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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.
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 routinein 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.
Customarily,
an expert diagnostic team has the responsibility of thoroughly
evaluating the child, assessing the child's unique strengths and
weaknesses, and determining a formal diagnosis. The team will
then meet with the parents to explain the results of the evaluation.
Although
parents may have been aware that something was not "quite
right" with their child, when the diagnosis is given, it
is a devastating blow. At such a time, it is hard to stay focused
on asking questions. But while members of the evaluation team
are together is the best opportunity the parents will have to
ask questions and get recommendations on what further steps they
should take for their child. Learning as much as possible at this
meeting is very important, but it is helpful to leave this meeting
with the name or names of professionals who can be contacted if
the parents have further questions.
Available
Aids
When your child has been evaluated and diagnosed with an autism
spectrum disorder, you may feel inadequate to help your child
develop to the fullest extent of his or her ability. As you begin
to look at treatment options and at the types of aid available
for a child with a disability, you will find out that there is
help for you. It is going to be difficult to learn and remember
everything you need to know about the resources that will be most
helpful. Write down everything. If you keep a notebook, you will
have a foolproof method of recalling information. Keep a record
of the doctors' reports and the evaluation your child has been
given so that his or her eligibility for special programs will
be documented. Learn everything you can about special programs
for your child; the more you know, the more effectively you can
advocate.
Treatment
Options
There is no single best treatment package for all children with
ASD. One point that most professionals agree on is that early
intervention is important; another is that most individuals with
ASD respond well to highly structured, specialized programs.
Before
you make decisions on your child's treatment, you will want to
gather information about the various options available. Learn
as much as you can, look at all the options, and make your decision
on your child's treatment based on your child's needs. You may
want to visit public schools in your area to see the type of program
they offer to special needs children.
As
soon as a child's disability has been identified, instruction
should begin. Effective programs will teach early communication
and social interaction skills. In children younger than 3 years,
appropriate interventions usually take place in the home or a
child care center. These interventions target specific deficits
in learning, language, imitation, attention, motivation, compliance,
and initiative of interaction. Included are behavioral methods,
communication, occupational and physical therapy along with social
play interventions. Often the day will begin with a physical activity
to help develop coordination and body awareness; children string
beads, piece puzzles together, paint, and participate in other
motor skills activities. At snack time the teacher encourages
social interaction and models how to use language to ask for more
juice. The children learn by doing. Working with the children
are students, behavioral therapists, and parents who have received
extensive training. In teaching the children, positive reinforcement
is used.21
Children
older than 3 years usually have school-based, individualized,
special education. The child may be in a segregated class with
other autistic children or in an integrated class with children
without disabilities for at least part of the day. Different localities
may use differing methods but all should provide a structure that
will help the children learn social skills and functional communication.
In these programs, teachers often involve the parents, giving
useful advice in how to help their child use the skills or behaviors
learned at school when they are at home.22
During
middle and high school years, instruction will begin to address
such practical matters as work, community living, and recreational
activities. This should include work experience, using public
transportation, and learning skills that will be important in
community living.23
All
through your child's school years, you will want to be an active
participant in his or her education program. Collaboration between
parents and educators is essential in evaluating your child's
progress.
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