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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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