hyperactive behavior.
Therapists have found that deep pressure stimulation
has a calming effect (Ayres,, 1979). Both animal
and human studies have shown that pressure stimulation
reduces nervous system arousal (Kumazawa, 1963;
Melzack, Konrad, & Dubrobsky, 1969; Takagi
& Kobagasi, 1956). Pressure on the sides of
the body will induce relaxation in pigs (Grandin,
Dodman, & Shuster, 1989).
ANXIETY AT PUBERTY
As a child I was hyperactive, but I did not feel
"nervous" until I reached puberty. At
puberty, my behavior took a bad turn for the worse.
Gillberg and Schaumann (1981) describe behavior
deterioration at puberty in many autistics. Shortly
after my first menstrual period, the anxiety attacks
started. The feeling was like a constant feeling
of stage fright all the time. When people ask
me what it is like I say, "Just imagine how
you felt when you did something really anxiety
provoking, such as your first public speaking
engagement.
Now just imagine if you felt that way most of
the time for no reason." I had a pounding
heart, sweaty palms, and restless movements.
The "nerves" were almost like hypersensitivity
rather than anxiety. It was like my brain was
running at 200 miles an hour, instead of 60 miles
an hour. Librium and Valium provided no relief.
The "nerves" followed a daily cycle
and were worse in the late afternoon and early
evening. They subsided late at night and early
in the morning. The constant nervousness would
go in cycles, with a tendency to be worse in the
spring and fall. The "nerves" also subsided
during menstruation.
Sometimes the "nerves" would manifest
themselves in other forms. For weeks I had horrible
bouts of colitis. When the colitis attacks were
active, the feeling of "stage-fright"
nerves went away.
I was desperate for relief. At a carnival I discovered
that riding on the Rotor ride provided temporary
relief. Intense pressure and vestibular stimulation
calmed my nerves. Bhatara, Clark, Arnold, Gunsett,
and Smeltzer (1981) have found that spinning in
a chair twice each week reduces hyperactivity
in young children.
While visiting my aunt's ranch, I observed that
cattle being handled in a squeeze chute sometimes
relaxed after the pressure was applied. A few
days later I tried the cattle squeeze chute, and
it provided relief for several hours. The squeeze
machine was modeled after a squeeze chute used
on cattle. It had two functions: (1) to help relax
my "nerves" and (2) to provide the comforting
feeling of being held. Prior to building the squeeze
machine, the only other way I could get relief
was strenuous exercise or manual labor. Research
with autistics and mentally retarded clients has
shown that vigorous exercise can decrease stereotypies
and disruptive behavior (McGimsey & Favell,
1988; Walters & Walters, 1980). There are
two other ways to fight the nerves: fixate on
an intense activity, or withdraw and try to minimize
outside stimulation. Fixating on one thing had
a calming effect. When I was livestock editor
for the Arizona Farmer Ranchman, I used to write
three articles in one night. While I was typing
furiously I felt calmer. I was the most nervous
when I had nothing to do.
With age, the nerves got worse. Eight years ago,
I had a stressful eye operation that triggered
the worst bout of "nerves" in my life.
I started waking up in the middle of the night
with my heart pounding and obsessive thoughts
about going blind.
MEDICATION
In the next section, I am going to describe my
experiences with medication. There are many autism
subtypes, and a medication that works for me may
be useless for another case. Parents of autistic
children should obtain medical advice from professionals
who are knowledgeable of the latest medical research.
I read in the medical library that antidepressant
drugs such as Tofranil (Imipramine) were effective
for treating patients with endogenous anxiety
and panic (Sheehan, Beh, Ballenger, & Jacobsen,
1980). The symptoms described in this paper sounded
like my symptoms, so I decided to try Tofranil.
Fifty mg of Tofranil at bedtime worked like magic.
Within a week, the feelings of nervousness started
to go away. After being on Tofranil for four years
I switched to 50 mg Norpramin (desipramine), which
has fewer side effects. These pills have changed
my life. Colitis and other stress-related health
problems were cured.
Dr. Paul Hardy in Boston has found that Tofranil
and Prozac (fluoxetine) are both effective for
treating certain high-functioning autistic adolescents
and adults. Both Dr. Hardy and Dr. John Ratey
(personal communication, 1989) have learned that
very small doses of these drugs must be used.
These doses are usually much lower than the dose
prescribed for depression. Too high a dose can
cause agitation, aggression, or excitement, and
too low a dose will have no effect. My "nerve"
attacks would go in cycles, and I have had relapses
while on the drug. It took will power to stick
with the 50 mg dose and let the relapse subside
on its own. Taking the medicine is like adjusting
the idle screw on a car's carburetor. Before taking
the drug, the engine was racing all the time.
Now it runs at normal speed. I no longer fixate,
and I am no longer "driven." Prozac
and Anafranil (clomipramine) have been very effective
in autistics who have obsessive-compulsive symptoms
or obsessive thoughts which race through their
heads. The effective doses for Prozac have ranged
from two 20 mg capsules per week to 40 mg per
day. Too high a dose will cause agitation and
excitement. If an autistic person becomes agitated
the dose should be lowered. Other promising drugs
for aggressive autistic adolescents and adults
are beta blockers. Beta blockers greatly reduce
aggressive behavior (Ratey et al., 1987).
SLOW IMPROVEMENT
During the eight years I have been taking antidepressants,
there has been a steady improvement in my speech,
sociability, and posture. The change was so gradual
that I did not notice it. Even though I felt relief
from the "nerves" immediately, it takes
time to unlearn old behavior patterns.
Within the last year, I had an opportunity to
visit an old friend who had known me before I
started taking antidepressants. My friend, Billie
Hart, told me I was a completely different person.
She said I used to walk and sit in a hunched-over
position and now my posture is straight. Eye contact
had improved and I no longer shifted around in
my chair. I was also surprised to learn that I
no longer seemed to be out of breath all the time,
and I had stopped constantly swallowing.
Various people I have met at autism meetings
have seen steady improvement in my speech and
mannerisms throughout the eight-year period I
have taken the medicines. My old friend, Lorna
King, also noticed many changes. "Your speech
used to seem pressured, coming in almost explosive
bursts. Your old tendency to perseverate is gone"
(Grandin & Scariano, 1986).
I had a odd lack of awareness of my oddities
of speech and mannerisms until I looked at videotapes.
I think videotapes could be used to help many
high-functioning autistics with speech and social
skills.
FAMILY HISTORY
There is much that can be learned from family
history. During my travels to autism conferences,
I have found many families with affective disorder
in the family history. The relationship between
autism and affective disorder has also been reported
in the literature (Gillberg & Schaumann, 1981).
Family histories of high-functioning autistics
often contain giftedness, anxiety or panic disorder,
depression, food allergies, and learning disorders.
In many of the families I have interviewed the
disorders were never formally diagnosed, but careful
questioning revealed them.
My own family history contains nervousness and
anxiety on both sides. My grandmother has mild
depression, and Tofranil has also worked wonders
for her. She is also very sensitive to loud noise.
She told me that when she was a little girl, the
sound of coal going down the chute was torture.
My sister is bothered by confusing noise from
several sources. On my father's side there is
explosive temper, perseveration on one topic,
extreme nervousness, and food allergies. Both
sides of my family contain artists. There are
also signs of immune system abnormalities in myself
and my siblings. I had shingles in my thirties,
and my brother had them at age 4. My sister had
serious ear infections similar to the ear infections
in many young autistics. My dad, brother , and
myself all have eczema.
SENSORY DEPRIVATION SYMPTOMS
Animals placed in an environment that severely
restricts sensory input develop many autistic
symptoms such as stereotyped behavior, hyperactivity,
and self-mutilation (Grandin, 1984). Why would
an autistic and a lion in a barren concrete zoo
cage have some of the same symptoms? From my own
experience I would like to suggest a possible
answer. Since incoming auditory and tactile stimulation
often overwhelmed me, I may have created a self-imposed
sensory restriction by withdrawing from input
that was too intense. Mother told me that when
I was a baby I stiffened and pulled away. By pulling
away, I did not receive the comforting tactile
input that is required for normal development.
Animal studies show that sensory restriction in
puppies and baby rats has a very detrimental effect
on brain development. Puppies raised in a barren
kennel become hyper-excitable, and their EEGs
(brain waves) still contain signs of overarousal
six months after removal from the kennel (Melzack
& Burns, 1965). Autistic children also have
a desynchronized EEG, which indicates high arousal
(Hutt, Hutt, Lee, & Ounstead, 1965). Trimming
the whiskers on baby rats causes the parts of
the brain that receive input from the whiskers
to become oversensitive (Simons & Land, 1987).
The abnormality is relatively permanent; the brain
areas are still abnormal after the whiskers grow
back. Some autistics also have overactive brain
metabolism (Rumsey et al., 1985).
I often wonder, if I had received more tactile
stimulation as a child would I have been less
"hyper" as an adult? Handling baby rats
produces less emotional adults who are more willing
to explore a maze (Denenbert, Morton, Kline, &
Grota, 1962; Ehrlich, 1959). Tactile stimulation
is extremely important for babies and aids their
development (Casler, 1965). Therapists have found
that children who withdraw from comforting tactile
stimulation can learn to enjoy it if their skin
is carefully desensitized. Rubbing the skin with
different cloth textures often helps. Deep pressure
stimulation also reduces the urge to pull away.
I was born with sensory problems (due to cerebellar
abnormalities), but perhaps secondary neurological
damage is caused by withdrawal from touching.
Autopsies of five autistic brains indicated that
cerebellar abnormalities occur during fetal development,
and many areas of the limbic systems were immature
and abnormal (Bauman, 1989). The limbic system
does not fully mature until two years after birth.
Maybe withdrawal from touching made some behavior
problems worse. In my book, I describe stupid
" bathroom" fixations that got me into
a lot of trouble. An interesting paper by McCray
(1978) shows a link between a lack of tactual
stimulation and excessive masturbation. Masturbation
stopped when the children received more affection
and hugging. Perhaps the "bathroom"
fixation would never have occurred if I could
have enjoyed affection and hugging.
Lately there has been a lot of publicity about
holding therapy, where an autistic child is forcibly
held and hugged until he stops resisting. If this
had been done to me I would have found it highly
aversive and stressful. Several parents of autistic
children have told me that a gentler form of holding
therapy is effective and it improved eye contact,
language, and sociability. Powers and Thorworth
(1985) report a similar result. Perhaps it would
be beneficial if autistic babies were gently stroked
when they pulled away. My reaction was like a
wild animal. At first touching was aversive, and
then it became pleasant. In my opinion, tactual
defensiveness should be broken down slowly, like
taming an animal. If a baby could be desensitized
and learn to enjoy comforting tactile input, possible
future behavior problems could be reduced.
DIRECT FIXATIONS
Today I have a successful career designing livestock
equipment because my high school science teacher,
Mr. Carlock, used my fixation on cattle chutes
to motivate me to study psychology and science.
He also taught me how to use the scientific indexes.
This knowledge enabled me to find out about Tofranil.
While the school psychologist wanted to take my
squeeze machine away, Mr. Carlock encouraged me
to read scientific journals so I could learn why
the machine had a relaxing effect. When I moved
out to Arizona to go to graduate school, I went
out to the feedlots to study the reactions of
the cattle in squeeze chutes. This was the beginning
of my career.
Today I travel all over the world designing stockyards
and chutes for major meat-packing firms. I am
a recognized leader in my field and have written
over 100 technical and scientific papers on livestock
handling (Grandin, 1987). If the psychologists
had been successful in taking away my squeeze
machine, maybe I would be sitting somewhere rotting
in front of a TV instead of writing this chapter.
Some of the most successful high-functioning
autistics have directed childhood fixations into
careers (Bemporad, 1979; Grandin & Scariano,
1968; Kanner, 1971). When Kanner (1971) followed
up his original 11 cases, there were two major
successes. The most successful person turned a
childhood fixation on numbers into a bank teller's
job. The farmer who reared him found goals for
his number fixation; he told him he could count
the corn rows if he plowed the field.
Many of my fixations initially had a sensory
basis. In the fourth grade, I was attracted to
election posters because I liked the feeling of
wearing the posters like a sandwich man. Occupational
therapists have found that a weighted vest will
often reduce hyperactivity.
Even though the poster fixation started out with
a sensory basis, I became interested in the election.
My teachers should have taken advantage of my
poster fixation to stimulate and interest in social
studies. Calculating electoral college points
would have motivated me to study math. Reading
could have been motivated by having me read newspaper
articles about the people on the posters. If a
child is interested in vacuum cleaners, then use
a vacuum-cleaner instruction book as a text.
Another one of my fixations was automatic glass
sliding doors. Initially I was attracted to the
doors because I liked the sensation of watching
them move back and forth. Then gradually the doors
took on other meanings, which I will talk about
in the next section. In a high-functioning adolescent,
and interest in sliding doors could be used to
stimulate science interests. if my teacher had
challenged me to learn how the electronic box
that opened the door worked, I would have dived
head first into electronics. Fixations can be
tremendous motivators. Teachers need to use fixations
to motivate instead of trying to stamp them out.
A narrow, fixated interest needs to be broadened
into constructive activities. The principle can
also be used with lower- functioning children;
Simons and Sabine (1987) list many good examples.
Fixations need to be differentiated from stereotypies,
such as hand flapping or rocking. A fixation is
an interest in something external, such as airplanes,
radio, or sliding doors. Engaging in stereotypic
behavior for long periods of time may be damaging
to the nervous system. In one experiment, pigs
in a barren pen that engaged in large amounts
of stereotyped rooting on each other had abnormal
dendritic growth in the somatosensory cortex (Grandin,
1989).
VISUALIZATION
All my thinking is visual. When I think about
abstract concepts such as getting along with people
I use visual images such as the sliding glass
door. Relationships must be approached carefully
otherwise the sliding door could be shattered.
Visualization to describe abstract concepts is
also described by Park and Youderian (1974). As
a young child I had visualizations to help me
understand the Lord's Prayer. The "power
and the glory" were high-tension electric
towers and a blazing rainbow sun. The word "trespass"
was visualized as a "No Trespassing"
sign on the neighbor's tree. Some parts of the
prayer were simply incomprehensible. The only
non-visual thoughts I have are of music. Today
I no longer use sliding doors to understand personal
relationships, but I still have to relate a particular
relationship with something I have read - for
example, the fight between Jane and Joe was like
the U.S. and Canada squabbling over the trade
agreement. Almost all my memories relate to visual
images of specific events. If somebody says the
word "cat," my images are of individual
cats I have known or read about. I do not think
about a generalized cat.
My career as a designer of livestock facilities
maximizes my talent areas and minimizes my deficits.
I still have problems handling long strings of
verbal information. If directions from a gas station
contain more than three steps, I have to write
them down. Statistics are extremely difficult
because I am unable to hold one piece of information
in my mind while I do the next step. Algebra is
almost impossible, because I can't make a visual
image and I mix up steps in the sequence. To learn
statistics I had to sit down with a tutor and
write down the directions for doing each test.
Every time I do a t-test or a chi-square, I have
to use the notes. I have no problem understanding
the principles of statistics, because I can see
the normal or skewed distributions in my head.
The problem is I cannot remember the sequence
for doing the calculations. I can put a regression
line on a graph full of dots visually. The first
time I tried it, I was off only a few degrees.
I also have many dyslexic traits, such as reversing
numbers and mixing up similar-sounding words such
as "over" and "other." Right
and left are also mixed up.
Visual thinking is an asset for an equipment
designer. I am able to "see" how all
parts of a project will fit together and see potential
problems. It never ceases to amaze me how architects
and engineers can make so many stupid mistakes
in buildings. The disastrous accident where the
catwalks at the Hyatt Regency fell and killed
100 people was caused by visualization errors.
All the calculations were correct, but the architect's
original design was impossible to build. Further
visualization errors made during construction
resulted in doubling the load on poorly designed
fasteners. Academic requirements probably keep
many visual thinkers out of these professions.
Designing a piece of equipment with a sequential
mind may be just as difficult for an engineer
as statistics equations are for me. The sequential
thinker can't see the whole. I have observed many
incidents in industry where a brilliant maintenance
man with a high school education designs a piece
of equipment after all the Ph.D. engineers have
failed. He may be an unrecognized visual thinker.
There may be two basic kinds of thinking, visual
and sequential. Farah (1989) concluded that "thinking
in images is distinct from thinking in language."
I have also had the opportunity to interview brilliant
people who have very little visual thought. One
professor told me that facts just come out of
his mind instantly. To retrieve facts, I have
to read them off a visualized page of a book or
"play a video" of some previous event.
There is however, one area of visualization I
am poor in. I often fail to recognize faces until
I have known a person for a long time. This sometimes
causes social problems, because I sometimes don't
respond to an acquaintance because I fail to recognize
them. Einstein was a visual thinker who failed
his high school language requirement and relied
on visual methods of study ((Holton, 1971-1972).
The theory of relativity was based on visual imagery
of moving boxcars and riding on light beams. At
an autism meeting I had the opportunity to visit
some of Einstein's relatives. His family history
has a high incidence of autism, dyslexia, food
allergies, giftedness, and musical talent. Einstein
himself had many autistic traits. An astute reader
can find them in Einstein and Einstein (1987)
and Lepscky (1982).
In my own family history, my grandfather on my
mother's side was co-inventor of the automatic
pilot for airplanes, and on my father's side my
great-grandfather was a maverick who started the
largest corporate wheat farm in the world. My
two sisters and one brother are all visual thinkers.
One sister is dyslexic and is brilliant in the
art of decorating houses. My brother can build
anything but had problems with calculus when he
tried to major in engineering. He is now a very
successful banker and did well in all other subjects
in college. My youngest sister is a sculptress
and did well in school. My mother and grandparents
on the mother's side were all good at higher math,
and many people on my mother's side were well-known
for intellect.
Drawing elaborate drawings of steel and concrete
livestock stockyards is easy (Figure 6-3). I am
able to visualize a motion picture of the finished
facility in my imagination. However, drawing realistic
human faces is very difficult. Figure 6-4 illustrates
a buffalo-handling facility I designed. Since
it was a government low-bid contract, every piece
of steel had to be visualized and drawn on 26
sheets of detailed drawings. I am very proud of
this job because I was able to accurately visualize
everything prior to construction except for one
little ladder. When I was a child, my parents
and teachers encouraged my artistic talent. It
is important to nurture talents.
Discussions with other high-functioning autistics
have revealed visual methods of thinking on tasks
that are often considered non-visual. A brilliant
autistic computer programmer told me that he visualized
the program tree in his mind and then just filled
in the code on each branch. A gifted autistic
composer told me that he made "sound pictures."
I was good at building things, but when I first
started working with drawings it took time to
learn how the lines on a drawing related to the
picture in my imagination. When I built a house
for my aunt and uncle, I had difficulty learning
the relationship between symbolic markings on
the drawings and the actual construction. The
house was built before I learned drafting. Now
I can instantly translate a drawing into a mental
image of a finished structure. While agonizing
over the house plans, I was able to pull up pictures
out of my memory of a house addition that was
built when I was eight. Mental images from my
childhood memory helped me install windows, light
switches, and plumbing. I replayed the "videos"
in my imagination.
SAVANT SKILLS
Studies have shown that when autistic savants
become less fixated and more social they lose
their savant skills such as card counting, calendar
calculation, or art skills (Rimland & Fein,
1988). Since I started taking the medication I
have lost my fixation, but I have not lost my
visualization skill. Some of my best work has
been done while on the medication.
My opinion is that savants lose their skill because
they lose the fixated attention. Card counting
(shown in the Rain Man movie) is no mystery to
me. I think savants visualize the cards being
dealt onto a table in a pattern, like a series
of clocks or a Persian rug pattern. To tell which
cards are still in the deck, they simply look
at their patterns. The only thing that prevents
me from card counting or calendar calculation
is that I no longer have the concentration to
hold a visual image completely steady for a long
period of time. I speculate that socialized savants
still retain their visualization skills. I still
have the perfect pitch skill, even though I don't
use it. If I had greater concentration, I could
sing back much longer songs after hearing them
once.
In my own case the strongest visual images are
of things that evoked strong emotions, such as
important big jobs. These memories never fade
and they remain accurate. However, I was unable
to recall visual images of the houses on a frequently
traveled road until I made an effort to attend
to them. A strong visual image contains all details,
and it can be rotated and made to move like a
movie. Weaker images are like slightly out-of-focus
pictures or may have details missing. For example,
in a meat-packing plant I can accurately visualize
the piece of equipment I designed but I am unable
to remember things I do not attend to, such as
the ceiling over the equipment, bathrooms, stairways,
offices, and other areas of little or not interest.
Memories of items of moderate interest grow hazy
with time.
I tried a little memory experiment at one of
my jobs. After being away from the plant for 30
days, I tried recalling a part of the plant that
I had attended to poorly, and another part I had
attended to intently. I had not designed either
of these places. The first place was the plant
conference room, and the other was the entrance
to the room that housed my equipment. I was able
to draw a fairly accurate map of the office, but
I made major mistakes on conference-room furniture
and ceiling covering. The room I visualized was
plain and lacked detail. On the other hand, I
visualized the entrance door to the equipment
room very accurately, but made a slight mistake
on the door-handle style. The visualized door
had much greater detail than the visualized conference
room. The conference room was not attended to
even though I negotiated with the plant managers
in that room.
Talents need to be nurtured and broadened out
into something useful. Nadia, a well-known autistic
case, drew wonderful perspective pictures as a
child (Seifel, 1977). When she gained rudimentary
social skills, she stopped drawing. Possibly the
talent could have been revived with encouragement
from teachers. Seifel (1977) describes how Nadia
drew pictures on napkins and waste papers. She
needed proper drawing equipment. Treffert (1989)
reported on several savants who did not lose their
savant skills when they became more social. Use
of savant skills was encouraged.
At the age of 28, my drafting drastically improved
after I observed a talented draftsman named David.
Building the house taught me how to understand
blueprints, but now I had to learn to draw them.
When I started drawing livestock facilities I
used David's drawings as models. I had to "pretend"
I was David. After buying a drafting pencil just
like David's, I laid some of his drawings out
and then proceeded to draw a loading ramp for
cattle. I just copied his style, like a savant
playing music, except my ramp was a different
design. When it was finished I couldn't believe
I had done it.
DEFICITS AND ABILITIES
Five years ago I took a series of tests to determine
my abilities and handicaps. On the Hiskey Nebraska
Spatial Reasoning test, my performance was at
the top of the norms. On the Woodcock-Johnson
Spatial Relations test, I only got an average
score because it was a timed speed test. I am
not a fast thinker; it takes time for the visual
image to form. When I survey a site for equipment
at a meat-packing plant, it takes 20 to 30 minutes
of staring at the building to fully imprint the
site in my memory. Once this is done, I have a
"video" I can play back when I am working
on the drawing. When I draw, the image of the
new piece of equipment gradually emerges. As my
experience increased, I needed fewer measurements
to properly survey a job. On many remodeling jobs,
the plant engineer often measures a whole bunch
of stuff that is going to be torn out. He can't
visualize what the building will look like when
parts of it are torn out and a new part is added.
As a child I got scores of 120 and 137 on the
Wechsler. I had superior scores in Memory for
Sentences, Picture Vocabulary, and Antonyms-Synonyms
on the Woodcock-Johnson. On Memory for Numbers
I beat the test by repeating the numbers out loud.
I have an extremely poor long-term memory for
things such as phone numbers unless I can convert
them to visual images. For example, the number
65 is retirement age, and I imagine somebody in
Sun City, Arizona. If I am unable to take notes
I cannot remember what people tell me unless I
translate the verbal information to visual pictures.
Recently I was listening to a taped medical lecture
while driving. To remember information such as
the drug doses discussed on the tape I had to
create a picture to stand for the dose. For example,
300mg is a football field with shoes on it. The
shoes remind me that the number is 300 feet, not
yards.
I got a second-grade score on the Woodcock-Johnson
Blending subtest where I had to identify slowly
sounded-out words. The Visual Auditory Learning
subtest was another disaster. I had to memorize
the meaning of arbitrary symbols, such as a triangle
means "horse," and read a sentence composed
of symbols. I could only learn the ones where
I was able to make a picture for each symbol.
For example, I imagined the triangle as a flag
carried by a horse and rider.
Foreign languages were almost impossible. Concept
Formation was another test with fourth-grade results.
The name of this test really irks me, because
I am good at forming concepts in the real world.
My ability to visualize broad unifying concepts
from hundreds of journal articles has enabled
me to outguess the "experts" on many
livestock subjects. The test involved picking
out a concept such as "large, yellow"
and then finding it in another set of cards. The
problem was, I could not hold the concept in my
mind while I looked at the other cards. If I had
been allowed to write the concept down, I would
have done much better.
LEARNING TO READ
Mother was my salvation for reading. I would have
never learned to read by the method that requires
memorization of hundreds of words. Words are too
abstract to be remembered. She taught me with
old-fashioned phonics. After I laboriously learned
all the sounds, I was able to sound out words.
To motivate me, she read a page and then stopped
in an exciting part. I had to read the next sentence.
Gradually she read less and less. Mrs. David W.
Eastham in Canada taught her autistic son to read
in a similar manner, using some Montessori methods.
Many teachers thought the boy was retarded. He
learned to communicate by typing, and he wrote
beautiful poetry. Douglas Biklen at Syracuse University
has taught some nonverbal autistic people to write
fluently on the typewriter. To prevent perseveration
on a single key and key targeting mistakes the
person's wrist is supported by another person.
A visualized-reading method developed by Miller
and Miller (1971) would also have been helpful.
To learn verbs, each word has letters drawn to
look like the action. For example, "fall"
would have letters falling over, and "run"
would have letters that looked like runners. This
method needs to be further developed for learning
speech sounds. Learning the sounds would have
been much easier if I had a picture of a choo-choo
train for "ch" and a cat for hard "c"
sound. For long and short vowels, long "a"
could be represented by a picture of somebody
praying. This card could be used for both "pr"
and long "a" by having a circle around
"pr" on one card and the "a"
on another.
At first, reading out loud was the only way I
could read. Today, when I read silently, I use
a combination of instant visualization and sounding
words. For example, this phrase from a magazine
- "stop several pedestrians on a city street"
- was instantly seen as moving pictures. Sentences
that contain more abstract words like "apparent"
or "incumbent" are sounded out phonetically.
As a child, I often talked out loud because it
made my thoughts more "concrete" and
"real." Today, when I am alone designing,
I will talk out loud about the design. Talking
activates more brain regions than just thinking.
MENTOR
"A skilled and imaginative teacher prepared
to enjoy and be challenged by the child seems
repeatedly to have been a deciding factor in the
success and educational placement of high-functioning,
autistic children" (Newson, Dawson, &
Everard, 1982). Bemporod (1979) also brings forth
the mentor concept. My mentor in high school was
Mr. Carlock, my high school science teacher. Structured
behavior modification methods that work with small
children are often useless with a high-functioning
older child with normal intelligence.
I was lucky to get headed on the right path after
college. Three other high-functioning autistics
were not so fortunate. One man has a Ph.D. in
math and he sits at home. He needed somebody to
steer him into an appropriate job. Teaching math
did not work out; he should have obtained a research
position that required less interaction with people.
The other lady has a degree in history and now
works doing a boring telephone-sales job. She
needs a job where she can fully utilize her talents.
she al so needs a mentor to help her find an appropriate
job and help open doors for her. Both these people
needed support after college, and they did not
receive it. The third man did well in high school
and he also sits at home. He has a real knack
for library research. If some interested person
worked with him, he could work for a newspaper
researching background information for stories.
All three of these people need jobs where they
can make maximum use of their talents and minimize
their deficits.
Another autistic lady I know was lucky. She landed
a graphic-arts job where she was able to put her
visualization talents to good use. Her morale
was also boosted when her paintings received recognition
and were purchased by a local bank. Her success
with the paintings also opened up many social
doors. In my own case, many social doors opened
after I made scenery for the college talent show.
I was still considered a nerd, but now I was a
"neat" nerd. People respect talent even
if they think you are "weird." People
became interested in me after they saw my drawings
and pictures of my jobs. I made myself an expert
in a specialized area.
High-functioning autistics will probably never
really fit in with the social whirl. My life is
my work. If a high- functioning autistic gets
an interesting job, he or she will have a fulfilling
life. I spend most Friday and Saturday nights
writing papers and drawing. Almost all my social
contacts are with livestock people or people interested
in autism. Like the Newson et al. (1982) subjects,
I prefer factual, non-fictional reading materials.
I have little interest in novels with complicated
interpersonal relationships. When I do read novels,
I prefer straightforward stories that occur in
interesting places with lots of description.
The mentor needs to be somebody who can provide
support on several different fronts. Employment
is only one area. Many high-functioning autistics
need to learn about budgeting money, how to make
claims on health insurance, and nutritional counseling.
As the person becomes more and more independent
the mentor can be phased out, but the mentor may
still be needed if the autistic loses his job
or has some other crisis.
WHO HELPED ME RECOVER
Many people ask me, "How did you manage to
recover?" I was extremely lucky to have the
right people working with me at the right time.
At age 2, I had all the typical autistic symptoms.
In 1949, most doctors did not know what autism
was, but fortunately a wise neurologist recommended
"normal therapy" instead of an institution.
I was referred to a speech therapist who ran a
special nursery school in her home. The speech
therapist was the most important professional
in my life. At age 3, my mother hired a governess
who kept me and my sister constantly occupied.
My day consisted of structured activities such
as skating, swinging, and painting. The activities
were structured, but I was given limited opportunities
for choice. For example, on one day I could choose
between building a snowman or sledding. She actually
participated in all the activities. She also conducted
musical activities, and we marched around the
piano with toy drums. My sensory problems were
not handled well. I would have really benefited
if I had had an occupational therapist trained
in sensory integration.
I went to a normal elementary school with older,
experienced teachers and small classes. Mother
was another important person who helped my recovery.
She worked very closely with the school. She used
techniques that are used today in the most successful
mainstreaming programs to integrate me into the
classroom. The day before I went to school, she
and the teacher explained to the other children
that they needed to help me.
As discussed earlier, puberty was a real problem
time. I got kicked out of high school for fighting.
I then moved on to a small country boarding school
for gifted children with emotional problems. The
director was an innovative man and considered
a "lone wolf" by his psychologist colleagues.
This is where I met Mr. Carlock. Another extremely
helpful person was Ann, my aunt. I visited her
ranch during the summer.
In high school and college, the people that helped
me the most were the creative, unconventional
thinkers. The more traditional professionals such
as the school psychologist were actually harmful.
They were too busy trying to psychoanalyze me
and take away my squeeze machine. Later when I
became interested in meat-packing plants, Tom
Rohrer, the manager of the local meat-packing
plant, took an interest in me. For three years
I visited his plant once a week and learned the
industry. My very first design job was in his
plant. I want to emphasize the importance of a
gradual transition from the world of school to
the world of work. The packing plant visits were
made while I was still in college. People with
autism need to be gradually introduced to a job
before they graduate. The autistics I discussed
earlier could have excellent careers if they had
a local businessperson take an interest in them.
AUTISM PROGRAMS
During my travels I have observed many different
programs. It is my opinion that effective programs
for young children have certain common denominators
that are similar regardless of theoretical basis.
Early, intense intervention improves the prognosis.
Passive approaches don't work. My governess was
sometimes mean, but her intense, structured intervention
prevented me from withdrawing. She and my mother
just used their good instincts. Good programs
do a variety of activities and use more than one
approach. A good little children's program should
include flexible behavior modification, speech
therapy, exercise, sensory treatment (activities
that stimulate the vestibular system and tactile
desensitization), musical activities, contact
with nor mal children, and lots of love. The effectiveness
of different types of programs is going to vary
from case to case. A program that is effective
for one case may be less effective for another.
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Reprinted with permission from www.autism.org
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