Autism Spectrum Disorders
Continuing Education Material
CEU-Hours.com
See
appendix and bibliography for information related to source/authorship of the materials
utilized for this continuing education activity.
Material published by NIMH and authored by Margaret Strock.
CEU-Hours.com is not affiliated with the NIMH and the NIMH does not endorse or recommend commercial sites or products.
Autism Spectrum
Disorders
(Pervasive
Developmental Disorders)
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babbling toddler suddenly becomes silent, withdrawn, self-abusive, or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 ASDs 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.
<No CEU-Hours.com required reading
beyond this point for 3 hour course>
<Part of original material excluded
to conserve space>
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 <the> child's IEP is
developed, <parents> 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 <parents> (<parents>
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
<the> child's IEP is developed, a meeting is scheduled once a year to
review <the> child's progress and to make any alterations to reflect his
or her changing needs.
If <the> 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.
<Part of original material excluded
to conserve space>
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 <making> decisions on
<a> child's treatment, gather information about the various options
available. Learn as much as you can, look at all the options, and make
<decisions on the treatment> based on <the> 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 childcare 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 <the> child's school
years, <parents and family> will want to be an active participant in his
or her education program. Collaboration between parents and educators is
essential in evaluating <the> 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.
<CEU-Hours.com Note: See FDA website
for latest information on use of medication in children>
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.
<CEU-Hours.com Note: See FDA website
for latest information on use of medication in children>
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 <the> child finishes school, <the family> will
want to search for the best programs and facilities. If you know parents of ASD
adults, ask them about the services available in your community. If <the>
community has little to offer, serve as an advocate and work toward the goal of
improved employment services.
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
1 American Psychiatric Association. Diagnostic and
statistical manual of mental disorders: DSM-IV-TR (fourth edition,
text revision). Washington DC: American Psychiatric Association, 2000.
2 Filipek PA, Accardo PJ, Baranek GT, Cook Jr. EH, Dawson
G, Gordon B, Gravel JS, Johnson CP, Kellen RJ, Levy SE, Minshew NJ, Prizant BM,
Rapin I, Rogers SJ, Stone WL, Teplin S, Tuchman RF, Volkmar FR. The screening
and diagnosis of autism spectrum disorders. Journal of Autism and
Developmental Disorders, 1999; 29(2): 439-484.
3 Newschaffer CJ (Johns Hopkins Bloomberg School of Public
Health). Autism Among Us: Rising Concerns and the Public Health Response
[Video on the Internet]. Public Health Training Network, 2003 June 20.
Available from: http://www.publichealthgrandrounds.unc.edu/autism/webcast.htm.
4 Volkmar FR. Medical Problems, Treatments, and Professionals.
In: Powers MD, ed. Children with Autism: A Parent's Guide, Second Edition.
Bethesda, MD: Woodbine House, 2000; 73-74.
5 Powers MD. What Is Autism? In: Powers MD, ed. Children
with Autism: A Parent's Guide, Second Edition. Bethesda, MD: Woodbine
House, 2000, 28.
6 Smalley SI, Autism and tuberous sclerosis. Journal
of Autism and Developmental Disorders, 1998; 28(5): 407-414.
7 Filipek PA, Accardo PJ, Ashwal S, Baranek GT, Cook Jr.
EH, Dawson G, Gordon B, Gravel JS, Johnson CP, Kallen RJ, Levy SE, Minshew NJ,
Ozonoff S, Prizant BM, Rapin I, Rogers SJ, Stone WL, Teplin SW, Tuchman RF,
Volkmar FR. Practice parameter: screening and diagnosis of autism. Neurology,
2000; 55: 468-479.
8 Baird G, Charman T, Baron-Cohen S, Cox A, Swettenham J,
Wheelwright S, Drew A. A screening instrument for autism at 18 months of age: A
6-year follow-up study. Journal of the American Academy of Child and
Adolescent Psychiatry, 2000; 39: 694-702.
9 Robbins DI, Fein D, Barton MI, Green JA. The modified
checklist for autism in toddlers: an initial study investigating the early
detection of autism and pervasive developmental disorders. Journal of
Autism and Developmental Disorders, 2001; 31(2): 149-151.
10 Stone WL, Coonrod EE, Ousley OY. Brief report: screening
tool for autism in two-year-olds (STAT): development and preliminary data. Journal
of Autism and Developmental Disorders, 2000; 30(6): 607-612.
11 Berument SK, Rutter M, Lord C, Pickles A, Bailey A.
Autism Screening Questionnaire: diagnostic validity. British Journal of
Psychiatry, 1999; 175: 444-451.
12 Ehlers S, Gillberg C, Wing L. A screening questionnaire
for Asperger syndrome and other high-functioning autism spectrum disorders in
school age children. Journal of Autism and Developmental Disorders,
1999; 29(2): 129-141.
13 Garnett MS, Attwood AJ. The Australian scale for
Asperger's syndrome. In: Attwood, Tony. Asperger's Syndrome: A Guide for
Parents and Professionals. London: Jessica Kingsley Publishers, 1997.
14 Scott FJ, Baron-Cohen S, Bolton P, Brayne C. The Cast
(Childhood Asperger Syndrome Test): preliminary development of a UK screen for
mainstream primary-school-age children. Autism, 2002; 2(1): 9-31.
15 Tadevosyan-Leyfer O, Dowd M, Mankoski R, Winklosky B,
Putnam S, McGrath L, Tager-Flusberg H, Folstein SE. A principal components
analysis of the autism diagnostic interview-revised. Journal of the
American Academy of Child and Adolescent Psychiatry, 2003; 42(7):
864-872.
16 Lord C, Risi S, Lambrecht L, Cook EH, Leventhal BL,
DiLavore PC, Pickles A, Rutter M. The autism diagnostic observation
schedule-generic: a standard measure of social and communication deficits
associated with the spectrum of autism. Journal of Autism and
Developmental Disorders, 2000; 30(3): 205-230.
17 Van Bourgondien ME, Marcus LM, Schopler E. Comparison of
DSM-III-R and childhood autism rating scale diagnoses of autism. Journal
of Autism and Developmental Disorders, 1992; 22(4): 493-506.
18 Department of Health and Human Services. Mental Health: A
Report of the Surgeon General. Rockville, MD: Department of Health and Human
Services, Substance Abuse and Mental Health Services Administration, Center for
Mental Health Services, National Institute of Mental Health, 1999.
19 Lovaas OI. Behavioral treatment and normal educational
and intellectual functioning in young autistic children. Journal of
Consulting and Clinical Psychology, 1987; 55: 3-9.
20 McEachin JJ, Smith T, Lovaas OI. Long-term outcome for
children with autism who received early intensive behavioral treatment. American
Journal on Mental Retardation, 1993; 97: 359-372.
21 Couper JJ, Sampson AJ. Children with autism deserve
evidence-based intervention. Medical Journal of Australia, 2003;
178: 424-425.
22 American Academy of Pediatrics Committee on Children With
Disabilities. The pediatrician's role in the diagnosis and management of
autistic spectrum disorder in children. Pediatrics, 2001; 107(5):
1221-1226.
23 Dunlap G, Foxe L. Teaching students with autism. ERIC
EC Digest #E582, 1999 October.
24 Autism Society of America. Biomedical and Dietary
Treatments (Fact Sheet) [cited 2004], 2003. Bethesda, MD: Autism Society of
America. Available from:
http://www.autism-society.org/site/PageServer?pagename=BiomedicalDietaryTreatments.
25 McDougle CJ, Stigler KA, Posey DJ. Treatment of
aggression in children and adolescents with autism and conduct disorder. Journal
of Clinical Psychiatry, 2003; 64 (supplement 4): 16-25.
26 Research Units on Pediatric Psychopharmacology Network.
Risperidone in children with autism and serious behavioral problems. New
England Journal of Medicine, 2002; 347(5): 314-321.
27 Hviid A, Stellfeld M, Wohlfahrt J, Melbye M. Association
between thimerosal-containing vaccine and autism. JAMA, 2003;
290(13): 1763-1766.
28 Akshoomoff N, Pierce K, Courchesne E. The neurobiological
basis of autism from a developmental perspective. Development and
Psychopathology, 2002; 14: 613-634.
29 Korvatska E, Van de Water J, Anders TF, Gershwin ME.
Genetic and immunologic considerations in autism. Neurobiology of Disease,
2002; 9: 107-125.
30 Courchesne E. Carper R, Akshoomoff N. Evidence of brain
overgrowth in the first year of life in autism. JAMA, 2003;
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, Ph.D.; Audrey Thurm, Ph.D.;
Benjamin Vitiello, MD; Douglas Meinecke, Ph.D.; and Judith Cooper, Ph.D.,
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.
NIH Publication No.04-5511
April 2004
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