Isolated in worlds of their own, people with autism appear indifferent
and remote and are unable to form emotional bonds with others. Although
people with this baffling brain disorder can display a wide range of
symptoms and disability, many are incapable of understanding other
people's thoughts, feelings, and needs. Often, language and intelligence
fail to develop fully, making communication and social relationships
difficult. Many people with autism engage in repetitive activities, like
rocking or banging their heads, or rigidly following familiar patterns in
their everyday routines. Some are painfully sensitive to sound, touch,
sight, or smell.
Children with autism do not follow the typical patterns of child
development. In some children, hints of future problems may be apparent
from birth. In most cases, the problems become more noticeable as the
child slips farther behind other children the same age. Other children
start off well enough. But between 18 and 36 months old, they suddenly
reject people, act strangely, and lose language and social skills they had
As a parent, teacher, or caregiver you may know the frustration of
trying to communicate and connect with children or adults who have autism.
You may feel ignored as they engage in endlessly repetitive behaviors. You
may despair at the bizarre ways they express their inner needs. And you
may feel sorrow that your hopes and dreams for them may never materialize.
But there is help-and hope. Gone are the days when people with autism
were isolated, typically sent away to institutions. Today, many youngsters
can be helped to attend school with other children. Methods are available
to help improve their social, language, and academic skills. Even though
more than 60 percent of adults with autism continue to need care
throughout their lives, some programs are beginning to demonstrate that
with appropriate support, many people with autism can be trained to do
meaningful work and participate in the life of the community.
Autism is found in every country and region of the world, and in
families of all racial, ethnic, religious, and economic backgrounds.
Emerging in childhood, it affects about 1 or 2 people in every thousand
and is three to four times more common in boys than girls. Girls with the
disorder, however, tend to have more severe symptoms and lower
intelligence. In addition to loss of personal potential, the cost of
health and educational services to those affected exceeds $3 billion each
year. So, at some level, autism affects us all.
The individuals referred to in this brochure are not real, but their
stories are based on interviews with parents who have children with
Paul Paul has always
been obsessed with order. As a child, he lined up blocks, straightened
chairs, kept his toothbrush in the exact same spot on the sink, and threw
a tantrum when anything was moved. Paul could also become aggressive.
Sometimes, when upset or anxious, he would suddenly explode, throwing a
nearby object or smashing a window. When overwhelmed by noise and
confusion, he bit himself or picked at his nails until they bled. At
school, where his schedule and environment could be carefully structured,
his behavior was more normal. But at home, amid the unpredictable, noisy
hubbub of a large family, he was often out of control. His behavior made
it harder and harder for his parents to care for him at home and also meet
their other children's needs. At that time-more than 10 years ago-much
less was known about the disorder and few therapeutic options were
available. So, at age 9, his parents placed him in a residential program
where he could receive 24-hour supervision and care.
Alan As an infant, Alan was
playful and affectionate. At 6 months old, he could sit up and crawl. He
began to walk and say words at 10 months and could count by 13 months. One
day, in his 18th month, his mother found him sitting alone in the kitchen,
repeatedly spinning the wheels of her vacuum cleaner with such persistence
and concentration, he didn't respond when she called. From that day on,
she recalls, "It was as if someone had pulled a shade over him." He
stopped talking and relating to others. He often tore around the house
like a demon. He became fixated on electric lights, running around the
house turning them on and off. When made to stop, he threw a tantrum,
kicking and biting anyone within reach.
Janie From the day she
was born, Janie seemed different from other infants. At an age when most
infants enjoy interacting with people and exploring their environment,
Janie sat motionless in her crib and didn't respond to rattles or other
toys. She didn't seem to develop in the normal sequence, either. She stood
up before she crawled, and when she began to walk, it was on her toes. By
30 months old, she still wasn't talking. Instead, she grabbed things or
screamed to get what she wanted. She also seemed to have immense powers of
concentration, sitting for hours looking at a toy in her hand. When Janie
was brought to a special clinic for evaluation, she spent an entire
testing session pulling tufts of wool from the psychologist's sweater.
Autism is a brain disorder that typically affects a person's ability to
communicate, form relationships with others, and respond appropriately to
the environment. Some people with autism are relatively high-functioning,
with speech and intelligence intact. Others are mentally retarded, mute,
or have serious language delays. For some, autism makes them seem closed
off and shut down; others seem locked into repetitive behaviors and rigid
patterns of thinking.
Although people with autism do not have exactly the same symptoms and
deficits, they tend to share certain social, communication, motor, and
sensory problems that affect their behavior in predictable ways.
|Difference in the
Behaviors of Infants With and Without Autism
- Avoid eye contact
- Seem deaf
- Start developing language, then abruptly stop talking
- Study mother's face
- Easily stimulated by sounds
- Keep adding to vocabulary and expanding grammatical usage
- Act as if unaware of the coming and going of others
- Physically attack and injure others without provocation
- Inaccessible, as if in a shell
- Cry when mother leaves the room and are anxious with strangers
- Get upset when hungry or frustrated
- Recognize familiar faces and smile
- Remain fixated on a single item or activity
- Practice strange actions like rocking or hand-flapping
- Sniff or lick toys
- Show no sensitivity to burns or bruises, and engage in
self-mutilation, such as eye gouging
- Move from one engrossing object or activity to another
- Use body purposefully to reach or acquire objects
- Explore and play with toys
- Seek pleasure and avoid pain
NOTE: This list is not intended to be used to assess
whether a particular person has child autism. Diagnosis should only be done
by a specialist using highly detailed background information and
From the start, most infants are social beings. Early in life, they
gaze at people, turn toward voices, endearingly grasp a finger, and even
In contrast, most children with autism seem to have tremendous
difficulty learning to engage in the give-and-take of everyday human
interaction. Even in the first few months of life, many do not interact
and they avoid eye contact. They seem to prefer being alone. They may
resist attention and affection or passively accept hugs and cuddling.
Later, they seldom seek comfort or respond to anger or affection. Unlike
other children, they rarely become upset when the parent leaves or show
pleasure when the parent returns. Parents who
looked forward to the joys of cuddling, teaching, and playing with their
child may feel crushed by this lack of response.
Children with autism also take longer to learn to interpret what others
are thinking and feeling. Subtle social cues-whether a smile, a wink, or a
grimace-may have little meaning. To a child who misses these cues, "Come
here," always means the same thing, whether the speaker is smiling and
extending her arms for a hug or squinting and planting her fists on her
hips. Without the ability to interpret gestures and facial expressions,
the social world may seem bewildering.
To compound the problem, people with autism have problems seeing things
from another person's perspective. Most 5-year-olds understand that other
people have different information, feelings, and goals than they have. A
person with autism may lack such understanding. This inability leaves them
unable to predict or understand other people's actions.
Some people with autism also tend to be physically aggressive at times,
making social relationships still more difficult. Some lose control,
particularly when they're in a strange or overwhelming environment, or
when angry and frustrated. They are capable at times of breaking things,
attacking others, or harming themselves. Alan, for example, may fall into
a rage, biting and kicking when he is frustrated or angry. Paul, when
tense or overwhelmed, may break a window or throw things. Others are
self-destructive, banging their heads, pulling their hair, or biting their
By age 3, most children have passed several predictable milestones on
the path to learning language. One of the earliest is babbling. By the
first birthday, a typical toddler says words, turns when he hears his
name, points when he wants a toy, and when offered something distasteful,
makes it very clear that his answer is no. By age 2, most children begin
to put together sentences like "See doggie," or "More cookie," and can
follow simple directions.
Research shows that about half of the children diagnosed with autism
remain mute throughout their lives. Some infants who later show signs of
autism do coo and babble during the first 6 months of life. But they soon
stop. Although they may learn to communicate using sign language or
special electronic equipment, they may never speak. Others may be delayed,
developing language as late as age 5 to 8.
Those who do speak often use language in unusual ways. Some seem unable
to combine words into meaningful sentences. Some speak only single words.
Others repeat the same phrase no matter what the situation.
Some children with autism are only able to parrot what they hear, a
condition called echolalia. Without persistent training, echoing
other people's phrases may be the only language that people with autism
ever acquire. What they repeat might be a question they were just asked,
or an advertisement on television. Or out of the blue, a child may shout,
"Stay on your own side of the road!"-something he heard his father say
weeks before. Although children without autism go through a stage where
they repeat what they hear, it normally passes by the time they are 3.
People with autism also tend to confuse pronouns. They fail to grasp
that words like "my," "I," and "you," change meaning depending on who is
speaking. When Alan's teacher asks, "What is my name?" he answers, "My
name is Alan."
Some children say the same phrase in a variety of different situations.
One child, for example, says "Get in the car," at random times throughout
the day. While on the surface, her statement seems bizarre, there may be a
meaningful pattern in what the child says. The child may be saying, "Get
in the car," whenever she wants to go outdoors. In her own mind, she's
associated "Get in the car," with leaving the house. Another child, who
says "Milk and cookies" whenever he is pleased, may be associating his
good feelings around this treat with other things that give him pleasure.
It can be equally difficult to understand the body language of a person
with autism. Most of us smile when we talk about things we enjoy, or shrug
when we can't answer a question. But for children with autism, facial
expressions, movements, and gestures rarely match what they are saying.
Their tone of voice also fails to reflect their feelings. A high-pitched,
sing-song, or flat, robot-like voice is common.
Without meaningful gestures or the language to ask for
things, people with autism are at a loss to let others know what they
need. As a result, children with autism may simply scream or grab what
they want. Temple Grandin, an exceptional woman with autism who has
written two books about her disorder, admits, "Not being able to speak was
utter frustration. Screaming was the only way I could communicate." Often
she would logically think to herself, "I am going to scream now because I
want to tell somebody I don't want to do something." Until they are taught
better means of expressing their needs, people with autism do whatever
they can to get through to others.
The Story of Temple Grandin
Temple Grandin, despite a lifelong struggle with autism, earned a
doctoral degree in animal science. Today, she invents equipment for
managing livestock and teaches at a major university. A woman of
extraordinary accomplishments, she has also written several books on
animal science, autism, and her own life.
Yet at 6 months old, Temple had many of the full-blown signs of
autism. When held, she would stiffen and struggle to be put down. By
age 2, it was clear that she was hypersensitive to taste, sound,
smell, and touch. Sounds were excruciating. Wearing clothes was
torture: the feel of certain fabrics was like sandpaper grating her
skin. Constantly buffeted by overpowering sensations, she screamed,
raged, and threw things. At other times, she found that by focusing
intently and exclusively on one item-her own hand, an apple, a
spinning coin, or sand sifting through her fingers-she could
withdraw into a temporary haven of order and predictability.
As was customary at the time, a doctor advised that Temple be
institutionalized. Her mother refused and placed her in a
therapeutic program for children who were speech impaired. The
classes were small and highly structured. Even though the program
was not designed to treat autism, the methods worked for Temple. By
age 4, she began to speak and by age 5 she was able to attend
kindergarten in a regular school. Temple attributes her success to
several key people in her life: her mother, who persisted in finding
help; her therapist, who kept her from withdrawing into an inner
world; and a high school teacher who helped transform her interest
in animals into a career in animal science.
Temple's insights into the needs of animals, a strongly developed
ability to think visually "in pictures," and an awareness of her own
special needs led her to invent equipment that has helped both
livestock and, remarkably, herself. After seeing a device used to
calm cattle, she created a "squeeze machine." The machine provides
self- controlled pressure that helps her relax. She finds that after
using the squeeze machine, she feels less aggressive and less
hypersensitive. With her love of animals and her personal
sensitivity as a guide, Temple has also designed humane equipment
and facilities for managing cattle that are used all over the world.
Her unusually strong visual sense allows her to plan and design
these complex projects in her head. She can precisely envision new,
complex facilities and how various pieces of equipment fit together
before she draws a blueprint.
Temple Grandin's story is a powerful affirmation that autism need
not keep people from realizing their potential.
Repetitive behaviors and obsessions
Although children with autism usually appear physically normal and have
good muscle control, odd repetitive motions may set them off from other
children. A child might spend hours repeatedly flicking or flapping her
fingers or rocking back and forth. Many flail their arms or walk on their
toes. Some suddenly freeze in position. Experts call such behaviors
stereotypies or self-stimulation.
Some people with autism also tend to repeat certain actions over and
over. A child might spend hours lining up pretzel sticks. Or, like Alan,
run from room to room turning lights on and off.
Some children with autism develop troublesome fixations with specific
objects, which can lead to unhealthy or dangerous behaviors. For example,
one child insists on carrying feces from the bathroom into her classroom.
are simply startling, humorous, or embarrassing to those around them. One
girl, obsessed with digital watches, grabs the arms of strangers to look
at their wrists.
For unexplained reasons, people with autism demand consistency in their
environment. Many insist on eating the same foods, at the same time,
sitting at precisely the same place at the table every day. They may get
furious if a picture is tilted on the wall, or wildly upset if their
toothbrush has been moved even slightly. A minor change in their routine,
like taking a different route to school, may be tremendously upsetting.
Scientists are exploring several possible explanations for such
repetitive, obsessive behavior. Perhaps the order and sameness lends some
stability in a world of sensory confusion. Perhaps focused behaviors help
them to block out painful stimuli. Yet another theory is that these
behaviors are linked to the senses that work well or poorly. A child who
sniffs everything in sight may be using a stable sense of smell to explore
his environment. Or perhaps the reverse is true: he may be trying to
stimulate a sense that is dim.
Imaginative play, too, is limited by these repetitive behaviors and
obsessions. Most children, as early as age 2, use their imagination to
pretend. They create new uses for an object, perhaps using a bowl for a
hat. Or they pretend to be someone else, like a mother cooking dinner for
her "family" of dolls. In contrast, children with autism rarely pretend.
Rather than rocking a doll or rolling a toy car, they may simply hold it,
smell it, or spin it for hours on end.
When children's perceptions are accurate, they can learn from what they
see, feel, or hear. On the other hand, if sensory information is faulty or
if the input from the various senses fails to merge into a coherent
picture, the child's experiences of the world can be confusing. People
with autism seem to have one or both of these problems. There may be
problems in the sensory signals that reach the brain or in the integration
of the sensory signals-and quite possibly, both.
Apparently, as a result of a brain malfunction, many children with
autism are highly attuned or even painfully sensitive to certain sounds,
textures, tastes, and smells. Some children find the feel of clothes
touching their skin so disturbing that they can't focus on anything else.
For others, a gentle hug may be overwhelming. Some children cover their
ears and scream at the sound of a vacuum cleaner, a distant airplane, a
telephone ring, or even the wind. Temple Grandin says, "It was like having
a hearing aid that picks up
everything, with the volume control stuck on super loud." Because any
noise was so painful, she often chose to withdraw and tuned out sounds to
the point of seeming deaf.
In autism, the brain also seems unable to balance the senses
appropriately. Some children with autism seem oblivious to extreme cold or
pain, but react hysterically to things that wouldn't bother other
children. A child with autism may break her arm in a fall and never cry.
Another child might bash his head on the wall without a wince. On the
other hand, a light touch may make the child scream with alarm.
In some people, the senses are even scrambled. One child gags when she
feels a certain texture. A man with autism hears a sound when someone
touches a point on his chin. Another experiences certain sounds as colors.
Some people with autism display remarkable abilities. A few demonstrate
skills far out of the ordinary. At a young age, when other children are
drawing straight lines and scribbling, some children with autism are able
to draw detailed, realistic pictures in three-dimensional perspective.
Some toddlers who are autistic are so visually skilled that they can put
complex jigsaw puzzles together. Many begin to read exceptionally
early-sometimes even before they begin to speak. Some who have a keenly
developed sense of hearing can play musical instruments they have never
been taught, play a song accurately after hearing it once, or name any
note they hear. Like the person played by Dustin Hoffman in the movie
Rain Man, some people with autism can memorize entire television
shows, pages of the phone book, or the scores of every major league
baseball game for the past 20 years. However, such skills, known as
islets of intelligence or savant skills are rare.
Parents are usually the first to notice unusual behaviors in their
child. In many cases, their baby seemed "different" from birth-being
unresponsive to people and toys, or focusing intently on one item for long
periods of time. The first signs of autism may also appear in children who
had been developing normally. When an affectionate, babbling toddler
suddenly becomes silent, withdrawn, violent, or self-abusive, something is
Even so, years may go by before the family seeks a diagnosis.
Well-meaning friends and relatives sometimes help parents ignore the
problems with reassurances that "Every child is different," or "Janie can
talk-she just doesn't want to!" Unfortunately, this only delays
getting appropriate assessment and treatment for the child.
Indicators of Normal Development
||Skills or Abilities
Awareness and Thinking
|Responds to new sounds
Looks at object and people
|Coos and makes sounds
Smiles at mother's
|Waves hands and feet
Watches movement of
|Enjoys being tickled and
Makes brief eye contact
|Opens mouth to bottle or|
|Turns head to sounds and
|Lifts head and chest
Bangs objects in
|Notices strangers and
Likes physical play
|Eats baby food from spoon|
Reaches for and
||Imitates simple gestures
|Makes nonsense syllables
Uses voice to get attention
Stands by holding on to
Moves objects from one
Understands social signals like
Drink from a cup with
||Plays simple games
Moves to reach desired
Looks at pictures in books
Stops when told
Imitates new words
|Walks holding on to
Deliberately lets go of an object
Makes markes with
a pencil or
|Laughs aloud during play
for one toy
Responds to adult's change
|Feeds self with fingers|
||Imitates unfamiiar sounds
Points to a desired object
|Shakes head to mean "no"
Follows simple commands
|Creeps upstairs and downstairs
|Repeats a performance
Shows emotions like fear or
Returns a kiss
|Moves to help in dressing|
||Identifies parts of own body
Points to pictures in books
|Uses two words to describe
Refers to self by name
|Jumps in place
Pushes and pulls
Turns pages of book one
|Cries a bit when parents leave
Pays attention to other
Removes clothes without
||Matches shapes and objects
Recognizes self in mirror
Counts to ten
|Joins in songs and rhythm
Uses simple pronouns
|Kicks and throws ball
Draws straight lines
|Pretends and plays make
Avoids dangerous situations
to take turns
|Feeds self with spoon|
Uses toilet with
|Adapted from "Growth and Development Milestones,"
Maryland Infants and Toddlers|
Program, Baltimore, MD,
To date, there are no medical tests like x-rays or blood tests that
detect autism. And no two children with the disorder behave the same way.
In addition, several conditions can cause symptoms that resemble
autism symptoms. So parents and the child's pediatrician need to rule out other
disorders, including hearing loss, speech problems, mental retardation,
and neurological problems. But once these possibilities have been
eliminated, a visit to a professional who specializes in autism is
necessary. Such specialists include people with the professional titles of
child psychiatrist, child psychologist, developmental pediatrician, or
Child Autism specialists use a variety of methods to identify the disorder.
Using a standardized rating scale, the specialist closely observes and
evaluates the child's language and social behavior. A structured interview
is also used to elicit information from parents about the child's behavior
and early development. Reviewing family videotapes, photos, and baby
albums may help parents recall when each behavior first occurred and when
the child reached certain developmental milestones. The specialists may
also test for certain genetic and neurological problems.
Specialists may also consider other conditions that produce many of the
same behaviors and symptoms as autism, such as Rett's Disorder or
Asperger's Disorder. Rett's Disorder is a progressive brain disease that
only affects girls but, like autism, produces repetitive hand movements
and leads to loss of language and social skills. Children with Asperger's
Disorder are very like high-functioning children with autism. Although
they have repetitive behaviors, severe social problems, and clumsy
movements, their language and intelligence are usually intact. Unlike
autism, the symptoms of Asperger's Disorder typically appear later in
After assessing observations and test results, the specialist makes a
diagnosis of autism only if there is clear evidence of:
- poor or limited social relationships
- underdeveloped communication skills
- repetitive behaviors, interests, and activities.
People with autism generally have some impairment within each category,
although the severity of each symptom may vary. The diagnostic criteria
also require that these symptoms appear by age 3.
However, some specialists are reluctant to give a diagnosis of autism.
They fear that it will cause parents to lose hope. As a result, they may
apply a more general term that simply describes the child's behaviors or
sensory deficits. "Severe communication disorder with autism-like
behaviors," "multi-sensory system disorder," and "sensory integration
dysfunction" are some of the terms that are used. Children with milder or
fewer symptoms are often diagnosed as having Pervasive Developmental
Although terms like Asperger's Disorder and PDD do not significantly
change treatment options, they may keep the child from receiving the full
range of specialized educational services available to children diagnosed
with autism. They may also give parents false hope that their child's
problems are only temporary.
It is generally accepted that autism is caused by abnormalities in
brain structures or functions. Using a variety of new research tools to
study human and animal brain growth, scientists are discovering more about
normal development and how abnormalities occur.
The brain of a fetus develops throughout pregnancy. Starting out with a
few cells, the cells grow and divide until the brain contains billions of
specialized cells, called neurons. Research sponsored by NIMH and other
components at the National Institutes of Health is playing a key role in
showing how cells find their way to a specific area of the brain and take
on special functions. Once in place, each neuron sends out long fibers
that connect with other neurons. In this way, lines of communication are
established between various areas of the brain and between the brain and
the rest of the body. As each neuron receives a signal it releases
chemicals called neurotransmitters, which pass the signal to the next
neuron. By birth, the brain has evolved into a complex organ with several
distinct regions and subregions, each with a precise set of functions and
|Different parts of the brain have different functions
- The hippocampus makes it possible to recall recent experience
and new information
- The amygdala directs our emotional responses
- The frontal lobes of the cerebrum allow us to solve problems,
plan ahead, understand the behavior of others, and restrain our
- The parietal areas control hearing, speech, and language
- The cerebellum regulates balance, body movements,
coordination, and the muscles used in speaking
- The corpus callossum passes information from one side of the
brain to the other
But brain development does not stop at birth. The brain continues to
change during the first few years of life, as new neurotransmitters become
activated and additional lines of communication are established. Neural
networks are forming and creating a foundation for processing language,
emotions, and thought.
However, scientists now know that a number of problems may interfere
with normal brain development. Cells may migrate to the wrong place in the
brain. Or, due to problems with the neural pathways or the
neurotransmitters, some parts of the communication network may fail to
perform. A problem with the communication network may interfere with the
overall task of coordinating sensory information, thoughts, feelings, and
Researchers supported by NIMH and other NIH Institutes are scrutinizing
the structures and functions of the brain for clues as to how a brain with
autism differs from the normal brain. In one line of study, researchers
are investigating potential defects that occur during initial brain
development. Other researchers are looking for defects in the brains of
people already known to have autism.
Scientists are also looking for abnormalities in the brain structures
that make up the limbic system. Inside the limbic system, an area called
the amygdala is known to help regulate aspects of social and emotional
behavior. One study of high-functioning children with autism found that
the amygdala was indeed impaired but that another area of the brain, the
hippocampus, was not. In another study, scientists followed the
development of monkeys whose amygdala was disrupted at birth. Like
children with autism, as the monkeys grew, they became increasingly
withdrawn and avoided social contact.
Differences in neurotransmitters, the chemical messengers of the
nervous system, are also being explored. For example, high levels of the
neurotransmitter serotonin have been found in a number of people with
autism. Since neurotransmitters are responsible for passing nerve impulses
in the brain and nervous systme, it is possible that they are involved in
the distortion of sensations that accompanies autism.
NIMH grantees are also exploring differences in overall brain function,
using a technology called magnetic resonance imaging (MRI) to identify
which parts of the brain are energized during specific mental tasks. In a
study of adolescent boys, NIMH researchers observed that during
problem-solving and language tasks, teenagers with autism were not only
less successful than peers without autism, but the MRI images of their
brains showed less activity. In a study of younger children, researcers
observed low levels of activity in the parietal areas and the corpus
callosum. Such research may help scientists determine whether autism
reflects a problem with specific areas of the brain or with the
transmission of signals from one part of the brain to another.
Each of these differences has been seen in some but not all the people
with autism who were tested. What could this mean? Perhaps the term autism
actually covers several different disorders, each caused by a different
problem in the brain. Or perhaps the various brain differences are
themselves caused by a single underlying disorder that scientists have not
yet identified. Discovering the physical basis of autism should someday
allow us to better identify, treat, and possibly prevent it.
Factors affecting brain development
But what causes normal brain development to go awry? Some NIMH
researchers are investigating genetic causes-the role that heredity and
genes play in passing the disorder from one generation to the next. Others
are looking at medical problems related to pregnancy and other factors.
Heredity. Several studies of twins suggest that autism- or at
least a higher likelihood of some brain dysfunction-can be inherited. For
example, identical twins are far more likely than fraternal twins to both
have autism. Unlike fraternal twins, which develop from two separate eggs,
identical twins develop from a single egg and have the same genetic
It appears that parents who have one child with autism are at slightly
increased risk for having more than one child with autism. This also
suggests a genetic link. However, autism does not appear to be due to one
particular gene. If autism, like eye color, were passed along by a single
gene, more family members would inherit the disorder. NIMH grantees, using
state-of-the-art gene splicing techniques, are searching for irregular
segments of genetic code that the autistic members of a family may have
Some scientists believe that what is inherited is an irregular segment
of genetic code or a small cluster of three to six unstable genes. In most
people, the faulty code may cause only minor problems. But under certain
conditions, the unstable genes may interact and seriously interfere with
the brain development of the unborn child.
A body of NIMH-sponsored research is testing this theory. One study is
exploring whether parents and siblings who do not have autism show minor
autism symptoms, such as mild social, language, or reading problems. If so, such
findings would suggest that several members of a family can inherit the
irregular or unstable genes, but that other as yet unidentified conditions
must be present for the full-blown disorder to develop.
Pregnancy and other problems. Throughout pregnancy, the fetal
brain is growing larger and more complex, as new cells, specialized
regions, and communication networks form. During this time, anything that
disrupts normal brain development may have lifelong effects on the child's
sensory, language, social, and mental functioning.
For this reason, researchers are exploring whether certain conditions,
like the mother's health during pregnancy, problems during delivery, or
other environmental factors may interfere with normal brain development.
Viral infections like rubella (also called German measles), particularly
in the first three months of pregnancy, may lead to a variety of problems,
possibly including autism and retardation. Lack of oxygen to the baby and
other complications of delivery may also increase the risk of autism.
However, there is no clear link. Such problems occur in the delivery of
many infants who are not autistic, and most children with autism are born
without such factors.
Several disorders commonly accompany autism. To some extent, these may
be caused by a common underlying problem in brain functioning.
Of the problems that can occur with autism, mental retardation is the
most widespread. Seventy-five to 80 percent of people with autism are
mentally retarded to some extent. Fifteen to 20 percent are considered
severely retarded, with IQs below 35. (A score of 100 represents average
intelligence.) But autism does not necessarily correspond with mental
impairment. More than 10 percent of people with autism have an average or
above average IQ. A few show exceptional intelligence.
Interpreting IQ scores is difficult, however, because most intelligence
tests are not designed for people with autism. People with autism do not
perceive or relate to their environment in typical ways. When tested, some
areas of ability are normal or even above average, and some areas may be
especially weak. For example, a child with autism may do extremely well on
the parts of the test that measure visual skills but earn low scores on
the language subtests.
About one-third of the children with autism develop seizures, starting
either in early childhood or adolescence. Researchers are trying to learn
if there is any significance to the time of onset, since the seizures
often first appear when certain neurotransmitters become active.
Since seizures range from brief blackouts to full-blown body
convulsions, an electroencephalogram (EEG) can help confirm their
presence. Fortunately, in most cases, seizures can be controlled with
One disorder, Fragile X syndrome, has been found in about 10 percent of
people with autism, mostly males. This inherited disorder is named for a
defective piece of the X-chromosome that appears pinched and fragile when
seen under a microscope.
People who inherit this faulty bit of genetic code are more likely to
have mental retardation and many of autism symptoms along with
unusual physical features that are not typical of autism.
There is also some relationship between autism and Tuberous Sclerosis,
a genetic condition that causes abnormal tissue growth in the brain and
problems in other organs. Although Tuberous Sclerosis is a rare disorder,
occurring less than once in 10,000 births, about a fourth of those
affected are also autistic.
Scientists are exploring genetic conditions such as Fragile X and
Tuberous Sclerosis to see why they so often coincide with autism.
Understanding exactly how these conditions disrupt normal brain
development may provide insights to the biological and genetic mechanisms
a good time for Paul. He seemed to relax and become more social. He became
more affectionate. When approached, he would converse with people. For
several months, drugs were used to help him control his aggression, but
they were stopped because they caused unwanted side effects. Even so, he
now rarely throws or breaks things.
Two years ago, Paul's parents were able to take advantage of new
scientific understanding about autism, and they enrolled him in an
innovative program that provides full-time support, enabling him to live
and work within the community. Today, at age 20, he has a closely
supervised job assembling booklets for a publishing company. He lives in
an attractive apartment with another man who has autism and a residence
supervisor. Paul loves picnics and outings to the library to check out
books and cassettes. He also enjoys going home each week to visit his
family. But he still demands familiarity and order. As soon as he arrives
home, he moves every piece of furniture back to the location that is
familiar to him.
The summer Alan was 6,
after years with no apparent progress, his language began to flow.
Although he reversed the meaning of pronouns, he began talking in
sentences that other people could understand.
Now age 13, Alan has lost his constant obsession with lights, returning
to it only when he feels stressed. He often burrows under a heavy pile of
pillows, which seems to relax and comfort him. His fits of anger occur
less often, but because he is bigger, he reacts with more force. Every now
and then, he goes out of control, kicking, hitting, and biting. Once, at a
shopping mall, he threw a tantrum so severe that his mother had to hold
him down to control him.
At the same time, he has successfully made the transition to middle
school and he is learning more quickly than before. He seems more aware of
his surroundings and remembers people. He still doesn't play with other
children, but often sits watching them from a window. It's as if he has
become aware that he is different. He also seems more aware of his own
emotions and at times he says quietly, "You sad."
Today, at age 4,
Janie is enrolled in an intensive program in which she is trained at home
by her mother and several specialists. She is beginning to show real
progress. She now makes eye contact and has begun to talk. She can ask for
things. As a result, she seems happier, less frustrated, and better able
to form connections with others. She's also begun to show some remarkable
skills. She can stack blocks and match objects far beyond her years. And
her memory is amazing. Although her speech is often unclear, she can
recite and act out entire television programs. Her parents' dream is that
she will progress enough to enter a regular kindergarten next year.
When parents learn that their child is autistic, most wish they could
magically make the problem go away. They looked forward to having a baby
and watching their child learn and grow. Instead, they must face the fact
that they have a child who may not live up to their dreams and will daily
challenge their patience. Some families deny the problem or fantasize
about an instant cure. They may take the child from one specialist to
another, hoping for a different diagnosis. It is important for the family
to eventually overcome their pain and deal with the problem, while still
cherishing hopes for their child's future. Most families realize that
their lives can move on.
Today, more than ever before, people with autism can be helped. A
combination of early intervention, special education, family support, and
in some cases, medication, is helping increasing numbers of children with
autism to live more normal lives. Special interventions and education
programs can expand their capacity to learn, communicate, and relate to
others, while reducing the severity and frequency of disruptive behaviors.
Medications can be used to help alleviate certain autism symptoms. Older children
and adults like Paul may also benefit from autism treatments that are
available today. So, while no cure is in sight, it is possible to greatly
improve the day-to-day life of children and adults with autism.
Today, a child who receives effective therapy and education has every
hope of using his or her unique capacity to learn. Even some who are
seriously mentally retarded can often master many self-help skills like
cooking, dressing, doing laundry, and handling money. For such children,
greater independence and self-care may be the primary training goals.
Other youngsters may go on to learn basic academic skills, like reading,
writing, and simple math. Many complete high school. Some, like Temple
Grandin, may even earn college degrees. Like anyone else, their personal
interests provide strong incentives to learn. Clearly, an important factor
in developing a child's long-term potential for independence and success
is early intervention. The sooner a child begins to receive help, the more
opportunity for learning. Furthermore, because a young child's brain is
still forming, scientists believe that early intervention gives children
the best chance of developing their full potential. Even so, no matter
when the child is diagnosed, it's never too late to begin autism treatments.
A number of treatment approaches have evolved in the decades since
autism was first identified. Some therapeutic programs focus on developing
skills and replacing dysfunctional behaviors with more appropriate ones.
Others focus on creating a stimulating learning environment tailored to
the unique needs of children with autism.
Researchers have begun to identify factors that make certain autism treatment
programs more effective in reducing- or reversing-the limitations imposed
by autism. Treatment programs that build on the child's interests, offer a
predictable schedule, teach tasks as a series of simple steps, actively
engage the child's attention in highly structured activities, and provide
regular reinforcement of behavior, seem to produce the greatest gains.
Parent involvement has also emerged as a major factor in the success of
autism treatments. Parents work with teachers and therapists to identify the
behaviors to be changed and the skills to be taught. Recognizing that
parents are the child's earliest teachers, more programs are beginning to
train parents to continue the therapy at home. Research is beginning to
suggest that mothers and fathers who are trained to work with their child
can be as effective as professional teachers and therapists.
Autism Treatments: Developmental approaches
Professionals have found that many children with autism learn best in
an environment that builds on their skills and interests while
accommodating their special needs. Programs employing a developmental
approach provide consistency and structure along with appropriate levels
of stimulation. For example, a predictable schedule of activities each day
helps children with autism plan and organize their experiences. Using a
certain area of the classroom for each activity helps students know what
they are expected to do. For those with sensory problems, activities that
sensitize or desensitize the child to certain kinds of stimulation may be
In one developmental
preschool classroom, a typical session starts with a physical activity to
help develop balance, coordination, and body awareness. Children string
beads, piece puzzles together, paint and participate in other structured
activities. At snack time, the teacher encourages social interaction and
models how to use language to ask for more juice. Later, the teacher
stimulates creative play by prompting the children to pretend being a
train. As in any classroom, the children learn by doing.
Although higher-functioning children may be able to handle academic
work, they too need help to organize the task and avoid distractions. A
student with autism might be assigned the same addition problems as her
classmates. But instead of assigning several pages in the textbook, the
teacher might give her one page at a time or make a list of specific tasks
to be checked off as each is done.
Autism Treatments: Behaviorist approaches
When people are rewarded for a certain behavior, they are more likely
to repeat or continue that behavior. Behaviorist training approaches are
based on this principle. When children with autism are rewarded each time
they attempt or perform a new skill, they are likely to perform it more
often. With enough practice, they eventually acquire the skill. For
example, a child who is rewarded whenever she looks at the therapist may
gradually learn to make eye contact on her own.
Dr. O. Ivar Lovaas pioneered the use of behaviorist methods for
children with autism more than 25 years ago. His methods involve
time-intensive, highly structured, repetitive sequences in which a child
is given a command and rewarded each time he responds correctly. For
example, in teaching a young boy to sit still, a therapist might place him
in front of chair and tell him to sit. If the child doesn't respond, the
therapist nudges him into the chair. Once seated, the child is immediately
rewarded in some way. A reward might be a bit of chocolate, a sip of
juice, a hug, or applause-whatever the child enjoys. The process is
repeated many times over a period of up to two hours. Eventually, the
child begins to respond without being nudged and sits for longer periods
of time. Learning to sit still and follow directions then provides a
foundation for learning more complex behaviors. Using this approach for up
to 40 hours a week, some children may be brought to the point of
near-normal behavior. Others are much less responsive to the treatment.
However, some researchers and therapists believe that less intensive
autism treatments, particularly those begun early in a child's life, may be more
efficient and just as effective. So, over the
years, researchers sponsored by NIMH and other agencies have continued to
study and modify the behaviorist approach. Today, some of these
behaviorist treatment programs are more individualized and built around
the child's own interests and capabilities. Many programs also involve
parents or other non-autistic children in teaching the child. Instruction
is no longer limited to a controlled environment, but takes place in
natural, everyday settings. Thus, a trip to the supermarket may be an
opportunity to practice using words for size and shape. Although rewarding
desired behavior is still a key element, the rewards are varied and
appropriate to the situation. A child who makes eye contact may be
rewarded with a smile, rather than candy. NIMH is funding several types of
behaviorist treatment approaches to help determine the best time for
autism treatment to start, the optimum treatment intensity and duration, and the
most effective methods to reach both high- and low-functioning children.
Autism Treatments: Nonstandard approaches
In trying to do everything possible to help their children, many
parents are quick to try new treatments. Some autism treatments are developed by
reputable therapists or by parents of a child with autism, yet when tested
scientifically, cannot be proven to help. Before spending time and money
and possibly slowing their child's progress, the family should talk with
experts and evaluate the findings of objective reviewers. Following are
some of the approaches that have not been shown to be effective in
treating the majority of children with autism:
- Facilitated Communication, which assumes that by supporting a
nonverbal child's arms and fingers so that he can type on a keyboard,
the child will be able to type out his inner thoughts. Several
scientific studies have shown that the typed messages actually reflect
the thoughts of the person providing the support.
- Holding Therapy, in which the parent hugs the child for long
periods of time, even if the child resists. Those who use this technique
contend that it forges a bond between the parent and child. Some claim
that it helps stimulate parts of the brain as the child senses the
boundaries of her own body. There is no scientific evidence, however, to
support these claims.
- Auditory Integration Training, in which the child listens to
a variety of sounds with the goal of improving language comprehension.
Advocates of this method suggest that it helps people with autism
receive more balanced sensory input from their environment. When tested
using scientific procedures, the method was shown to be no more
effective than listening to music.
- Dolman/Delcato Method, in which people are made to crawl and
move as they did at each stage of early development, in an attempt to
learn missing skills. Again, no scientific studies support the
effectiveness of the method.
It is critical that parents obtain reliable, objective information
before enrolling their child in any autism treatment program. Programs that are
not based on sound principles and tested through solid research can do
more harm than good. They may frustrate the child and cause the family to
lose money, time, and hope.
Autism Treatments: Selecting a program
Parents are often disappointed to learn that there is no single best
treatment for all children with autism; possibly not even for a specific
Even after a child has been thoroughly tested and formally diagnosed,
there is no clear "right" course of action. The diagnostic team may
suggest methods of autism treatments and service providers, but ultimately it is up
to the parents to consider their child's unique needs, research the
various options, and decide.
Above all, parents should consider their own sense of what will work
for their child. Keeping in mind that autism takes many forms, parents
need to consider whether a specific program has helped children like their
At the back of this pamphlet is a list of books and associations that
provide more detailed information about each form of therapy and other
Exploring Options in Autism Treatments
Parents may find these questions helpful as they consider various
- How successful has the program been for other children?
- How many children have gone on to placement in a regular
school and how have they performed?
- Do staff members have training and experience in working with
children and adolescents with autism?
- How are activities planned and organized?
- Are there predictable daily schedules and routines?
- How much individual attention will my child receive?
- How is progress measured? Will my child's behavior be closely
observed and recorded?
- Will my child be given tasks and rewards that are personally
- Is the environment designed to minimize distractions?
- Will the program prepare me to continue the therapy at home?
- What is the cost, time commitment, and location of the
No medication can correct the brain structures or impaired nerve
connections that seem to underlie autism. Scientists have found, however,
that drugs developed to treat other disorders with similar symptoms are
sometimes effective in treating the autism symptoms and behaviors that make it
hard for people with autism to function at home, school, or work. It is
important to note that none of the medications described in this section
has been approved for autism by the Food and Drug Administration (FDA).
The FDA is the Federal agency that authorizes the use of drugs for
Medications used to treat anxiety and depression are being explored as
a way to relieve certain autism symptoms. These drugs include
fluoxetine (Prozac™), fluvoxamine (Luvox™), sertraline (Zoloft™), and
clomipramine (Anafranil™). Some scientists believe that autism and these
disorders may share a problem in the functioning of the neurotransmitter
serotonin, which these medications apparently help.
One study found that about 60 percent of patients with autism who used
fluoxetine became less distraught and aggressive. They became calmer and
better able to handle changes in their routine or environment. However,
fenfluramine, another medication that affects serotonin levels, has not
proven to be helpful.
People with an anxiety disorder called obsessive-compulsive disorder
(OCD), like people with autism, are plagued by repetitive actions they
can't control. Based on the premise that the two disorders may be related,
one NIMH research study found that clomipramine, a medication used to
treat OCD, does appear to be effective in reducing obsessive, repetitive
behavior in some people with autism. Children with autism who were given
the medication also seemed less withdrawn, angry, and anxious. But more
research needs to be done to see if the findings of this study can be
Some children with autism experience hyperactivity, the frenzied
activity that is seen in people with attention deficit hyperactivity
disorder (ADHD). Since stimulant drugs like Ritalin™ are helpful in
treating many people with ADHD, doctors have tried them to reduce the
hyperactivity sometimes seen in autism. The drugs seem to be most
effective when given to higher-functioning children with autism who do not
have seizures or other neurological problems.
Because many children with autism have sensory disturbances and often
seem impervious to pain, scientists are also looking for medications that
increase or decrease the transmission of physical sensations. Endorphins
are natural painkillers produced by the body. But in certain people with
autism, the endorphins seem to go too far in suppressing feeling.
Scientists are exploring substances that block the effects of endorphins,
to see if they can bring the sense of touch to a more normal range. Such
drugs may be helpful to children who experience too little sensation. And
once they can sense pain, such children could be less likely to bite
themselves, bang their heads, or hurt themselves in other ways.
Chlorpromazine, theoridazine, and haloperidol have also been used.
Although these powerful drugs are typically used to treat adults with
severe psychiatric disorders, they are sometimes given to people with
autism to temporarily reduce agitation, aggression, and repetitive
behaviors. However, since major tranquilizers are powerful medications
that can produce serious and sometimes permanent side effects, they should
be prescribed and used with extreme caution.
Vitamin B6, taken with magnesium, is also being explored as a way to
stimulate brain activity. Because vitamin B6 plays an important role in
creating enzymes needed by the brain, some experts predict that large
doses might foster greater brain activity in people with autism. However,
clinical studies of the vitamin have been inconclusive and further study
Like drugs, vitamins change the balance of chemicals in the body and
may cause unwanted side effects. For this reason, large doses of vitamins
should only be given under the supervision of a doctor. This is true of
all vitamins and medications.
The Individuals with Disabilities Education Act of 1990 assures a free
and appropriate public education to children with diagnosed learning
deficits. The 1991 version of the law extended services to preschoolers
who are developmentally delayed. As a result, public schools must provide
services to handicapped children including those age 3 to 5. Because of
the importance of early intervention, many states also offer special
services to children from birth to age 3.
The school may also be responsible for providing whatever services are
needed to enable the child to attend school and learn. Such services might
include transportation, speech therapy, occupational therapy, and any
special equipment. Federally funded Parent Training Information Centers
and Protection and Advocacy Agencies in each state can provide information
on the rights of the family and child.
By law, public schools are also required to prepare and carry out a set
of specific instructional goals for every child in a special education
program. The goals are stated as specific skills that the child will be
taught to perform. The list of skills make up what is known as an
"IEP"-the child's Individualized Educational Program. The IEP serves as an
agreement between the school and the family on the educational goals.
Because parents know their child best, they play an important role in
creating this plan. They work closely with the school staff to identify
which skills the child needs most.
In planning the IEP, it's important to focus on what skills are
critical to the child's well-being and future development. For each skill,
parents and teachers should consider these questions: Is this an important
life skill? What will happen if the child isn't trained to do this for
Such questions free parents and teachers to consider alternatives to
training. After several years of valiant effort to teach Alan to tie his
shoelaces, his parents and teachers decided that Alan could simply wear
sneakers with Velcro fasteners, and dropped the skill from Alan's IEP.
After Alan struggled in vain to memorize the multiplication table, they
decided to teach him to use a calculator.
A child's success in school should not be measured against standards
like mastering algebra or completing high school. Rather, progress should
be measured against his or her unique potential for self-care and
self-sufficiency as an adult.
For all children, adolescence is a time of stress and confusion.
No less so for teenagers with autism. Like all children, they need
help in dealing with their budding sexuality. While some behaviors
improve in the teenage years, some get worse. Increased autistic or
aggressive behavior may be one way some teens express their newfound
tension and confusion.
The teenage years are also a time when children become more
socially sensitive and aware. At the age that most teenagers are
concerned with acne, popularity, grades, and dates, teens with
autism may become painfully aware that they are different from their
peers. They may notice that they lack friends. And unlike their
schoolmates, they aren't dating or planning for a career. For some,
the sadness that comes with such realization urges them to learn new
behaviors. Sean Barron, who wrote about his autism in the book,
There's a Boy in Here, describes how the pain of feeling
different motivated him to acquire more normal social skills.
At present, there is no cure for autism. Nor do children outgrow child autism.
But the capacity to learn and develop new skills is within every child.
With time, children with autism mature and new strengths emerge. Many
children with autism seem to go through developmental spurts between ages
5 and 13. Some spontaneously begin to talk-even if repetitively-around age
5 or later. Some, like Paul, become more sociable, or like Alan, more
ready to learn. Over time, and with help, children may learn to play with
toys appropriately, function socially, and tolerate mild changes in
routine. Some children in treatment programs lose enough of their most
disabling autism symptoms to function reasonably well in a regular classroom.
Some children with autism make truly dramatic strides. Of course, those
with normal or near-normal intelligence and those who develop language
tend to have the best outcomes. But even children who start off poorly may
make impressive progress. For example, one boy, after 9 years in a program
that involved parents as co-therapists, advanced from an IQ of 70 to an IQ
of 100 and began to get average grades at a regular school.
While it is natural for parents to hope that their child will "become
normal," they should take pride in whatever strides their child does make.
Many parents, looking back over the years, find their child has progressed
far beyond their initial expectations.
The majority of adults with autism need lifelong training, ongoing
supervision, and reinforcement of skills. The public schools'
responsibility for providing these services ends when the person is past
school age. As the child becomes a young adult, the family is faced with
the challenge of creating a home-based plan or selecting a program or
facility that can offer such services.
In some cases, adults with autism can continue to live at home,
provided someone is there to supervise at all times. A variety of
residential facilities also provide round-the-clock care. Unlike many of
the institutions years ago, today's facilities view residents as people
with human needs, and offer opportunities for recreation and simple, but
meaningful work. Still, some facilities are isolated from the community,
separating people with autism from the rest of the world.
Today, a few cities are exploring new ways to help people with autism
hold meaningful jobs and live and work within the wider community.
Innovative, supportive programs enable adults with autism to live and work
in mainstream society, rather than in a segregated environment.
By teaching and reinforcing good work skills and positive social
behaviors, such programs help people live up to their potential. Work is
meaningful and based on each person's strengths and abilities. For
example, people with autism with good hand-eye coordination who do
complex, repetitive actions are often especially good at assembly and
manufacturing tasks. A worker with a low IQ and few language skills might
be trained to work in a restaurant sorting silverware and folding napkins.
Adults with higher-level skills have been trained to assemble electronic
equipment or do office work.
Based on their skills and interests, participants in such programs fill
positions in printing, retail, clerical, manufacturing, and other
companies. Once they are carefully trained in a task, they are put to work
alongside the regular staff. Like other employees, they are paid for their labor,
receive employee benefits, and are included in staff events like company
picnics and retirement parties. Companies that hire people through such
programs find that these workers make loyal, reliable employees. Employers
find that the autistic behaviors, limited social skills, and even
occasional tantrums or aggression, do not greatly affect the worker's
ability to work efficiently or complete tasks.
Like any other worker, program participants live in houses and
apartments within the community. Under the direction of a residence coach,
each resident shares as much as possible in tasks like meal-planning,
shopping, cooking, and cleanup. For recreation, they go to movies, have
picnics, and eat in restaurants. As they are ready, they are taught skills
that make them more personally independent. Some take pride in having
learned to take a bus on their own, or handling money they've earned
themselves. Job and residence coaches, who serve as a link between the
program participants and the community, are the key to such programs.
There may be as few as two adults with autism assigned to each coach. The
job coach demonstrates the steps of a job to the worker, observes
behavior, and regularly acknowledges good performance. The job coach also
serves as a bridge between the workers with autism and their co-workers.
For example, the coach steps in if a worker loses self-control or presents
any problems on the job. The coach also provides training in specific
social skills, such as waving or saying hello to fellow workers. At home,
the residence coach reinforces social and self-help behaviors, and finds
ways to help people manage their time and responsibilities.
At present, about a third of all people with autism can live and work
in the community with some degree of independence. As scientific research
points the way to more effective therapies and as communities establish
programs that provide proper support, expectations are that this number
The task of rearing a child with autism is among the most demanding and
stressful that a family faces. The child's screaming fits and tantrums can
put everyone on edge. Because the child needs almost constant attention,
brothers and sisters often feel ignored or jealous. Younger children may
need to be reassured that they will not catch autism or grow to become
like their sibling. Older children may be concerned about the prospect of
having a child with autism themselves. The tensions can strain a marriage.
While friends and family may try to be supportive, they can't
understand the difficulties in raising a child with autism. They may
criticize the parents for letting their child "get away" with certain
behaviors and announce how they would handle the child. Some parents of
children with autism feel envious of their friends' children. This may
cause them to grow distant from people who once gave them support.
Families may also be uncomfortable taking their child to public places.
Children who throw tantrums, walk on their toes, flail their arms, or
climb under restaurant tables to play with strangers' socks, can be very
embarrassing. Janie's mother found that once she became willing to explain
to strangers that her child has autism, people were more accepting. Paul's
mother has learned to remind herself, "This is a public place. We have a
right to be here."
Many parents feel deeply disappointed that their child may never engage
in normal activities or attain some of life's milestones. Parents may
mourn that their child may never learn to play baseball, drive, get a
diploma, marry, or have children. However, most parents come to accept
these feelings and focus on helping their children achieve what they can.
Parents begin to find joy and pleasure in their child despite the
Many parents find that others who face the same concerns are their
strongest allies. Parents of children with autism tend to form communities
of mutual caring and support. Parents gain not only encouragement and
inspiration from other families' stories, but also practical advice,
information on the latest research, and referrals to community services
and qualified professionals. By talking with other people who have similar
experiences, families dealing with autism learn they are not alone.
The Autism Society of America, listed at the close of this pamphlet,
has spawned parent support groups in communities across the country. In
such groups, parents share emotional support, affirmation, and suggestions
for solving problems. Its newsletter, the Advocate, is filled with
up-to-date medical and practical information.
Coping StrategiesThe following suggestions are based on the
experiences of families in dealing with autism, and on
NIMH-sponsored studies of effective strategies for dealing with
- Work as a family. In times of stress, family members
tend to take their frustrations out on each other when they most
need mutual support. Despite the difficulties in finding child
care, couples find that taking breaks without their children helps
renew their bonds. The other children also need attention, and
need to have a voice in expressing and solving problems.
- Keep a sense of humor. Parents find that the ability to
laugh and say, "You won't believe what our child has done now!"
helps them maintain a healthy sense of perspective.
- Notice progress. When it seems that all the help, love,
and support is going nowhere, it's important to remember that over
time, real progress is being made. Families are better able to
maintain their hope if they celebrate the small signs of growth
and change they see.
- Take action. Many parents gain strength working with
others on behalf of all children with autism. Working to win
additional resources, community programs, or school services helps
parents see themselves as important contributors to the well-being
of others as well as their own child.
- Plan ahead. Naturally, most parents want to know that
when they die, their offspring will be safe and cared for. Having
a plan in place helps relieve some of the worry. Some parents form
a contract with a professional guardian, who agrees to look after
the interests of the person with autism, such as observing
birthdays and arranging for care.
continues to reveal how the brain-the control center for thought,
language, feelings, and behavior-carries out its functions. The National
Institute of Mental Health (NIMH) funds scientists at centers across the
Nation who are exploring how the brain develops, transmits its signals,
integrates input from the senses, and translates all this into thoughts
and behavior. In recognition of growing scientific gains in brain
research, the President and Congress have officially designated the 1990s
as the "Decade of the Brain."
There are new research initiatives at NIH sponsored by NIMH, NICHD,
NINDS, and NIDCD. As a result, today as never before, investigators from
various scientific disciplines are joining forces to unlock the mysteries
of the brain. Perspective gained from research into the genetic,
biochemical, physiological, and psychological aspects of autism may
provide a more complete view of the disorder.
Every day, NIH-sponsored researchers are learning more about how the
brain develops normally and what can go wrong in the process. Already, for
example, scientists have discovered evidence suggesting that in autism,
brain development slows at some point before week 30 of pregnancy.
Scientists now also have tools and techniques that allow them to
examine the brain in ways that were unthought of just a few years ago. New
imaging techniques that show the living brain in action permit scientists
to observe with surprising clarity how the brain changes as an individual
performs mental tasks, moves, or speaks. Such techniques open windows to
the brain, allowing scientists to learn which brain regions are engaged in
In addition, recent scientific advances are permitting scientists to
break new ground in researching the role of heredity in autism. Using
sophisticated statistical methods along with gene splicing-a technique
that enables scientists to manipulate the microscopic bits of genetic
code-investigators sponsored by NIH and other institutions are searching
for abnormal genes that may be involved in autism. The ability to identify
irregular genes-or the factors that make a gene unstable-may lead to
earlier diagnoses. Meanwhile, scientists are working to determine if there
is a genetic link between autism and other brain disorders commonly
associated with it, such as Tourette Disorder and Tuberous Sclerosis. New
insights into the genetic transmission of these disorders, along with
newly gained knowledge of normal and abnormal brain development should
provide important clues to the causes of autism.
A key to developing our understanding of the human brain is research
involving animals. Like humans, other primates, such as chimpanzees, apes,
and monkeys, have emotions, form attachments, and develop higher-level
thought processes. For this reason, studies of their brain functions and
behavior shed light on human development. Animal studies have proven
invaluable in learning how disruptions to the developing brain affect
behavior, sensory perceptions, and mental development and have led to a
better understanding of autism.
Ultimately, the results of NIMH's extensive research program may
translate into better lives for people with autism. As we get closer to
understanding the brain, we approach a day when we may be able to diagnose
very young children and provide effective autism treatments earlier in the child's
development. As data accumulate on the brain chemicals involved in autism,
we get closer to developing medications that reduce or reverse imbalances.
Someday, we may even have the ability to prevent the disorder. Perhaps
researchers will learn to identify children at risk for autism at birth,
allowing doctors and other health care professionals to provide preventive
therapy before autism symptoms ever develop. Or, as scientists learn more about
the genetic transmission of autism, they may be able to replace any
defective genes before the infant is even born.
Parents often find that books and movies about autism that have happy
endings cheer them, but raise false hopes. In such stories, a parent's
novel approach suddenly works or child autism is simply outgrown.
But there really are no cures for child autism and growth takes time
and patience. Parents should seek practical, realistic sources of
information, particularly those based on careful research.
Similarly, certain sources of information are more reliable than
others. Some popular magazines and newspapers are quick to report new
"miracle cures" before they have been thoroughly researched. Scientific
and professional materials, such as those published by the Autism Society
of America and other organizations that take the time to thoroughly
evaluate such claims, provide current information based on well-documented
data and carefully controlled clinical research.
Keeping on Top of Your Condition
Keeping in tune with your disease or condition not only makes treatment less intimidating but also increases its chance of success, and has been shown to lower a patients risk of complications. As well, as an informed patient, you are better able to discuss your condition and treatment options with your physician.
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The following resources provide a good starting point for gaining
insight, practical information, and support. Further information on autism
can be found at libraries, book stores, and local chapters of the Autism
Society of America.
Books for parents
Baron-Cohen, S., and Bolton, B. Autism: The Facts. New York:
Oxford University Press, 1993.
Harris, S., and Handelman, J. eds. Preschool Programs for Children
with Autism. Austin, TX: PRO-ED, 1993.
Hart, C. A Parent's Guide to Autism, New York: Simon &
Schuster, Pocket Books, 1993.
Lovaas, O. Teaching Developmentally Disabled Children: The ME
Book. Austin, TX: PRO-ED, 1981.
May, J. Circles of Care and Understanding: Support Groups for
Fathers of Children with Special Needs. Bethesda, MD: Association for
the Care of Children's Health, 1993.
Powers, M. Children with Autism: A Parents' Guide. Rockville,
MD: Woodbine House, 1989.
Sacks, O. An Anthropologist on Mars. New York: Knopf, 1995.
Advocacy Manual: A Parent's How-to Guide for Special Education
Services. Pittsburgh: Learning Disabilities Association of America,
Directory for Exceptional Children: A Listing of Educational and
Training Facilities. Boston: Porter Sargent Publications, 1994.
Pocket Guide to Federal Help for Individuals with Disabilities.
Pueblo, CO: U. S. Government Printing Office, Consumer Information Center.
Books for children
Amenta, C. Russell is Extra Special. New York: Magination Press,
Gold, P. Please Don't Say Hello. New York: Human Sciences
Press/Plenum Publications, 1986.
Katz, I., and Ritvo, E. Joey and Sam. Northridge, CA: Real Life
Books for teachers and other interested professionals
Aarons, M., and Gittens, T. The Handbook of Autism. A Guide for
Parents and Professionals. New York: Tavistock/Routledge, 1992.
American Psychiatric Association. Diagnostic and Statistical Manual
of Mental Disorders, Fourth Edition. Washington, D.C.: American
Psychiatric Association, 1994.
Groden, G., and Baron, M., eds. Autism: Strategies for Change.
New York: Gardner Press, 1988.
Simmons, J. The Hidden Child. Rockville, MD: Woodbine House,
Simpson, R., and Zionts, P. Autism : Information and Resources for
Parents, Families, and Professionals. Austin, TX: PRO-ED, 1992.
Smith, M. Autism and Life in the Community: Successful Interventions
for Behavioral Challenges. Baltimore: Paul H. Brookes Publishing Co.,
Smith, M., Belcher, R., and Juhrs, P. A Guide to Successful
Employment for Individuals with Autism. Baltimore: Paul H. Brookes
Publishing Co., 1995.
Autobiographies of people dealing with autism
Barron, J., and Barron, S. There's a Boy in Here, New York:
Simon and Schuster, 1992.
Grandin, T. Thinking In Pictures and Other Reports From My Life with
Autism. New York: Doubleday, 1995.
Grandin, T. Emergence: Labeled Autistic. Novato, CA: Arena
Hart, C. Without Reason: A Family Copes with Two Generations of
Autism. New York: Harper & Row, 1989.
Maurice, C. Let Me Hear Your Voice.: A Family's Triumph over
Autism. New York: Knopf, 1993.
Miedzianik, D. I Hope Some Lass Will Want Me After Reading All
This. Nottingham England: Nottingham University, 1986.
Park, C. The Siege. New York: Harcourt, Brace, World, 1967.
Williams, D. Somebody Somewhere. New York: Times Books, 1994.
Agencies and associations
American Association of University Affiliated Programs for Persons with
Developmental Disabilities (AAUAP)
8630 Fenton Street
Silver Spring, MD 20910
Prepares professionals for careers in the field of developmental
disabilities. Also provides technical assistance and training, and
disseminates information to service providers to support the independence,
productivity, integration, and inclusion into the community of persons
with developmental disabilities and their families.
American Speech-Language-Hearing Association
Rockville, MD 20852
Provides information on speech, language, and hearing disorders, as
well as referrals to certified speech-language pathologists and
The Association of Persons with Severe Handicaps (TASH)
Baltimore, MD 21204
An advocacy group that works toward school and community inclusion of
children and adults with disabilities. Provides information and referrals
to services. Publishes a newsletter and journal.
The Autism National Committee
635 Ardmore Avenue
Publishes "The Communicator," provides referrals, and sponsors an
Autism Research Institute
4182 Adams Ave.
San Diego, CA
Publishes the quarterly journal, Autism Research Review
International. Provides up to date information on current research.
Autism Society of America, Inc.
7910 Woodmont Avenue
Bethesda, MD 20814
(301) 657-0881 or (800)-3-AUTISM
Provides a wide range of services and information to families and
educators. Organizes a national conference. Publishes The Advocate,
with articles by parents and autism experts. Local chapters make referrals
to regional programs and services, and sponsor parent support groups.
Offers information on educating children with autism, including a
bibliography of instructional materials for and about children with
The Beach Center on Families and Disability
University of Kansas
Lawrence, KA 66045
Provides professional and emotional support, as well as education and
training materials to families with members who have disabilities.
Collaborates with professionals and policy makers to influence national
policy toward people with developmental disabilities.
Council for Exceptional Children
11920 Association Drive
(703) 620-3660 or (800) 641-7824
Provides publications for educators. Can also provide referral to ERIC
Clearinghouse for Handicapped and Gifted Children.
Cure Autism Now (CAN)
5225 Wilshire Boulevard
Angeles, CA 90036
Serves as an information exchange for families affected by autism.
Founded by parents dedicated to finding effective biological treatments
for autism. Sponsors talks, conferences, and research.
Department of Education
Office of Special Education Programs
C Street, SW
Mail Stop 2651
Washington, DC 20202
Federal agency providing information on educational rights under the
law, as well as referrals to the Parent Training Information Center and
Protection and Advocacy Agency in each state.
Campus Box 7180
University of North
Chapel Hill, NC 27599-7180
Publishes the Journal of Autism and Developmental Disorders.
Also offers workshops for parents and professionals.
Federation of Families for Children's Mental Health
1101 King St.,
Alexandria, VA 22314
Phone: (703) 684-7710
Provides information, support, and referrals through local chapters
throughout the country. This national parent-run organization focuses on
the needs of families of children and youth with emotional, behavioral, or
Indiana Resource Center on Autism
Institute for the Study of
2853 East Tenth
Bloomington, IN 47408-2601
Offers publications, films and videocassettes on a range oftopics
related to autism.
National Alliance for Autism Research
414 Wall Street, Research
Princeton, NJ 08540
(888)-777-NAAR; (609) 430-9160
Dedicated to advancing biomedical research into the causes, prevention,
and treatment of the autism spectrum disorders. Sponsors research and
National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013-1492
Publishes information for the public and professionals in helping youth
become participating members of the home and the community.
University of California at Los Angeles (UCLA)
1282-A Franz Hall
P.O. Box 951563
Los Angeles, CA
The Son-Rise Program
at The Autism Treatment Center of America
2080 South Undermountain Road
Sheffield, MA 01257
1-877-SON-RISE (toll free)
Since 1983, the Autism Treatment Center of America has provided innovative
training programs for parents and professionals caring for children challenged
by Autism, Autism Spectrum Disorder, Pervasive Developmental Disorder (PDD) and
other developmental difficulties.