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:
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Will the treatment result in harm to my child?
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How will failure of the treatment affect my child and family?
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Has the treatment been validated scientifically?
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Are there assessment procedures specified?
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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:
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How successful has the program been for other children?
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How many children have gone on to placement in a regular school
and how have they performed?
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Do staff members have training and experience in working with
children and adolescents with autism?
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How are activities planned and organized?
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Are there predictable daily schedules and routines?
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How much individual attention will my child receive?
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How is progress measured? Will my child's behavior be closely
observed and recorded?
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Will my child be given tasks and rewards that are personally
motivating?
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Is the environment designed to minimize distractions?
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Will the program prepare me to continue the therapy at home?
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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." 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.
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.
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.
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.
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.
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 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. 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. 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®).
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.
Adults with an Autism Spectrum Disorder
Some adults with ASD, especially those with high-functioning autism
or with Asperger syndrome, are able to work successfully in mainstream
jobs. Nevertheless, communication and social problems often cause
difficulties in many areas of life. They will continue to need
encouragement and moral support in their struggle for an independent
life.
Many others with ASD are capable of employment in sheltered workshops
under the supervision of managers trained in working with persons with
disabilities. A nurturing environment at home, at school, and later in
job training and at work, helps persons with ASD continue to learn and
to develop throughout their lives.
The public schools' responsibility for providing services ends when
the person with ASD reaches the age of 22. The family is then faced with
the challenge of finding living arrangements and employment to match the
particular needs of their adult child, as well as the programs and
facilities that can provide support services to achieve these goals.
Long before your child finishes school, you will want to search for the
best programs and facilities for your young adult. If you know other
parents 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 child 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 child is eligible to receive as an
adult.
Living Arrangements for the Adult with an Autism Spectrum Disorder
Independent living. Some adults with ASD are able to
live entirely on their own. Others can live semi-independently in their
own home or apartment if they have assistance with solving major
problems, such as personal finances or dealing with the government
agencies that provide services to persons with disabilities. This
assistance can be provided by family, a professional agency, or another
type of provider.
Living at home. Government funds are available for
families that choose to have their adult child with ASD live at home.
These programs include Supplemental Security Income (SSI), Social
Security Disability Insurance (SSDI), Medicaid waivers, and others.
Information about these programs is available from the Social Security
Administration (SSA). An appointment with a local SSA office is a good
first step to take in understanding the programs for which the young
adult is eligible.
Foster homes and skill-development homes. Some
families open their homes to provide long-term care to unrelated adults
with disabilities. If the home teaches self-care and housekeeping skills
and arranges leisure activities, it is called a
"skill-development" home.
Supervised group living. Persons with disabilities
frequently live in group homes or apartments staffed by professionals
who help the individuals with basic needs. These often include meal
preparation, housekeeping, and personal care needs. Higher functioning
persons may be able to live in a home or apartment where staff only
visit a few times a week. These persons generally prepare their own
meals, go to work, and conduct other daily activities on their own.
Institutions. Although the trend in recent decades
has been to avoid placing persons with disabilities into long-term-care
institutions, this alternative is still available for persons with ASD
who need intensive, constant supervision. Unlike many of the
institutions years ago, today's facilities view residents as individuals
with human needs and offer opportunities for recreation and simple but
meaningful work.
Research into Causes and Treatment of Autism Spectrum Disorders
Research into the causes, the diagnosis, and the treatment of autism
spectrum disorders has advanced in tandem. With new well-researched
standardized diagnostic tools, ASD can be diagnosed at an early age. And
with early diagnosis, the treatments found to be beneficial in recent
years can be used to help the child with ASD develop to his or her
greatest potential.
In the past few years, there has been public interest in a theory
that suggested a link between the use of thimerosal, a mercury-based
preservative used in the measles-mumps-rubella (MMR) vaccine, and
autism. Although mercury is no longer found in childhood vaccines in the
United States, some parents still have concerns about vaccinations. Many
well-done, large-scale studies have now been done that have failed to
show a link between thimerosal and autism. A panel from the Institute of
Medicine is now examining these studies, including a large Danish study
that concluded that there was no causal relationship between childhood
vaccination using thimerosal-containing vaccines and the development of
an autism spectrum disorder, 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. Other research is focusing on
the role of neurotransmitters such as serotonin, dopamine, and
epinephrine.
Research into the causes of autism spectrum disorders is being fueled
by other recent developments. Evidence points to genetic factors playing
a prominent role in the causes for ASD. Twin and family studies have
suggested an underlying genetic vulnerability to ASD.
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.