|
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 already
acquired.
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 autism.
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 altogether
|
- 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 behavioral
observations. |
Social
symptoms
From the start, most
infants are social beings. Early in life, they
gaze at people, turn toward voices, endearingly
grasp a finger, and even smile.
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 arms.
Language
difficulties
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. Other behaviors 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.
Sensory
symptoms
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.
Unuasual
abilities
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 wrong.
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 |
| Age |
Skills or
Abilities
Awareness and
Thinking |
Communication |
Movement |
Social |
Self-help |
|
birth-
3 months |
Responds to new sounds
Follows
movement of hands
with eyes
Looks
at object and people
|
Coos
and makes sounds
Smiles at mother's
voice
|
Waves
hands and feet
Grasps objects
Watches
movement of
own hands
|
Enjoys being tickled and
held
Makes brief eye contact
during
feeding
|
Opens
mouth to bottle or
breast and
sucks
|
|
| 3-6 months |
Recognizes mother
Reaches for
things
|
Turns head to sounds and
voices
Begins babbling
Imitates
sounds
Varies cry
|
Lifts
head and chest
Bangs objects in
play
|
Notices strangers and
new
places
Expresses pleasure
or
displeasure
Likes physical
play
|
Eats
baby food from spoon
Reaches for and
holds
bottle
|
|
| 6-9 months |
Imitates simple
gestures
Responds to name
|
Makes nonsense syllables
like gaga
Uses voice to get
attention
|
Crawls
Stands by holding on to
things
Claps hands
Moves objects from
one
hand to the other
|
Plays
peek-a-boo
Enjoys other
children
Understands social signals
like
smiles or harsh
tones
|
Chews
Drink from a cup with
help
|
|
| 9-12 months |
Plays
simple games
Moves to reach desired
objects
Looks at pictures in
books
|
Waves bye-bye
Stops when told
"no"
Imitates new words
|
Walks
holding on to furniture
Deliberately lets go
of an object
Makes markes with a pencil
or
crayon
|
Laughs aloud during play
Shows
preference for one toy
over
another
Responds to adult's change
in
mood
|
Feeds
self with fingers
Drinks from
cup
|
|
| 12-18 months |
Imitates unfamiiar sounds
and gestures
Points to a desired
object
|
Shakes head to mean "no"
Begins
using words
Follows simple
commands
|
Creeps upstairs and
downstairs
Walks alone
Stacks
blocks
|
Repeats a performance
laughed at
Shows emotions like fear
or
anger
Returns a kiss or
hug
|
Moves
to help in dressing
Indicates wet
diaper
|
|
| 18-24 months |
Identifies parts of own
body
Attends to nursery rhymes
Points to
pictures in books
|
Uses
two words to describe
actions
Refers to self by
name
|
Jumps
in place
Pushes and pulls objects
Turns
pages of book one
by one
Uses
fingers and thumb
|
Cries
a bit when parents leave
Becomes easily
frustrated
Pays attention to other
children
|
Zips
Removes clothes
without
help
Unwraps
things
|
|
| 24-36 months |
Matches shapes and
objects
Enjoys picture books
Recognizes
self in mirror
Counts to ten
|
Joins in songs and rhythm
Uses
three-word phrases
Uses simple
pronouns
Follows two instructions
at
a time
|
Kicks
and throws ball
Runs and jumps
Draws
straight lines
Strings beads
|
Pretends and plays make
believe
Avoids dangerous
situations
Initiates play
Attempts to take
turns
|
Feeds
self with spoon
Uses toilet with some
help
|
|
|
Diagnostic
procedures
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
pediatric neurologist.
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 childhood.
Diagnostic
criteria
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 Disorder (PDD).
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 responsibilities.
| 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 impulses
- 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
actions.
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 makeup.
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 inherited.
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.
Mental
retardation
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.
Seizures
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 medication.
Fragile X
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.
Tuberous
Sclerosis
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 of autism.
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 especially helpful.
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 child.
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
own.
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 resources.
Exploring Options in
Autism Treatments
Parents may find these
questions helpful as they consider various
autism treatments:
- 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
motivating?
- 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 program?
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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 specific disorders.
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 repeated.
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 is needed.
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
herself?
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.
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