|
 Autism
Spectrum Disorders (Pervasive Developmental Disorders)
A detailed booklet that describes symptoms, causes, and
treatments, with information on getting help and coping.
National Institute of Mental Health, NIH Publication
No.04-5511, April 2004
Original URL:
http://www.nimh.nih.gov/publicat/autism.cfm
For more articles like this
visit
https://www.bridges4kids.org.
Not until the
middle of the twentieth century was there a name for a disorder
that now appears to affect an estimated one of every five
hundred children, a disorder that causes disruption in families
and unfulfilled lives for many children. In 1943 Dr. Leo Kanner
of the Johns Hopkins Hospital studied a group of 11 children and
introduced the label early infantile autism into the English
language. At the same time a German scientist, Dr. Hans
Asperger, described a milder form of the disorder that became
known as Asperger syndrome. Thus these two disorders were
described and are today listed in the Diagnostic and Statistical
Manual of Mental Disorders DSM-IV-TR (fourth edition, text
revision)1 as two of the five pervasive developmental disorders
(PDD), more often referred to today as autism spectrum disorders
(ASD). All these disorders are characterized by varying degrees
of impairment in communication skills, social interactions, and
restricted, repetitive and stereotyped patterns of behavior.
The autism spectrum disorders can often be reliably detected by
the age of 3 years, and in some cases as early as 18 months.2
Studies suggest that many children eventually may be accurately
identified by the age of 1 year or even younger. The appearance
of any of the warning signs of ASD is reason to have a child
evaluated by a professional specializing in these disorders.
Parents are usually the first to notice unusual behaviors in
their child. In some cases, the baby seemed "different" from
birth, unresponsive to people or focusing intently on one item
for long periods of time. The first signs of an ASD can also
appear in children who seem to have been developing normally.
When an engaging, babbling toddler suddenly becomes silent,
withdrawn, self-abusive, or indifferent to social overtures,
something is wrong. Research has shown that parents are usually
correct about noticing developmental problems, although they may
not realize the specific nature or degree of the problem.
The pervasive developmental disorders, or autism spectrum
disorders, range from a severe form, called autistic disorder,
to a milder form, Asperger syndrome. If a child has symptoms of
either of these disorders, but does not meet the specific
criteria for either, the diagnosis is called pervasive
developmental disorder not otherwise specified (PDD-NOS). Other
rare, very severe disorders that are included in the autism
spectrum disorders are Rett syndrome and childhood
disintegrative disorder. This brochure will focus on classic
autism, PDD-NOS, and Asperger syndrome, with brief descriptions
of Rett syndrome and childhood disintegrative disorder on the
following page.
Rare Autism Spectrum Disorders
Rett Syndrome
Rett syndrome is relatively rare, affecting almost
exclusively females, one out of 10,000 to 15,000. After a period
of normal development, sometime between 6 and 18 months,
autism-like symptoms begin to appear. The little girl's mental
and social development regresses—she no longer responds to her
parents and pulls away from any social contact. If she has been
talking, she stops; she cannot control her feet; she wrings her
hands. Some of the problems associated with Rett syndrome can be
treated. Physical, occupational, and speech therapy can help
with problems of coordination, movement, and speech.
Scientists sponsored by the National Institute of Child Health
and Human Development have discovered that a mutation in the
sequence of a single gene can cause Rett syndrome. This
discovery may help doctors slow or stop the progress of the
syndrome. It may also lead to methods of screening for Rett
syndrome, thus enabling doctors to start treating these children
much sooner, and improving the quality of life these children
experience.*
Childhood Disintegrative Disorder
Very few children who have an autism spectrum disorder (ASD)
diagnosis meet the criteria for childhood disintegrative
disorder (CDD). An estimate based on four surveys of ASD found
fewer than two children per 100,000 with ASD could be classified
as having CDD. This suggests that CDD is a very rare form of ASD.
It has a strong male preponderance.** Symptoms may appear by age
2, but the average age of onset is between 3 and 4 years. Until
this time, the child has age-appropriate skills in communication
and social relationships. The long period of normal development
before regression helps differentiate CDD from Rett syndrome.
The loss of such skills as vocabulary are more dramatic in CDD
than they are in classical autism. The diagnosis requires
extensive and pronounced losses involving motor, language, and
social skills.*** CDD is also accompanied by loss of bowel and
bladder control and oftentimes seizures and a very low IQ.
*Rett syndrome. NIH Publication No. 01-4960. Rockville, MD:
National Institute of Child Health and Human Development, 2001.
Available at
http://www.nichd.nih.gov/publications/pubskey.cfm?from=autism
**Frombonne E. Prevalence of childhood disintegrative disorder.
Autism, 2002; 6(2): 149-157.
***Volkmar RM and Rutter M. Childhood disintegrative disorder:
Results of the DSM-IV autism field trial. Journal of the
American Academy of Child and Adolescent Psychiatry, 1995; 34:
1092-1095.
What Are the Autism Spectrum Disorders?
The autism spectrum disorders are more common in the
pediatric population than are some better known disorders such
as diabetes, spinal bifida, or Down syndrome.2 Prevalence
studies have been done in several states and also in the United
Kingdom, Europe, and Asia. Prevalence estimates range from 2 to
6 per 1,000 children. This wide range of prevalence points to a
need for earlier and more accurate screening for the symptoms of
ASD. The earlier the disorder is diagnosed, the sooner the child
can be helped through treatment interventions. Pediatricians,
family physicians, daycare providers, teachers, and parents may
initially dismiss signs of ASD, optimistically thinking the
child is just a little slow and will "catch up." Although early
intervention has a dramatic impact on reducing symptoms and
increasing a child's ability to grow and learn new skills, it is
estimated that only 50 percent of children are diagnosed before
kindergarten.
All children with ASD demonstrate deficits in 1) social
interaction, 2) verbal and nonverbal communication, and 3)
repetitive behaviors or interests. In addition, they will often
have unusual responses to sensory experiences, such as certain
sounds or the way objects look. Each of these symptoms runs the
gamut from mild to severe. They will present in each individual
child differently. For instance, a child may have little trouble
learning to read but exhibit extremely poor social interaction.
Each child will display communication, social, and behavioral
patterns that are individual but fit into the overall diagnosis
of ASD.
Children with ASD 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 in
communication and social skills become more noticeable as the
child lags further behind other children the same age. Some
other children start off well enough. Oftentimes between 12 and
36 months old, the differences in the way they react to people
and other unusual behaviors become apparent. Some parents report
the change as being sudden, and that their children start to
reject people, act strangely, and lose language and social
skills they had previously acquired. In other cases, there is a
plateau, or leveling, of progress so that the difference between
the child with autism and other children the same age becomes
more noticeable.
ASD is defined by a certain set of behaviors that can range from
the very mild to the severe. The following possible indicators
of ASD were identified on the Public Health Training Network
Webcast, Autism Among Us.3
Possible Indicators of Autism Spectrum Disorders
Does not babble, point, or make meaningful gestures by 1
year of age
Does not speak one word by 16 months
Does not combine two words by 2 years
Does not respond to name
Loses language or social skills
Some Other Indicators
Poor eye contact
Doesn't seem to know how to play with toys
Excessively lines up toys or other objects
Is attached to one particular toy or object
Doesn't smile
At times seems to be hearing impaired
Social Symptoms
From the start, typically developing infants are social beings.
Early in life, they gaze at people, turn toward voices, grasp a
finger, and even smile.
In contrast, most children with ASD 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 indifferent
to other people, and often seem to prefer being alone. They may
resist attention or passively accept hugs and cuddling. Later,
they seldom seek comfort or respond to parents' displays of
anger or affection in a typical way. Research has suggested that
although children with ASD are attached to their parents, their
expression of this attachment is unusual and difficult to
"read." To parents, it may seem as if their child is not
attached at all. Parents who looked forward to the joys of
cuddling, teaching, and playing with their child may feel
crushed by this lack of the expected and typical attachment
behavior.
Children with ASD also are slower in learning 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 frowning 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
ASD have difficulty 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 ASD may lack such understanding. This inability
leaves them unable to predict or understand other people's
actions.
Although not universal, it is common for people with ASD also to
have difficulty regulating their emotions. This can take the
form of "immature" behavior such as crying in class or verbal
outbursts that seem inappropriate to those around them. The
individual with ASD might also be disruptive and physically
aggressive at times, making social relationships still more
difficult. They have a tendency to "lose control," particularly
when they're in a strange or overwhelming environment, or when
angry and frustrated. They may at times break things, attack
others, or hurt themselves. In their frustration, some bang
their heads, pull their hair, or bite their arms.
Communication Difficulties
By age 3, most children have passed 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 clear that the
answer is "no."
Some children diagnosed with ASD remain mute throughout their
lives. Some infants who later show signs of ASD coo and babble
during the first few months of life, but they soon stop. Others
may be delayed, developing language as late as age 5 to 9. Some
children may learn to use communication systems such as pictures
or sign language.
Those who do speak often use language in unusual ways. They seem
unable to combine words into meaningful sentences. Some speak
only single words, while others repeat the same phrase over and
over. Some ASD children parrot what they hear, a condition
called echolalia. Although many children with no ASD go through
a stage where they repeat what they hear, it normally passes by
the time they are 3.
Some children only mildly affected may exhibit slight delays in
language, or even seem to have precocious language and unusually
large vocabularies, but have great difficulty in sustaining a
conversation. The "give and take" of normal conversation is hard
for them, although they often carry on a monologue on a favorite
subject, giving no one else an opportunity to comment. Another
difficulty is often the inability to understand body language,
tone of voice, or "phrases of speech." They might interpret a
sarcastic expression such as "Oh, that's just great" as meaning
it really IS great.
While it can be hard to understand what ASD children are saying,
their body language is also difficult to understand. Facial
expressions, movements, and gestures rarely match what they are
saying. Also, their tone of voice fails to reflect their
feelings. A high-pitched, sing-song, or flat, robot-like voice
is common. Some children with relatively good language skills
speak like little adults, failing to pick up on the "kid-speak"
that is common in their peers.
Without meaningful gestures or the language to ask for things,
people with ASD are at a loss to let others know what they need.
As a result, they may simply scream or grab what they want.
Until they are taught better ways to express their needs, ASD
children do whatever they can to get through to others. As
people with ASD grow up, they can become increasingly aware of
their difficulties in understanding others and in being
understood. As a result they may become anxious or depressed.
Repetitive Behaviors
Although children with ASD usually appear physically normal and
have good muscle control, odd repetitive motions may set them
off from other children. These behaviors might be extreme and
highly apparent or more subtle. Some children and older
individuals spend a lot of time repeatedly flapping their arms
or walking on their toes. Some suddenly freeze in position.
As children, they might spend hours lining up their cars and
trains in a certain way, rather than using them for pretend
play. If someone accidentally moves one of the toys, the child
may be tremendously upset. ASD children need, and demand,
absolute consistency in their environment. A slight change in
any routine—in mealtimes, dressing, taking a bath, going to
school at a certain time and by the same route—can be extremely
disturbing. Perhaps order and sameness lend some stability in a
world of confusion.
Repetitive behavior sometimes takes the form of a persistent,
intense preoccupation. For example, the child might be obsessed
with learning all about vacuum cleaners, train schedules, or
lighthouses. Often there is great interest in numbers, symbols,
or science topics.
Problems That May Accompany ASD
Sensory problems. 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, the child's experiences of the
world can be confusing. Many ASD children are highly attuned or
even painfully sensitive to certain sounds, textures, tastes,
and smells. Some children find the feel of clothes touching
their skin almost unbearable. Some sounds—a vacuum cleaner, a
ringing telephone, a sudden storm, even the sound of waves
lapping the shoreline—will cause these children to cover their
ears and scream.
In ASD, the brain seems unable to balance the senses
appropriately. Some ASD children are oblivious to extreme cold
or pain. An ASD child may fall and break an arm, yet never cry.
Another may bash his head against a wall and not wince, but a
light touch may make the child scream with alarm.
Mental retardation. Many children with ASD have some degree of
mental impairment. When tested, some areas of ability may be
normal, while others may be especially weak. For example, a
child with ASD may do well on the parts of the test that measure
visual skills but earn low scores on the language subtests.
Seizures. One in four children with ASD develops seizures, often
starting either in early childhood or adolescence.4 Seizures,
caused by abnormal electrical activity in the brain, can produce
a temporary loss of consciousness (a "blackout"), a body
convulsion, unusual movements, or staring spells. Sometimes a
contributing factor is a lack of sleep or a high fever. An EEG
(electroencephalogram—recording of the electric currents
developed in the brain by means of electrodes applied to the
scalp) can help confirm the seizure's presence.
In most cases, seizures can be controlled by a number of
medicines called "anticonvulsants." The dosage of the medication
is adjusted carefully so that the least possible amount of
medication will be used to be effective.
Fragile X syndrome. This disorder is the most common inherited
form of mental retardation. It was so named because one part of
the X chromosome has a defective piece that appears pinched and
fragile when under a microscope. Fragile X syndrome affects
about two to five percent of people with ASD. It is important to
have a child with ASD checked for Fragile X, especially if the
parents are considering having another child. For an unknown
reason, if a child with ASD also has Fragile X, there is a
one-in-two chance that boys born to the same parents will have
the syndrome.5 Other members of the family who may be
contemplating having a child may also wish to be checked for the
syndrome.
Tuberous Sclerosis. Tuberous sclerosis is a rare genetic
disorder that causes benign tumors to grow in the brain as well
as in other vital organs. It has a consistently strong
association with ASD. One to 4 percent of people with ASD also
have tuberous sclerosis.6
The Diagnosis of Autism Spectrum Disorders
Although there are many concerns about labeling a young
child with an ASD, the earlier the diagnosis of ASD is made, the
earlier needed interventions can begin. Evidence over the last
15 years indicates that intensive early intervention in optimal
educational settings for at least 2 years during the preschool
years results in improved outcomes in most young children with
ASD.2
In evaluating a child, clinicians rely on behavioral
characteristics to make a diagnosis. Some of the characteristic
behaviors of ASD may be apparent in the first few months of a
child's life, or they may appear at any time during the early
years. For the diagnosis, problems in at least one of the areas
of communication, socialization, or restricted behavior must be
present before the age of 3. The diagnosis requires a two-stage
process. The first stage involves developmental screening during
"well child" check-ups; the second stage entails a comprehensive
evaluation by a multidisciplinary team.7
Screening
A "well child" check-up should include a developmental
screening test. If your child's pediatrician does not routinely
check your child with such a test, ask that it be done. Your own
observations and concerns about your child's development will be
essential in helping to screen your child.7 Reviewing family
videotapes, photos, and baby albums can help parents remember
when each behavior was first noticed and when the child reached
certain developmental milestones.
Several screening instruments have been developed to quickly
gather information about a child's social and communicative
development within medical settings. Among them are the
Checklist of Autism in Toddlers (CHAT),8 the modified Checklist
for Autism in Toddlers (M-CHAT),9 the Screening Tool for Autism
in Two-Year-Olds (STAT),10 and the Social Communication
Questionnaire (SCQ)11 (for children 4 years of age and older).
Some screening instruments rely solely on parent responses to a
questionnaire, and some rely on a combination of parent report
and observation. Key items on these instruments that appear to
differentiate children with autism from other groups before the
age of 2 include pointing and pretend play. Screening
instruments do not provide individual diagnosis but serve to
assess the need for referral for possible diagnosis of ASD.
These screening methods may not identify children with mild ASD,
such as those with high-functioning autism or Asperger syndrome.
During the last few years, screening instruments have been
devised to screen for Asperger syndrome and higher functioning
autism. The Autism Spectrum Screening Questionnaire (ASSQ),12
the Australian Scale for Asperger's Syndrome,13 and the most
recent, the Childhood Asperger Syndrome Test (CAST),14 are some
of the instruments that are reliable for identification of
school-age children with Asperger syndrome or higher functioning
autism. These tools concentrate on social and behavioral
impairments in children without significant language delay.
If, following the screening process or during a routine "well
child" check-up, your child's doctor sees any of the possible
indicators of ASD, further evaluation is indicated.
Comprehensive Diagnostic Evaluation
The second stage of diagnosis must be comprehensive in order
to accurately rule in or rule out an ASD or other developmental
problem. This evaluation may be done by a multidisciplinary team
that includes a psychologist, a neurologist, a psychiatrist, a
speech therapist, or other professionals who diagnose children
with ASD.
Because ASD's are complex disorders and may involve other
neurological or genetic problems, a comprehensive evaluation
should entail neurologic and genetic assessment, along with
in-depth cognitive and language testing.7 In addition, measures
developed specifically for diagnosing autism are often used.
These include the Autism Diagnosis Interview-Revised (ADI-R)15
and the Autism Diagnostic Observation Schedule (ADOS-G).16 The
ADI-R is a structured interview that contains over 100 items and
is conducted with a caregiver. It consists of four main
factors—the child's communication, social interaction,
repetitive behaviors, and age-of-onset symptoms. The ADOS-G is
an observational measure used to "press" for socio-communicative
behaviors that are often delayed, abnormal, or absent in
children with ASD.
Still another instrument often used by professionals is the
Childhood Autism Rating Scale (CARS).17 It aids in evaluating
the child's body movements, adaptation to change, listening
response, verbal communication, and relationship to people. It
is suitable for use with children over 2 years of age. The
examiner observes the child and also obtains relevant
information from the parents. The child's behavior is rated on a
scale based on deviation from the typical behavior of children
of the same age.
Two other tests that should be used to assess any child with a
developmental delay are a formal audiologic hearing evaluation
and a lead screening. Although some hearing loss can co-occur
with ASD, some children with ASD may be incorrectly thought to
have such a loss. In addition, if the child has suffered from an
ear infection, transient hearing loss can occur. Lead screening
is essential for children who remain for a long period of time
in the oral-motor stage in which they put any and everything
into their mouths. Children with an autistic disorder usually
have elevated blood lead levels.7
Customarily, an expert diagnostic team has the responsibility of
thoroughly evaluating the child, assessing the child's unique
strengths and weaknesses, and determining a formal diagnosis.
The team will then meet with the parents to explain the results
of the evaluation.
Although parents may have been aware that something was not
"quite right" with their child, when the diagnosis is given, it
is a devastating blow. At such a time, it is hard to stay
focused on asking questions. But while members of the evaluation
team are together is the best opportunity the parents will have
to ask questions and get recommendations on what further steps
they should take for their child. Learning as much as possible
at this meeting is very important, but it is helpful to leave
this meeting with the name or names of professionals who can be
contacted if the parents have further questions.
Available Aids
When your child has been evaluated and diagnosed with an
autism spectrum disorder, you may feel inadequate to help your
child develop to the fullest extent of his or her ability. As
you begin to look at treatment options and at the types of aid
available for a child with a disability, you will find out that
there is help for you. It is going to be difficult to learn and
remember everything you need to know about the resources that
will be most helpful. Write down everything. If you keep a
notebook, you will have a foolproof method of recalling
information. Keep a record of the doctors' reports and the
evaluation your child has been given so that his or her
eligibility for special programs will be documented. Learn
everything you can about special programs for your child; the
more you know, the more effectively you can advocate.
For every child eligible for special programs, each state
guarantees special education and related services. The
Individuals with Disabilities Education Act (IDEA) is a
Federally mandated program that assures a free and appropriate
public education for children with diagnosed learning deficits.
Usually children are placed in public schools and the school
district pays for all necessary services. These will include, as
needed, services by a speech therapist, occupational therapist,
school psychologist, social worker, school nurse, or aide.
By law, the public schools must prepare and carry out a set of
instruction goals, or specific skills, for every child in a
special education program. The list of skills is known as the
child's Individualized Education Program (IEP). The IEP is an
agreement between the school and the family on the child's
goals. When your child's IEP is developed, you will be asked to
attend the meeting. There will be several people at this
meeting, including a special education teacher, a representative
of the public schools who is knowledgeable about the program,
other individuals invited by the school or by you (you may want
to bring a relative, a child care provider, or a supportive
close friend who knows your child well). Parents play an
important part in creating the program, as they know their child
and his or her needs best. Once your child's IEP is developed, a
meeting is scheduled once a year to review your child's progress
and to make any alterations to reflect his or her changing
needs.
If your child is under 3 years of age and has special needs, he
or she should be eligible for an early intervention program;
this program is available in every state. Each state decides
which agency will be the lead agency in the early intervention
program. The early intervention services are provided by workers
qualified to care for toddlers with disabilities and are usually
in the child's home or a place familiar to the child. The
services provided are written into an Individualized Family
Service Plan (IFSP) that is reviewed at least once every 6
months. The plan will describe services that will be provided to
the child, but will also describe services for parents to help
them in daily activities with their child and for siblings to
help them adjust to having a brother or sister with ASD.
There is a list of resources at the back of the brochure that
will be helpful to you as you look for programs for your child.
Treatment Options
There is no single best treatment package for all children
with ASD. One point that most professionals agree on is that
early intervention is important; another is that most
individuals with ASD respond well to highly structured,
specialized programs.
Before you make decisions on your child's treatment, you will
want to gather information about the various options available.
Learn as much as you can, look at all the options, and make your
decision on your child's treatment based on your child's needs.
You may want to visit public schools in your area to see the
type of program they offer to special needs children.
Guidelines used by the Autism Society of America include the
following questions parents can ask about potential treatments:
Will the treatment result in harm to my child?
How will failure of the treatment affect my child and family?
Has the treatment been validated scientifically?
Are there assessment procedures specified?
How will the treatment be integrated into my child's current
program? Do not become so infatuated with a given treatment that
functional curriculum, vocational life, and social skills are
ignored.
The National Institute of Mental Health suggests a list of
questions parents can ask when planning for their child:
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?
Among the many methods available for treatment and education of
people with autism, applied behavior analysis (ABA) has become
widely accepted as an effective treatment. Mental Health: A
Report of the Surgeon General states, "Thirty years of research
demonstrated the efficacy of applied behavioral methods in
reducing inappropriate behavior and in increasing communication,
learning, and appropriate social behavior."18 The basic research
done by Ivar Lovaas and his colleagues at the University of
California, Los Angeles, calling for an intensive, one-on-one
child-teacher interaction for 40 hours a week, laid a foundation
for other educators and researchers in the search for further
effective early interventions to help those with ASD attain
their potential. The goal of behavioral management is to
reinforce desirable behaviors and reduce undesirable ones.19, 20
An effective treatment program will 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. Parental involvement has emerged as a major factor in
treatment success. 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.
As soon as a child's disability has been identified, instruction
should begin. Effective programs will teach early communication
and social interaction skills. In children younger than 3 years,
appropriate interventions usually take place in the home or a
child care center. These interventions target specific deficits
in learning, language, imitation, attention, motivation,
compliance, and initiative of interaction. Included are
behavioral methods, communication, occupational and physical
therapy along with social play interventions. Often the day will
begin with a physical activity to help develop coordination and
body awareness; children string beads, piece puzzles together,
paint, and participate in other motor skills activities. At
snack time the teacher encourages social interaction and models
how to use language to ask for more juice. The children learn by
doing. Working with the children are students, behavioral
therapists, and parents who have received extensive training. In
teaching the children, positive reinforcement is used.21
Children older than 3 years usually have school-based,
individualized, special education. The child may be in a
segregated class with other autistic children or in an
integrated class with children without disabilities for at least
part of the day. Different localities may use differing methods
but all should provide a structure that will help the children
learn social skills and functional communication. In these
programs, teachers often involve the parents, giving useful
advice in how to help their child use the skills or behaviors
learned at school when they are at home.22
In elementary school, the child should receive help in any skill
area that is delayed and, at the same time, be encouraged to
grow in his or her areas of strength. Ideally, the curriculum
should be adapted to the individual child's needs. Many schools
today have an inclusion program in which the child is in a
regular classroom for most of the day, with special instruction
for a part of the day. This instruction should include such
skills as learning how to act in social situations and in making
friends. Although higher-functioning children may be able to
handle academic work, they too need help to organize tasks and
avoid distractions.
During middle and high school years, instruction will begin to
address such practical matters as work, community living, and
recreational activities. This should include work experience,
using public transportation, and learning skills that will be
important in community living.23
All through your child's school years, you will want to be an
active participant in his or her education program.
Collaboration between parents and educators is essential in
evaluating your child's progress.
The Adolescent Years
Adolescence is a time of stress and confusion; and it is no less
so for teenagers with autism. Like all children, they need help
in dealing with their budding sexuality. While some behaviors
improve during 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. 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 motivates
them to learn new behaviors and acquire better social skills.
Dietary and Other Interventions
In an effort to do everything possible to help their
children, many parents continually seek new treatments. Some
treatments are developed by reputable therapists or by parents
of a child with ASD. Although an unproven treatment may help one
child, it may not prove beneficial to another. To be accepted as
a proven treatment, the treatment should undergo clinical
trials, preferably randomized, double-blind trials, that would
allow for a comparison between treatment and no treatment.
Following are some of the interventions that have been reported
to have been helpful to some children but whose efficacy or
safety has not been proven.
Dietary interventions are based on the idea that 1) food
allergies cause symptoms of autism, and 2) an insufficiency of a
specific vitamin or mineral may cause some autistic symptoms. If
parents decide to try for a given period of time a special diet,
they should be sure that the child's nutritional status is
measured carefully.
A diet that some parents have found was helpful to their
autistic child is a gluten-free, casein-free diet. Gluten is a
casein-like substance that is found in the seeds of various
cereal plants—wheat, oat, rye, and barley. Casein is the
principal protein in milk. Since gluten and milk are found in
many of the foods we eat, following a gluten-free, casein-free
diet is difficult.
A supplement that some parents feel is beneficial for an
autistic child is Vitamin B6, taken with magnesium (which makes
the vitamin effective). The result of research studies is mixed;
some children respond positively, some negatively, some not at
all or very little.4
In the search for treatment for autism, there has been
discussion in the last few years about the use of secretin, a
substance approved by the Food and Drug Administration (FDA) for
a single dose normally given to aid in diagnosis of a
gastrointestinal problem. Anecdotal reports have shown
improvement in autism symptoms, including sleep patterns, eye
contact, language skills, and alertness. Several clinical trials
conducted in the last few years have found no significant
improvements in symptoms between patients who received secretin
and those who received a placebo.24
Medications Used in Treatment
Medications are often used to treat behavioral problems,
such as aggression, self-injurious behavior, and severe
tantrums, that keep the person with ASD from functioning more
effectively at home or school. The medications used are those
that have been developed to treat similar symptoms in other
disorders. Many of these medications are prescribed "off-label."
This means they have not been officially approved by the FDA for
use in children, but the doctor prescribes the medications if he
or she feels they are appropriate for your child. Further
research needs to be done to ensure not only the efficacy but
the safety of psychotropic agents used in the treatment of
children and adolescents.
A child with ASD may not respond in the same way to medications
as typically developing children. It is important that parents
work with a doctor who has experience with children with autism.
A child should be monitored closely while taking a medication.
The doctor will prescribe the lowest dose possible to be
effective. Ask the doctor about any side effects the medication
may have and keep a record of how your child responds to the
medication. It will be helpful to read the "patient insert" that
comes with your child's medication. Some people keep the patient
inserts in a small notebook to be used as a reference. This is
most useful when several medications are prescribed.
Anxiety and depression. The selective serotonin reuptake
inhibitors (SSRI's) are the medications most often prescribed
for symptoms of anxiety, depression, and/or obsessive-compulsive
disorder (OCD). Only one of the SSRI's, fluoxetine, (Prozac®)
has been approved by the FDA for both OCD and depression in
children age 7 and older. Three that have been approved for OCD
are fluvoxamine (Luvox®), age 8 and older; sertraline (Zoloft®),
age 6 and older; and clomipramine (Anafranil®), age 10 and
older.4 Treatment with these medications can be associated with
decreased frequency of repetitive, ritualistic behavior and
improvements in eye contact and social contacts. The FDA is
studying and analyzing data to better understand how to use the
SSRI's safely, effectively, and at the lowest dose possible.
Behavioral problems. Antipsychotic medications have been used to
treat severe behavioral problems. These medications work by
reducing the activity in the brain of the neurotransmitter
dopamine. Among the older, typical antipsychotics, such as
haloperidol (Haldol®), thioridazine, fluphenazine, and
chlorpromazine, haloperidol was found in more than one study to
be more effective than a placebo in treating serious behavioral
problems.25 However, haloperidol, while helpful for reducing
symptoms of aggression, can also have adverse side effects, such
as sedation, muscle stiffness, and abnormal movements.
Placebo-controlled studies of the newer "atypical"
antipsychotics are being conducted on children with autism. The
first such study, conducted by the NIMH-supported Research Units
on Pediatric Psychopharmacology (RUPP) Autism Network, was on
risperidone (Risperdal®).26 Results of the 8-week study were
reported in 2002 and showed that risperidone was effective and
well tolerated for the treatment of severe behavioral problems
in children with autism. The most common side effects were
increased appetite, weight gain and sedation. Further long-term
studies are needed to determine any long-term side effects.
Other atypical antipsychotics that have been studied recently
with encouraging results are olanzapine (Zyprexa®) and
ziprasidone (Geodon®). Ziprasidone has not been associated with
significant weight gain.
Seizures. Seizures are found in one in four persons with ASD,
most often in those who have low IQ or are mute. They are
treated with one or more of the anticonvulsants. These include
such medications as carbamazepine (Tegretol®), lamotrigine (Lamictal®),
topiramate (Topamax®), and valproic acid (Depakote®). The level
of the medication in the blood should be monitored carefully and
adjusted so that the least amount possible is used to be
effective. Although medication usually reduces the number of
seizures, it cannot always eliminate them.
Inattention and hyperactivity. Stimulant medications such as
methylphenidate (Ritalin®), used safely and effectively in
persons with attention deficit hyperactivity disorder, have also
been prescribed for children with autism. These medications may
decrease impulsivity and hyperactivity in some children,
especially those higher functioning children.
Several other medications have been used to treat ASD symptoms;
among them are other antidepressants, naltrexone, lithium, and
some of the benzodiazepines such as diazepam (Valium®) and
lorazepam (Ativan®). The safety and efficacy of these
medications in children with autism has not been proven. Since
people may respond differently to different medications, your
child's unique history and behavior will help your doctor decide
which medication might be most beneficial.
Adults with an Autism Spectrum Disorder
Some adults with ASD, especially those with high-functioning
autism or with Asperger syndrome, are able to work successfully
in mainstream jobs. Nevertheless, communication and social
problems often cause difficulties in many areas of life. They
will continue to need encouragement and moral support in their
struggle for an independent life.
Many others with ASD are capable of employment in sheltered
workshops under the supervision of managers trained in working
with persons with disabilities. A nurturing environment at home,
at school, and later in job training and at work, helps persons
with ASD continue to learn and to develop throughout their
lives.
The public schools' responsibility for providing services ends
when the person with ASD reaches the age of 22. The family is
then faced with the challenge of finding living arrangements and
employment to match the particular needs of their adult child,
as well as the programs and facilities that can provide support
services to achieve these goals. Long before your child finishes
school, you will want to search for the best programs and
facilities for your young adult. If you know other parents of
ASD adults, ask them about the services available in your
community. If your community has little to offer, serve as an
advocate for your child and work toward the goal of improved
employment services. Research the resources listed in the back
of this brochure to learn as much as possible about the help
your child is eligible to receive as an adult.
Living Arrangements for the Adult with an Autism Spectrum
Disorder
Independent living. Some adults with ASD are able to live
entirely on their own. Others can live semi-independently in
their own home or apartment if they have assistance with solving
major problems, such as personal finances or dealing with the
government agencies that provide services to persons with
disabilities. This assistance can be provided by family, a
professional agency, or another type of provider.
Living at home. Government funds are available for families that
choose to have their adult child with ASD live at home. These
programs include Supplemental Security Income (SSI), Social
Security Disability Insurance (SSDI), Medicaid waivers, and
others. Information about these programs is available from the
Social Security Administration (SSA). An appointment with a
local SSA office is a good first step to take in understanding
the programs for which the young adult is eligible.
Foster homes and skill-development homes. Some families open
their homes to provide long-term care to unrelated adults with
disabilities. If the home teaches self-care and housekeeping
skills and arranges leisure activities, it is called a
"skill-development" home.
Supervised group living. Persons with disabilities frequently
live in group homes or apartments staffed by professionals who
help the individuals with basic needs. These often include meal
preparation, housekeeping, and personal care needs. Higher
functioning persons may be able to live in a home or apartment
where staff only visit a few times a week. These persons
generally prepare their own meals, go to work, and conduct other
daily activities on their own.
Institutions. Although the trend in recent decades has been to
avoid placing persons with disabilities into long-term-care
institutions, this alternative is still available for persons
with ASD who need intensive, constant supervision. Unlike many
of the institutions years ago, today's facilities view residents
as individuals with human needs and offer opportunities for
recreation and simple but meaningful work.
Research into Causes and Treatment of Autism Spectrum
Disorders
Research into the causes, the diagnosis, and the treatment
of autism spectrum disorders has advanced in tandem. With new
well-researched standardized diagnostic tools, ASD can be
diagnosed at an early age. And with early diagnosis, the
treatments found to be beneficial in recent years can be used to
help the child with ASD develop to his or her greatest
potential.
In the past few years, there has been public interest in a
theory that suggested a link between the use of thimerosal, a
mercury-based preservative used in the measles-mumps-rubella
(MMR) vaccine, and autism. Although mercury is no longer found
in childhood vaccines in the United States, some parents still
have concerns about vaccinations. Many well-done, large-scale
studies have now been done that have failed to show a link
between thimerosal and autism. A panel from the Institute of
Medicine is now examining these studies, including a large
Danish study that concluded that there was no causal
relationship between childhood vaccination using
thimerosal-containing vaccines and the development of an autism
spectrum disorder,27 and a U.S. study looking at exposure to
mercury, lead, and other heavy metals.
Research on the Biologic Basis of ASD
Because of its relative inaccessibility, scientists have
only recently been able to study the brain systematically. But
with the emergence of new brain imaging tools—computerized
tomography (CT), positron emission tomography (PET), single
photon emission computed tomography (SPECT), and magnetic
resonance imaging (MRI), study of the structure and the
functioning of the brain can be done. With the aid of modern
technology and the new availability of both normal and autism
tissue samples to do postmortem studies, researchers will be
able to learn much through comparative studies.
Postmortem and MRI studies have shown that many major brain
structures are implicated in autism. This includes the
cerebellum, cerebral cortex, limbic system, corpus callosum,
basal ganglia, and brain stem.28 Other research is focusing on
the role of neurotransmitters such as serotonin, dopamine, and
epinephrine.
Research into the causes of autism spectrum disorders is being
fueled by other recent developments. Evidence points to genetic
factors playing a prominent role in the causes for ASD. Twin and
family studies have suggested an underlying genetic
vulnerability to ASD.29 To further research in this field, the
Autism Genetic Resource Exchange, a project initiated by the
Cure Autism Now Foundation, and aided by an NIMH grant, is
recruiting genetic samples from several hundred families. Each
family with more than one member diagnosed with ASD is given a
2-hour, in-home screening. With a large number of DNA samples,
it is hoped that the most important genes will be found. This
will enable scientists to learn what the culprit genes do and
how they can go wrong.
Another exciting development is the Autism Tissue Program
(http://www.brainbank.org), supported by the Autism Society of
America Foundation, the Medical Investigation of
Neurodevelopmental Disorders (M.I.N.D.) Institute at the
University of California, Davis, and the National Alliance for
Autism Research. The program is aided by a grant to the Harvard
Brain and Tissue Resource Center (http://www.brainbank.mclean.org),
funded by the National Institute of Mental Health (NIMH) and the
National Institute of Neurological Disorders and Stroke (NINDS).
Studies of the postmortem brain with imaging methods will help
us learn why some brains are large, how the limbic system
develops, and how the brain changes as it ages. Tissue samples
can be stained and will show which neurotransmitters are being
made in the cells and how they are transported and released to
other cells. By focusing on specific brain regions and
neurotransmitters, it will become easier to identify
susceptibility genes.
Recent neuroimaging studies have shown that a contributing cause
for autism may be abnormal brain development beginning in the
infant's first months. This "growth dysregulation hypothesis"
holds that the anatomical abnormalities seen in autism are
caused by genetic defects in brain growth factors. It is
possible that sudden, rapid head growth in an infant may be an
early warning signal that will lead to early diagnosis and
effective biological intervention or possible prevention of
autism.30
For detailed information on autism spectrum disorders research,
see NIMH research fact sheet, Autism Spectrum Disorders
Research.
The Children's Health Act of 2000—What It Means to Autism
Research
The Children's Health Act of 2000 was responsible for the
creation of the Interagency Autism Coordinating Committee (IACC),
a committee that includes the directors of five NIH
institutes—the National Institute of Mental Health, the National
Institute of Neurological Disorders and Stroke, the National
Institute on Deafness and Other Communication Disorders (NIDCD),
the National Institute of Child Health and Human Development (NICHD),
and the National Institute of Environmental Health Sciences (NIEHS)—as
well as representatives from the Health Resource Services
Administration, the National Center on Birth Defects and
Developmental Disabilities (a part of the Centers for Disease
Control), the Agency for Toxic Substances and Disease Registry,
the Substance Abuse and Mental Health Services Administration,
the Administration on Developmental Disabilities, the Centers
for Medicare and Medicaid Services, the U.S. Food and Drug
Administration, and the U.S. Department of Education. The
Committee, instructed by the Congress to develop a 10-year
agenda for autism research, introduced the plan, dubbed a
"matrix" or a "roadmap," at the first Autism Summit Conference
in November 2003. The roadmap indicates priorities for research
for years 1 to 3, years 4 to 6, and years 7 to 10.
The five NIH institutes of the IACC have established the Studies
to Advance Autism Research and Treatment (STAART) Network,
composed of eight network centers. They will conduct research in
the fields of developmental neurobiology, genetics, and
psychopharmacology. Each center is pursuing its own particular
mix of studies, but there also will be multi-site clinical
trials within the STAART network.
The STAART centers are located at the following sites:
University of North Carolina, Chapel Hill
Yale University, Connecticut
University of Washington, Seattle
University of California, Los Angeles
Mount Sinai Medical School, New York
Kennedy Krieger Institute, Maryland
Boston University, Massachusetts
University of Rochester, New York
A data coordination center will analyze the data generated by
both the STAART network and the Collaborative Programs of
Excellence in Autism (CPEA). This latter program, funded by the
NICHD and the NIDCD Network on the Neurobiology and Genetics of
Autism, consists of 10 sites. The CPEA is at present studying
the world's largest group of well-diagnosed individuals with
autism characterized by genetic and developmental profiles.
The CPEA centers are located at:
Boston University, Massachusetts
University of California, Davis
University of California, Irvine
University of California, Los Angeles
Yale University, Connecticut
University of Washington, Seattle
University of Rochester, New York
University of Texas, Houston
University of Pittsburgh, Pennsylvania
University of Utah, Salt Lake City
The NIEHS has programs at:
Center for Childhood Neurotoxicology and Assessment, University
of Medicine & Dentistry, New Jersey
The Center for the Study of Environmental Factors in the
Etiology of Autism, University of California, Davis
References
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25 McDougle CJ, Stigler KA, Posey DJ. Treatment of aggression in
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27 Hviid A, Stellfeld M, Wohlfahrt J, Melbye M. Association
between thimerosal-containing vaccine and autism. JAMA, 2003;
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28 Akshoomoff N, Pierce K, Courchesne E. The neurobiological
basis of autism from a developmental perspective. Development
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29 Korvatska E, Van de Water J, Anders TF, Gershwin ME. Genetic
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290(3): 337-344.
This brochure was written by Margaret Strock, Office of
Communications, NIMH. Scientific information and review were
provided by NIMH staff members Stephen Foote, MD; Ann Wagner,
PhD; Audrey Thurm, PhD; Benjamin Vitiello, MD; Douglas Meinecke,
PhD; and Judith Cooper, PhD, National Institute on Deafness and
Other Communication Disorders. Editorial assistance was provided
by Ruth Dubois and Antoinette Cooper.
All material in this brochure is in the public domain and may be
reproduced or copied without permission from the Institute.
Citation of the National Institute of Mental Health as the
source is appreciated.
Citation for this publication:
Strock, Margaret (2004). Autism Spectrum Disorders (Pervasive
Developmental Disorders). NIH Publication No. NIH-04-5511,
National Institute of Mental Health, National Institutes of
Health, U.S. Department of Health and Human Services, Bethesda,
MD, 40 pp.
http://www.nimh.nih.gov/publicat/autism.cfm.
To order a printed copy, call 1-866-615-NIMH (6464) toll-free.
For additional information, please visit the NIMH Web site at:
http://www.nimh.nih.gov.
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