All About Autism Spectrum Disorders
Moms and dads are usually the first to notice unusual behaviors in their
youngster. In some cases, the baby seemed "different" from birth,
unresponsive to individuals or focusing intently on one item for long
periods of time. The first signs of an Autism Spectrum Disorder (ASD)
can also appear in kids 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an engaging, babbling toddler suddenly becomes silent, withdrawn,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 moms and dads are usually correct about noticing
developmental problems, although they may not realize the specific
nature or degree of the problem.
ASD range from a severe form, called autistic disorder, to a milder
form, Aspergers. If a youngster 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 ASD are Rett syndrome and childhood disintegrative disorder.
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 moms and dads 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 Youngster 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 kids much sooner, and improving the quality of life these kids
experience.
Childhood Disintegrative Disorder:
Very few kids who have an ASD diagnosis meet the criteria for childhood
disintegrative disorder (CDD). An estimate based on four surveys of ASD
found fewer than two kids 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 youngster
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 (e.g., vocabulary) is 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.
What Are the Autism Spectrum Disorders?
The ASD are more common in the pediatric population than are some better
known disorders such as diabetes, spinal bifida, or Down syndrome.
Prevalence studies have been done in several states and also in the
United Kingdom, Europe, and Asia. A recent study of a U.S. metropolitan
area estimated that 3.4 of every 1,000 kids 3-10 years old had autism.
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 youngster can be helped through treatment
interventions. Pediatricians, family doctors, daycare providers,
educators, and moms and dads may initially dismiss signs of ASD,
optimistically thinking the youngster is just a little slow and will
"catch up." Although early intervention has a dramatic impact on
reducing symptoms and increasing a youngster's ability to grow and learn
new skills, it is estimated that only 50 percent of kids are diagnosed
before kindergarten.
All kids 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 youngster differently. For instance, a
youngster may have little trouble learning to read but exhibit extremely
poor social interaction. Each youngster will display communication,
social, and behavioral patterns that are individual but fit into the
overall diagnosis of ASD.
Kids with ASD do not follow the typical patterns of child development.
In some kids, hints of future problems may be apparent from birth. In
most cases, the problems in communication and social skills become more
noticeable as the youngster lags further behind other kids the same age.
Some other kids start off well enough. Oftentimes between 12 and 36
months old, the differences in the way they react to individuals and
other unusual behaviors become apparent. Some moms and dads report the
change as being sudden, and that their kids start to reject individuals,
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 youngster with autism and other kids
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.
Possible Indicators of ASD:
• Does not babble, point, or make meaningful gestures by 1 year of age
• Does not combine two words by 2 years
• Does not respond to name
• Does not speak one word by 16 months
• Loses language or social skills
Some Other Indicators:
• At times seems to be hearing impaired
• Doesn't seem to know how to play with toys
• Doesn't smile
• Excessively lines up toys or other objects
• Is attached to one particular toy or object
• Poor eye contact
Social Symptoms
From the start, typically developing infants are social beings. Early in
life, they gaze at individuals, turn toward voices, grasp a finger, and
even smile.
In contrast, most kids 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 individuals, 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
moms and dads' displays of anger or affection in a typical way. Research
has suggested that although kids with ASD are attached to their moms
and dads, their expression of this attachment is unusual and difficult
to "read." To moms and dads, it may seem as if their youngster is not
attached at all. Moms and dads who looked forward to the joys of
cuddling, teaching, and playing with their youngster may feel crushed by
this lack of the expected and typical attachment behavior.
Kids 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 youngster 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, individuals with ASD have difficulty seeing things from another
person's perspective. Most 5-year-olds understand that other
individuals 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 the actions of others.
Although not universal, it is common for individuals 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 kids 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 kids 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 kids 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 kids
parrot what they hear, a condition called echolalia. Although many kids
with no ASD go through a stage where they repeat what they hear, it
normally passes by the time they are 3.
Some kids 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 kids 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 kids 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,
individuals 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 kids do whatever they
can to get through to others. As individuals 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 kids with ASD usually appear physically normal and have good
muscle control, odd repetitive motions may set them off from other kids.
These behaviors might be extreme and highly apparent or more subtle.
Some kids and older individuals spend a lot of time repeatedly flapping
their arms or walking on their toes. Some suddenly freeze in position.
As kids, 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 youngster may be tremendously
upset. ASD kids 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 youngster 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:
1. 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 individuals with ASD. It is important to have a youngster with ASD
checked for Fragile X, especially if the moms and dads are considering
having another youngster. For an unknown reason, if a youngster with ASD
also has Fragile X, there is a one-in-two chance that boys born to the
same moms and dads will have the syndrome. 6 Other members of the family
who may be contemplating having a youngster may also wish to be checked
for the syndrome.
2. Mental retardation- Many kids 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 youngster with ASD may do
well on the parts of the test that measure visual skills but earn low
scores on the language subtests.
3. Seizures- One in four kids with ASD develops seizures, often
starting either in early childhood or adolescence. 5 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.
4. Sensory problems. When kid's perceptions are accurate, they can
learn from what they see, feel, or hear. On the other hand, if sensory
information is faulty, the youngster's experiences of the world can be
confusing. Many ASD kids are highly attuned or even painfully sensitive
to certain sounds, textures, tastes, and smells. Some kids 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 kids to cover their ears and
scream. In ASD, the brain seems unable to balance the senses
appropriately. Some ASD kids are oblivious to extreme cold or pain. An
ASD youngster 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
youngster scream with alarm.
5. 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 four
percent of individuals with ASD also have tuberous sclerosis.
The Diagnosis of ASD
Although there are many concerns about labeling a young youngster 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 kids with ASD.
In evaluating a youngster, 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 youngster'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 youngster" check-ups; the second stage entails a
comprehensive evaluation by a multidisciplinary team.
Screening
A "well child" check-up should include a developmental screening test.
If your youngster's pediatrician does not routinely check your youngster
with such a test, ask that it be done. Your own observations and
concerns about your youngster's development will be essential in helping
to screen your youngster. Reviewing family videotapes, photos, and baby
albums can help moms and dads remember when each behavior was first
noticed and when the youngster reached certain developmental milestones.
Several screening instruments have been developed to quickly gather
information about a youngster's social and communicative development
within medical settings. Among them are the Checklist of Autism in
Toddlers (CHAT), the modified Checklist for Autism in Toddlers (M-CHAT),
the Screening Tool for Autism in Two-Year-Olds (STAT), and the Social
Communication Questionnaire (SCQ)12 (for kids 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
kids 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 kids with
mild ASD, such as those with high-functioning autism or Aspergers.
During the last few years, screening instruments have been devised to
screen for Aspergers and higher functioning autism. The Autism Spectrum
Screening Questionnaire (ASSQ), the Australian Scale for Asperger's
Syndrome, and the most recent, the Childhood Aspergers Test (CAST), are
some of the instruments that are reliable for identification of
school-age kids with Aspergers or higher functioning autism. These tools
concentrate on social and behavioral impairments in kids without
significant language delay.
If, following the screening process or during a routine "well youngster"
check-up, your youngster'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 kids 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.8 In addition, measures developed specifically for diagnosing
autism are often used. These include the Autism Diagnosis
Interview-Revised (ADI-R) and the Autism Diagnostic Observation Schedule
(ADOS-G). 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 youngster'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 kids with ASD.
Still another instrument often used by professionals is the Childhood
Autism Rating Scale (CARS). It aids in evaluating the youngster's body
movements, adaptation to change, listening response, verbal
communication, and relationship to individuals. It is suitable for use
with kids over 2 years of age. The examiner observes the youngster and
also obtains relevant information from the moms and dads. The
youngster's behavior is rated on a scale based on deviation from the
typical behavior of kids of the same age.
Two other tests that should be used to assess any youngster with a
developmental delay are a formal audiologic hearing evaluation and a
lead screening. Although some hearing loss can co-occur with ASD, some
kids with ASD may be incorrectly thought to have such a loss. In
addition, if the youngster has suffered from an ear infection, transient
hearing loss can occur. Lead screening is essential for kids who remain
for a long period of time in the oral-motor stage in which they put any
and everything into their mouths. Kids with an autistic disorder
usually have elevated blood lead levels.
Customarily, an expert diagnostic team has the responsibility of
thoroughly evaluating the youngster, assessing the youngster's unique
strengths and weaknesses, and determining a formal diagnosis. The team
will then meet with the moms and dads to explain the results of the
evaluation.
Although moms and dads may have been aware that something was not "quite
right" with their youngster, 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 moms and dads will have to ask questions and get
recommendations on what further steps they should take for their
youngster. 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 moms and dads have
further questions.
Available Aids
When your youngster has been evaluated and diagnosed with an ASD, you
may feel inadequate to help your youngster 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 youngster 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 youngster has been given
so that his or her eligibility for special programs will be documented.
Learn everything you can about special programs for your youngster; the
more you know, the more effectively you can advocate.
For every youngster 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 kids with diagnosed
learning deficits. Usually kids 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 youngster in a special
education program. The list of skills is known as the youngster's
Individualized Education Program (IEP). The IEP is an agreement between
the school and the family on the youngster's goals. When your
youngster's IEP is developed, you will be asked to attend the meeting.
There will be several individuals 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 youngster care provider,
or a supportive close friend who knows your youngster well). Moms and
dads play an important part in creating the program, as they know their
youngster and his or her needs best. Once your youngster's IEP is
developed, a meeting is scheduled once a year to review your youngster's
progress and to make any alterations to reflect his or her changing
needs.
If your youngster 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 youngster's home or a place familiar
to the youngster. 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 youngster, but will also describe services for moms and dads to
help them in daily activities with their youngster and for siblings to
help them adjust to having a brother or sister with ASD.
Treatment Options
There is no single best treatment package for all kids 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 youngster'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
youngster's treatment based on your youngster's needs. You may want to
visit public schools in your area to see the type of program they offer
to special needs kids.
Guidelines used by the Autism Society of America include the following questions moms and dads can ask about potential treatments:
- Are there assessment procedures specified?
- Has the treatment been validated scientifically?
- How will failure of the treatment affect my youngster and family?
- How will the treatment be integrated into my youngster's current program?
- Will the treatment result in harm to my youngster?
The National Institute of Mental Health suggests a list of questions moms and dads can ask when planning for their youngster:
- Are there predictable daily schedules and routines?
- Do staff members have training and experience in working with kids and teens with autism?
- How are activities planned and organized?
- How is progress measured?
- Will my youngster's behavior be closely observed and recorded?
- How many kids have gone on to placement in a regular school and how have they performed?
- How much individual attention will my youngster receive?
- How successful has the program been for other kids?
- Is the environment designed to minimize distractions?
- What is the cost, time commitment, and location of the program?
- Will my youngster be given tasks and rewards that are personally motivating?
- Will the program prepare me to continue the therapy at home?
Among the many methods available for treatment and education of
individuals 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." The basic research done by Ivar Lovaas and his
colleagues at the University of California, Los Angeles, calling for an
intensive, one-on-one youngster-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.
An effective treatment program will build on the youngster's interests,
offer a predictable schedule, teach tasks as a series of simple steps,
actively engage the youngster's attention in highly structured
activities, and provide regular reinforcement of behavior. Parental
involvement has emerged as a major factor in treatment success. Moms and
dads work with educators and therapists to identify the behaviors to be
changed and the skills to be taught. Recognizing that moms and dads are
the youngster's earliest educators, more programs are beginning to
train moms and dads to continue the therapy at home.
As soon as a youngster's disability has been identified, instruction
should begin. Effective programs will teach early communication and
social interaction skills. In kids younger than 3 years, appropriate
interventions usually take place in the home or a youngster 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; kids 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 kids learn by doing. Working
with the kids are students, behavioral therapists, and moms and dads who
have received extensive training. In teaching the kids, positive
reinforcement is used.
Kids older than 3 years usually have school-based, individualized,
special education. The youngster may be in a segregated class with other
autistic kids or in an integrated class with kids 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 kids learn
social skills and functional communication. In these programs,
educators often involve the moms and dads, giving useful advice in how
to help their youngster use the skills or behaviors learned at school
when they are at home.
In elementary school, the youngster 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 youngster's needs. Many schools today have an inclusion
program in which the youngster 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 kids 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.
All through your youngster's school years, you will want to be an active
participant in his or her education program. Collaboration between moms
and dads and educators is essential in evaluating your youngster'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 kids, 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 kids 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 kids, many moms and
dads continually seek new treatments. Some treatments are developed by
reputable therapists or by moms and dads of a youngster with ASD.
Although an unproven treatment may help one youngster, 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 kids 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 moms and dads decide to try
for a given period of time a special diet, they should be sure that the
youngster's nutritional status is measured carefully.
A diet that some moms and dads have found was helpful to their autistic
youngster 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 moms and dads feel is beneficial for an autistic
youngster is Vitamin B6, taken with magnesium (which makes the vitamin
effective). The result of research studies is mixed; some kids respond
positively, some negatively, some not at all or very little.
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.
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 kids, but the doctor prescribes the medications if he or
she feels they are appropriate for your youngster. Further research
needs to be done to ensure not only the efficacy but the safety of
psychotropic agents used in the treatment of kids and teens.
A youngster with ASD may not respond in the same way to medications as
typically developing kids. It is important that moms and dads work with a
doctor who has experience with kids with autism. A youngster 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 youngster
responds to the medication. It will be helpful to read the "patient
insert" that comes with your youngster's medication. Some individuals
keep the patient inserts in a small notebook to be used as a reference.
This is most useful when several medications are prescribed.
1. 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.
2. 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
kids with autism. These medications may decrease impulsivity and
hyperactivity in some kids, especially those higher functioning kids.
3. 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.26 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 kids with autism. The first such study, conducted by
the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP)
Autism Network, was on risperidone (Risperdal®). 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
kids 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.
4. 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 kids 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.
5. 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 kids with autism has not
been proven. Since individuals may respond differently to different
medications, your youngster's unique history and behavior will help your
doctor decide which medication might be most beneficial.
Adults with an ASD
Some adults with ASD, especially those with high-functioning autism or
with Aspergers, 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 youngster, as well as the programs and
facilities that can provide support services to achieve these goals.
Long before your youngster finishes school, you will want to search for
the best programs and facilities for your young adult. If you know other
moms and dads 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 youngster 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 youngster is
eligible to receive as an adult.
Living Arrangements for the Adult with an ASD:
1. 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.
2. 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.
3. 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.
4. Living at home- Government funds are available for families that
choose to have their adult youngster 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.
5. 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.
Research into Causes and Treatment of ASD
Research into the causes, the diagnosis, and the treatment of ASD 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 youngster 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 moms and dads 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 ASD, 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.29 Other
research is focusing on the role of neurotransmitters such as serotonin,
dopamine, and epinephrine.
Research into the causes of ASD 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.30 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.
Prevalence
In 2007 - the most recent government survey on the rate of autism - the
Centers for Disease Control (CDC) found that the rate is higher than the
rates found from studies conducted in the United States during the
1980s and early 1990s (survey based on data from 2000 and 2002). The CDC
survey assigned a diagnosis of ASD based on health and school records
of 8 year olds in 14 communities throughout the U.S. Debate continues
about whether this represents a true increase in the prevalence of
autism. Changes in the criteria used to diagnose autism, along with
increased recognition of the disorder by professionals and the public
may all be contributing factors. Nonetheless, the CDC report confirms
other recent epidemiologic studies documenting that more kids are being
diagnosed with an ASD than ever before.
Data from an earlier report of the CDC's Atlanta-based program found the
rate of ASD was 3.4 per 1,000 for kids 3 to 10 years of age.
Summarizing this and several other major studies on autism prevalence,
CDC estimates that 2–6 per 1,000 (from 1 in 500 to 1 in 150) kids have
an ASD. The risk is 3-4 times higher in males than females. Compared to
the prevalence of other childhood conditions, this rate is lower than
the rate of mental retardation (9.7 per 1,000 kids), but higher than the
rates for cerebral palsy (2.8 per 1,000 kids), hearing loss (1.1 per
1,000 kids), and vision impairment (0.9 per 1,000 kids). The CDC notes
that these studies do not provide a national estimate.
Fragile X
For an unknown reason, if a youngster with ASD also has Fragile X, there
is a one-in-two chance that boys born to the same moms and dads will
have the syndrome. Other members of the family who may be contemplating
having a youngster may also wish to be checked for the syndrome."
A distinction can be made between a father’s and mother’s ability to
pass along to a daughter or son the altered gene on the X chromosome
that is linked to fragile X syndrome. Because both males (XY) and
females (XX) have at least one X chromosome, both can pass on the
mutated gene to their kids.
A father with the altered gene for Fragile X on his X chromosome will
only pass that gene on to his daughters. He passes a Y chromosome on to
his sons, which doesn’t transmit the condition. Therefore, if the father
has the altered gene on his X chromosome, but the mother’s X
chromosomes are normal, all of the couple’s daughters would have the
altered gene for Fragile X, while none of their sons would have the
mutated gene.
Because mothers pass on only X chromosomes to their kids, if the mother
has the altered gene for Fragile X, she can pass that gene to either her
sons or her daughters. If the mother has the mutated gene on one X
chromosome and has one normal X chromosome, and the father has no
genetic mutations, all the kids have a 50-50 chance of inheriting the
mutated gene.
The odds noted here apply to each youngster the moms and dads have.3
In terms of prevalence, the latest statistics are consistent in showing
that 5% of individuals with autism are affected by fragile X and 10% to
15% of those with fragile X show autistic traits.
Medications
On October 6, 2006 the U.S. Food and Drug Administration (FDA) approved
risperidone (generic name) or Risperdal (brand name) for the symptomatic
treatment of irritability in autistic kids and teens ages 5 to 16. The
approval is the first for the use of a drug to treat behaviors
associated with autism in kids. These behaviors are included under the
general heading of irritability, and include aggression, deliberate
self-injury and temper tantrums.
Olanzapine (Zyprexa) and other antipsychotic medications are used
“off-label” for the treatment of aggression and other serious behavioral
disturbances in kids, including kids with autism. Off-label means a
doctor will prescribe a medication to treat a disorder or in an age
group that is not included among those approved by the FDA.
Other medications are used to address symptoms or other disorders in
kids with autism. Fluoxetine (Prozac) and sertraline (Zoloft) are
approved by the FDA for kids age 7 and older with obsessive-compulsive
disorder. Fluoxetine is also approved for kids age 8 and older for the
treatment of depression.
Fluoxetine and sertraline are antidepressants known as selective
serotonin reuptake inhibitors (SSRIs). Despite the relative safety and
popularity of SSRIs and other antidepressants, some studies have
suggested that they may have unintentional effects on some individuals,
especially teens and young adults. In 2004, after a thorough review of
data, the Food and Drug Administration (FDA) adopted a “black box”
warning label on all antidepressant medications to alert the public
about the potential increased risk of suicidal thinking or attempts in
kids and teens taking antidepressants. In 2007, the agency extended the
warning to include young adults up to age 25. A “black box” warning is
the most serious type of warning on prescription drug labeling. The
warning emphasizes that kids, teens and young adults taking
antidepressants should be closely monitored, especially during the
initial weeks of treatment, for any worsening depression, suicidal
thinking or behavior, or any unusual changes in behavior such as
sleeplessness, agitation, or withdrawal from normal social situations.
Disorders/Vaccinations
The Institute of Medicine (IOM) conducted a thorough review on the issue
of a link between thimerosal (a mercury based preservative that is no
longer used in vaccinations) and autism. The final report from IOM,
Immunization Safety Review: Vaccines and Autism, released in May 2004,
stated that the committee did not find a link.
Until 1999, vaccines given to infants to protect them against
diphtheria, tetanus, pertussis, Haemophilus influenzae type b (Hib), and
Hepatitis B contained thimerosal as a preservative. Today, with the
exception of some flu vaccines, none of the vaccines used in the U.S. to
protect preschool aged kids against 12 infectious diseases contain
thimerosal as a preservative. The MMR vaccine does not and never did
contain thimerosal. Varicella (chickenpox), inactivated polio (IPV), and
pneumococcal conjugate vaccines have also never contained thimerosal.
The Aspergers Comprehensive Handbook
Laman Asal : http://www.myaspergerschild.com/2007/08/autism-spectrum-disorders-pervasive.html