Available Aids
When your child has been evaluated and diagnosed with an autism spectrum
disorder, you may feel inadequate to help your child develop to the fullest
extent of his or her ability. As you begin to look at treatment options and
at the types of aid available for a child with a disability, you will find
out that there is help for you. It is going to be difficult to learn and
remember everything you need to know about the resources that will be most
helpful. Write down everything. If you keep a notebook, you will
have a foolproof method of recalling information. Keep a record of the
doctors' reports and the evaluation your child has been given so that his
or her eligibility for special programs will be documented. Learn
everything you can about special programs for your child; the more you
know, the more effectively you can advocate.
For every child eligible for special programs, each state guarantees
special education and related services. The Individuals with Disabilities
Education Act (IDEA) is a Federally mandated program that assures a free
and appropriate public education for children with diagnosed learning
deficits. Usually children are placed in public schools and the school
district pays for all necessary services. These will include, as needed,
services by a speech therapist, occupational therapist, school
psychologist, social worker, school nurse, or aide.
By law, the public schools must prepare and carry out a set of instruction
goals, or specific skills, for every child in a special education program.
The list of skills is known as the child's Individualized Education Program
(IEP). The IEP is an agreement between the school and the family on the
child's goals. When your child's IEP is developed, you will be asked to
attend the meeting. There will be several people at this meeting, including
a special education teacher, a representative of the public schools who is
knowledgeable about the program, other individuals invited by the school or
by you (you may want to bring a relative, a child care provider, or a
supportive close friend who knows your child well). Parents play an
important part in creating the program, as they know their child and his or
her needs best. Once your child's IEP is developed, a meeting is scheduled
once a year to review your child's progress and to make any alterations to
reflect his or her changing needs.
If your child is under 3 years of age and has special needs, he or she
should be eligible for an early intervention program; this program is
available in every state. Each state decides which agency will be the lead
agency in the early intervention program. The early intervention services
are provided by workers qualified to care for toddlers with disabilities
and are usually in the child's home or a place familiar to the child. The
services provided are written into an Individualized Family Service Plan
(IFSP) that is reviewed at least once every 6 months. The plan will
describe services that will be provided to the child, but will also
describe services for parents to help them in daily activities with their
child and for siblings to help them adjust to having a brother or sister
with ASD.
There is a list of resources at the back of the brochure that will be
helpful to you as you look for programs for your child.
Treatment Options
There is no single best treatment package for all children with ASD. One
point that most professionals agree on is that early intervention is
important; another is that most individuals with ASD respond well to highly
structured, specialized programs.
Before you make decisions on your child's treatment, you will want to
gather information about the various options available. Learn as much as
you can, look at all the options, and make your decision on your child's
treatment based on your child's needs. You may want to visit public schools
in your area to see the type of program they offer to special needs
children.
Guidelines used by the Autism Society of America include the following
questions parents can ask about potential treatments:
- Will the treatment result in harm to my child?
- How will failure of the treatment affect my child and family?
- Has the treatment been validated scientifically?
- Are there assessment procedures specified?
- How will the treatment be integrated into my child's current program?
Do not become so infatuated with a given treatment that functional
curriculum, vocational life, and social skills are ignored.
The National Institute of Mental Health suggests a list of questions
parents can ask when planning for their child:
- How successful has the program been for other children?
- How many children have gone on to placement in a regular school and how
have they performed?
- Do staff members have training and experience in working with children
and adolescents with autism?
- How are activities planned and organized?
- Are there predictable daily schedules and routines?
- How much individual attention will my child receive?
- How is progress measured? Will my child's behavior be closely observed
and recorded?
- Will my child be given tasks and rewards that are personally
motivating?
- Is the environment designed to minimize distractions?
- Will the program prepare me to continue the therapy at home?
- What is the cost, time commitment, and location of the program?
Among the many methods available for treatment and education of people
with autism, applied behavior analysis (ABA) has become widely accepted as
an effective treatment. Mental Health: A Report of the Surgeon
General states, "Thirty years of research demonstrated the
efficacy of applied behavioral methods in reducing inappropriate behavior
and in increasing communication, learning, and appropriate social
behavior."19 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.20, 21
An effective treatment program will build on the child's interests, offer
a predictable schedule, teach tasks as a series of simple steps, actively
engage the child's attention in highly structured activities, and provide
regular reinforcement of behavior. Parental involvement has emerged as a
major factor in treatment success. Parents work with teachers and
therapists to identify the behaviors to be changed and the skills to be
taught. Recognizing that parents are the child's earliest teachers, more
programs are beginning to train parents to continue the therapy at
home.
As soon as a child's disability has been identified, instruction should
begin. Effective programs will teach early communication and social
interaction skills. In children younger than 3 years, appropriate
interventions usually take place in the home or a child care center. These
interventions target specific deficits in learning, language, imitation,
attention, motivation, compliance, and initiative of interaction. Included
are behavioral methods, communication, occupational and physical therapy
along with social play interventions. Often the day will begin with a
physical activity to help develop coordination and body awareness; children
string beads, piece puzzles together, paint, and participate in other motor
skills activities. At snack time the teacher encourages social interaction
and models how to use language to ask for more juice. The children learn by
doing. Working with the children are students, behavioral therapists, and
parents who have received extensive training. In teaching the children,
positive reinforcement is used.22
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.23
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.24
All through your child's school years, you will want to be an active
participant in his or her education program. Collaboration between parents
and educators is essential in evaluating your child's progress.
The Adolescent Years
Adolescence is a time of stress and confusion; and it is no less so for
teenagers with autism. Like all children, they need help in dealing with
their budding sexuality. While some behaviors improve during the teenage
years, some get worse. Increased autistic or aggressive behavior may be one
way some teens express their newfound tension and confusion.
The teenage years are also a time when children become more socially
sensitive. At the age that most teenagers are concerned with acne,
popularity, grades, and dates, teens with autism may become painfully aware
that they are different from their peers. They may notice that they lack
friends. And unlike their schoolmates, they aren't dating or planning for a
career. For some, the sadness that comes with such realization motivates
them to learn new behaviors and acquire better social skills.
Dietary and Other Interventions
In an effort to do everything possible to help their children, many
parents continually seek new treatments. Some treatments are developed by
reputable therapists or by parents of a child with ASD. Although an
unproven treatment may help one child, it may not prove beneficial to
another. To be accepted as a proven treatment, the treatment should undergo
clinical trials, preferably randomized, double-blind trials, that would
allow for a comparison between treatment and no treatment. Following are
some of the interventions that have been reported to have been helpful to
some children but whose efficacy or safety has not been proven.
Dietary interventions are based on the idea that 1) food
allergies cause symptoms of autism, and 2) an insufficiency of a specific
vitamin or mineral may cause some autistic symptoms. If parents decide to
try for a given period of time a special diet, they should be sure that the
child's nutritional status is measured carefully.
A diet that some parents have found was helpful to their autistic child is
a gluten-free, casein-free diet. Gluten is a casein-like substance that is
found in the seeds of various cereal plants—wheat, oat, rye, and barley.
Casein is the principal protein in milk. Since gluten and milk are found in
many of the foods we eat, following a gluten-free, casein-free diet is
difficult.
A supplement that some parents feel is beneficial for an autistic child is
Vitamin B6, taken with magnesium (which makes the vitamin effective). The
result of research studies is mixed; some children respond positively, some
negatively, some not at all or very little.5
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.25
Medications Used in Treatment
Medications are often used to treat behavioral problems, such as
aggression, self-injurious behavior, and severe tantrums, that keep the
person with ASD from functioning more effectively at home or school. The
medications used are those that have been developed to treat similar
symptoms in other disorders. Many of these medications are prescribed
"off-label." This means they have not been officially approved by the FDA
for use in children, but the doctor prescribes the medications if he or she
feels they are appropriate for your child. Further research needs to be
done to ensure not only the efficacy but the safety of psychotropic agents
used in the treatment of children and adolescents.
A child with ASD may not respond in the same way to medications as
typically developing children. It is important that parents work with a
doctor who has experience with children with autism. A child should be
monitored closely while taking a medication. The doctor will prescribe the
lowest dose possible to be effective. Ask the doctor about any side effects
the medication may have and keep a record of how your child responds to the
medication. It will be helpful to read the "patient insert" that comes with
your child's medication. Some people keep the patient inserts in a small
notebook to be used as a reference. This is most useful when several
medications are prescribed.
Anxiety and depression. The selective serotonin reuptake
inhibitors (SSRI's) are the medications most often prescribed for symptoms
of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only
one of the SSRI's, fluoxetine, (Prozac®) has been approved by the FDA for
both OCD and depression in children age 7 and older. Three that have been
approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline
(Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and
older.4
Treatment with these medications can be associated with decreased frequency
of repetitive, ritualistic behavior and improvements in eye contact and
social contacts. The FDA is studying and analyzing data to better
understand how to use the SSRI's safely, effectively, and at the lowest
dose possible.
Behavioral problems. Antipsychotic medications have been
used to treat severe behavioral problems. These medications work by
reducing the activity in the brain of the neurotransmitter dopamine. Among
the older, typical antipsychotics, such as haloperidol (Haldol®),
thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in
more than one study to be more effective than a placebo in treating serious
behavioral problems.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 children with autism. The first such study, conducted by
the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP)
Autism Network, was on risperidone (Risperdal®).27
Results of the 8-week study were reported in 2002 and showed that
risperidone was effective and well tolerated for the treatment of severe
behavioral problems in children with autism. The most common side effects
were increased appetite, weight gain and sedation. Further long-term
studies are needed to determine any long-term side effects. Other atypical
antipsychotics that have been studied recently with encouraging results are
olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been
associated with significant weight gain.
Seizures. Seizures are found in one in four persons with
ASD, most often in those who have low IQ or are mute. They are treated with
one or more of the anticonvulsants. These include such medications as
carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®),
and valproic acid (Depakote®). The level of the medication in the blood
should be monitored carefully and adjusted so that the least amount
possible is used to be effective. Although medication usually reduces the
number of seizures, it cannot always eliminate them.
Inattention and hyperactivity. Stimulant medications such
as methylphenidate (Ritalin®), used safely and effectively in persons with
attention deficit hyperactivity disorder, have also been prescribed for
children with autism. These medications may decrease impulsivity and
hyperactivity in some children, especially those higher functioning
children.
Several other medications have been used to treat ASD symptoms; among them
are other antidepressants, naltrexone, lithium, and some of the
benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The
safety and efficacy of these medications in children with autism has not
been proven. Since people may respond differently to different medications,
your child's unique history and behavior will help your doctor decide which
medication might be most beneficial.
Addendum to Autism Spectrum Disorders February 2007
This addendum to the booklet Autism Spectrum Disorders was
prepared to clarify information contained in the booklet; and to provide
updated information on the prevalence of autism spectrum disorders.
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 children and adolescents ages 5 to
16. The approval is the first for the use of a drug to treat behaviors
associated with autism in children. 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 children, including children 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
children with autism. Fluoxetine (Prozac) and sertraline (Zoloft) are
approved by the FDA for children age 7 and older with obsessive-compulsive
disorder. Fluoxetine is also approved for children 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 people, especially adolescents 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 children and adolescents
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
children, adolescents 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.
Add your own comment