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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.
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 children 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 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.
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 Autism Spectrum Disorders:
Does not babble, point, or make meaningful gestures by 1 year of age
Does not speak one word by 16 months
Does not combine two words by 2 years
Does not respond to name
Loses language or social skills
Some Other Indicators
Poor eye contact
Doesn't seem to know how to play with toys
Excessively lines up toys or other objects
Is attached to one particular toy or object
Doesn't smile
At times seem to be hearing impaired
Social Symptoms
From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices,
grasp a finger, and even smile.In contrast, most children 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 people, 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 parents' displays of anger or affection
in a typical way. Research has suggested that although children with ASD are attached to their parents, their expression of
this attachment is unusual and difficult to "read." To parents, it may seem as if their child is not attached at all.
Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of
the expected and typical attachment behavior.
Children 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 child 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, people with ASD have difficulty
seeing things from another person's perspective. Most 5-year-olds understand that other people 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
other people's actions.
Although not universal, it is common for people 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 children 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 children 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 children 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 children parrot what they hear, a condition called echolalia.
Although many children with no ASD go through a stage where they repeat what they hear, it normally passes by the time they are 3.
Some children 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 children 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 children 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, people 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 children do whatever they can to get through to others. As people 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 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 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 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.
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.
One in four children with ASD develops seizures, often starting either in early childhood or adolescence. 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. 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.
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.
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.
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.8 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),9 the modified Checklist for Autism in Toddlers
(M-CHAT),10 the Screening Tool for Autism in Two-Year-Olds (STAT),11 and the Social Communication Questionnaire (SCQ)12
(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),13 the Australian Scale for Asperger's Syndrome,14 and the most recent, the
Childhood Asperger Syndrome Test (CAST),15 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. 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.
In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised
ADI-R)16 and the Autism Diagnostic Observation Schedule (ADOS-G).17 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 child'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 children with ASD.
Still another instrument often used by professionals is the Childhood Autism Rating Scale (CARS).18 It aids in evaluating the child's
body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with
children over 2 years of age. The examiner observes the child and also obtains relevant information from the parents. The child's
behavior is rated on a scale based on deviation from the typical behavior of children of the same age. Two other tests that should be
used to assess any child with a developmental delay are a formal audiologic hearing evaluation and a lead screening. Although some
hearing loss can co-occur with ASD, some children with ASD may be incorrectly thought to have such a loss. In addition, if the child
has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for children who remain for a long
period of time in the oral-motor stage in which they put any and everything into their mouths. Children with an autistic disorder
usually have elevated blood lead levels. 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.
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.
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." 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.
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.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.
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.
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