Understanding Your Child's Condition

What is autism spectrum disorder (ASD)?

ASD includes a range of behavioral symptoms.

The two core features of ASD are:

• Difficulty with social interactions and communication.
• Repetitive behaviors, interests, and activities.

How common is ASD?

About one in every 68 children in the United States has ASD. It is about four times more common in boys than girls. It can affect children of all races and social classes wherever they live. Researchers are not sure what causes ASD.

No two children with ASD are alike

ASD is called a “wide-spectrum disorder” because the symptoms are different for each child. Symptoms can range from mild to severe, and can change as the child grows. No two children with ASD are alike. This makes understanding ASD and finding the best therapies difficult.

Understanding Your Options

How do I make sense of all the different treatments?

Treatments for ASD can be grouped into different categories (see figure below). Each category focuses on a type of treatment.

Because children with ASD may show different symptoms, a family will need to choose from the available treatments, therapies, and programs based on their child’s needs. The treatment plan for your child may have some treatments from each of these categories.

What can the research tell me?

There is a lot of research being done on how to treat the symptoms of ASD in children or to help children overcome the challenges of ASD. But to decide whether something helps or not (or works better than something else), researchers need to look at the results from many studies rather than just one. One study may find that something helped, while another study may find that it did not. The information in this section will tell you about each type of treatment and what researchers found when they looked at all the studies at once.

Behavior programs

These programs address social skills, attention, sleep, play, anxiety, parent interaction, and challenging behaviors. Some programs also help with children’s overall development.

Many of these programs use specially trained providers who work with parents and children for up to 25 hours every week. The programs can last as long as 12 weeks to 3 years. They are held in homes, schools, and clinics.

Early intensive behavioral intervention, cognitive behavioral therapy, and social skills training are types of behavior programs. Early intensive behavioral interventions target children’s overall development. Programs such as the Lovaas Model and Early Start Denver Model mostly focus on working with children. Other programs, such as Pivotal Response Training and Hanen More Than Words, focus on teaching parents how to help their children.

Programs that use cognitive behavioral therapy help children manage anxiety. Coping Cat and Facing Your Fears are examples of this type of program.

Social skills programs address social skills, attention, and play. Programs such as Skillstreaming help older children with their social skills. Programs such as Joint Attention Symbolic Play Engagement and Regulation (JASPER) aim to help younger children with issues such as trouble with cooperative play.

The behavior programs in your area may be based on these or other models. However, they might be called by different names.

Do they help?

• Early intensive behavioral interventions that focus on helping children with their overall development may improve a young child’s reasoning and communication skills. Research is not clear about whether they improve social skills, daily living skills, or the severity of ASD symptoms.
• Programs that focus on teaching parents how to help their children show promise, but researchers do not yet know if they work.
• Cognitive behavioral therapy reduces anxiety in some older children with ASD who do not have other developmental delays and have average reasoning and language skills.
• Social skills programs may help school-age children without other developmental or language delays for short periods of time. More research is needed to know whether children remember and use these skills after the programs end.
• Programs that address how children play may improve children’s social interactions, but more research is needed to know for sure.

What are the costs?

The costs of behavior programs vary by State. Providers have different fees. Insurance may not cover some costs. You should check with your insurance plan to find out about coverage. Other assistance may be available. Ask your doctor.

What else should I think about?

Because of the amount of time involved, you may need to change your family’s schedule or routine to participate in some programs.

Education and learning programs

These programs are offered in schools or other learning centers. They focus on learning and reasoning skills and “whole life” approaches. Schools may have different names for their programs, but many of these programs are based on the Treatment and Education of Autistic and Communication related handicapped CHildren (TEACCH) approach. Programs like TEACCH use visual tools and arrange the classroom in ways that are easier to manage for a child with ASD. Other programs are classroom- or center-based and use “applied behavior analysis” (commonly known as ABA) strategies like positive reinforcement.

Do they help?

• Some children in the TEACCH program showed improvement in motor skills (the ability to walk, run, hold items, or sit up straight), eye-hand coordination, and thinking and reasoning. There were not enough studies for researchers to say for sure, however, whether TEACCH was effective.
• Other education programs have not been studied enough to know if they work.

What are the costs?

Usually, these services are included in the cost of the school or learning center, so there may not be any other costs to you if you are a resident of the school district or community.

What else should I think about?

Your school district or learning center may have other names for these educational approaches, so you may want to ask about the exact types of strategies they use. Schools or other public agencies may be able to help pay for these programs if there are costs.

Medications

What medicines are used to treat ASD symptoms?

• Antipsychotics
  • Risperidone (brand name: Risperdal®)
  • Aripiprazole (brand name: Abilify®)
• Serotonin-reuptake inhibitors or “SRIs” (antidepressants)
  • Examples include Prozac,® Sarafem,® Celexa,® and Cipramil®
• Stimulants and other hyperactivity medicines
  • Examples include Ritalin,® Adderall,® and Tenex®
• Secretin. This medicine is used for digestion problems but some researchers thought it might help children with ASD symptoms as well.
• Chelation. This therapy uses substances to remove heavy metals from the body, which some people think causes autism.

Do they help?

• Research found that two antipsychotic drugs – risperidone (Risperdal®) and aripiprazole (Abilify®) – can help reduce emotional distress, aggression, hyperactivity, and self-injury. Many people who take risperidone and aripiprazole report side effects such as weight gain, sleepiness, tremors, and abnormal movements. Because of these side effects, these medicines may be best only for children who have more severe symptoms or have symptoms that might increase their risk of hurting themselves.
• SRIs and a hyperactivity medicine called methylphenidate (Ritalin®) have not been studied enough to know if they help treat ASD symptoms.
• Research showed that secretin is not effective in improving autistic symptoms.
• According to the U. S. Food and Drug Administration, there are serious safety issues associated with chelation products. Even when used under the care of a doctor, these products can cause serious harm, including dehydration, kidney failure, and death. Research does not support the use of chelation for ASD.

What are the costs?

The cost to you for each type of medicine will depend on your health insurance, the amount (dose) your child needs to take, and whether a generic form of the medicine is available.

Other treatments and therapies

You may have heard or read of other types of treatments or therapies that have been used for children with ASD, such as:

• Speech and language therapy
• Music therapy
• Occupational therapy
• Acupuncture
• Vitamins and mineral supplements
• Massage therapy
• The Picture Exchange Communication System
• Responsive Prelinguistic Milieu Teaching
• Neurofeedback
• Sleep education and training

Do they help?

These other therapies have not been studied enough to know if they help or have any side effects. This does not mean that they do not work or are not safe. It just means that researchers do not have enough information to know for sure.

What else should I think about?

Because little is known about how well these treatments or therapies work, talking about them with your doctor, other health care or education professionals, your family, and other people that you trust may help you decide whether to try them.

Why is there so little known about ASD and these treatments?

The research reviewed for this guide showed that some treatments can make specific improvements in the way a child thinks or acts. But researchers do not have enough information to know whether one type of treatment works better than any other. For most treatments, researchers also do not know which treatments will work best for specific children. For example, research does not show whether a program usually works best for older or younger children, or for children with severe or less severe ASD.

This does not mean that a treatment, therapy, or program will not be helpful for your child. It only means that researchers do not have enough information to say so with strong confidence.

Researchers are still studying these treatments and therapies. Check with your doctor or a support group to find out about new research on the programs and treatments in this guide and about new options.

Making a Decision

There are many things for you to consider when choosing therapies or programs for your child. There are many people you should talk to, including your doctor, social worker, school administrator, and health insurance representative. Here are some questions to ask:

What plan is best for my child?

• Do you think an early intensive intervention would help my child?
• What other types of programs might be helpful?
• Do you think my child would benefit from taking medicine?

What is available in my community?

• Are there any early intensive intervention programs in this community?
• Do the schools in this district have programs for children with ASD?
• What support groups are available?

What are the costs?

• How much will it cost for us to participate in these programs?
• Is help available from the schools or other public agencies?
• Does my health insurance plan cover any costs?

What changes to our work schedules and life will we need to make?

• How much time does each option take?
• What are ways that other families have fit these programs into their lives?
• What else can we do to help our child?

Which medicine, if any, is best for my child?

• What symptoms will the medicines help?
• How soon should I see changes in my child’s symptoms?
• What are the warning signs that my child may be having a harmful side effect?
• What else is available if my child needs different medicine?

Behavior management therapy tries to reinforce wanted behaviors and reduce unwanted behaviors. It also suggests what caregivers can do before, during, after, and between episodes of problem behaviors.

Behavioral therapy is often based on applied behavior analysis (ABA), a widely accepted approach that tracks a child's progress in improving his or her skills.

Different types of ABA commonly used to treat autism spectrum disorder (ASD) include:

• Positive Behavioral and Support (PBS). PBS aims to figure out why a child does a particular problem behavior. It works to change the environment, teach skills, and make other changes that make a correct behavior more positive for the child. This encourages the child to behave more appropriately.
• Pivotal Response Training (PRT). PRT takes place in the child's everyday environment. Its goal is to improve a few "pivotal" skills, such as motivation and taking initiative to communicate. These help the child to learn many other skills and deal with many situations.
• Early Intensive Behavioral Intervention (EIBI). EIBI provides individualized, behavioral instruction to very young children with ASD. It requires a large time commitment and provides one-on-one or small-group instruction.
• Discrete Trial Teaching (DTT). DTT teaches skills in a controlled, step-by-step way. The teacher uses positive feedback to encourage the child to use new skills.

Keep in mind that other behavioral therapies, beyond ABA, may also be effective for people with ASD. Talk to your health care provider about the best options for your child.

Cognitive behavior therapy focuses on the connection between thoughts, feelings, and behaviors.

Together, the therapist, the person with autism spectrum disorder (ASD), and/or the parents come up with specific goals for the course of therapy. Throughout the sessions, the person with autism learns to identify and change thoughts that lead to problem feelings or behaviors in particular situations.

Cognitive behavior therapy is structured into specific phases of treatment. However, it is also individualized to patients' strengths and weaknesses. Research shows that this therapy helps people with some types of ASD deal with anxiety. It can also help some people with autism cope with social situations and better recognize emotions.

Research shows that early diagnosis of and interventions for autism are more likely to have major long-term positive effects on symptoms and later skills.Autism spectrum disorder (ASD) can sometimes be diagnosed in children before they are 2 years of age. Some children with ASD whose development seems typical up to that point begin to regress just before or sometime during age 2 years.

• Family training
• Speech therapy
• Hearing impairment services
• Physical therapy
• Nutrition services

Early interventions occur at or before preschool age, as early as 2 or 3 years of age. In this period, a young child's brain is still forming, meaning it is more "plastic" or changeable than at older ages. Because of this plasticity, treatments have a better chance of being effective in the longer term. Early interventions not only give children the best start possible, but also the best chance of developing to their full potential. The sooner a child gets help, the greater the chance for learning and progress. In fact, recent guidelines suggest starting an integrated developmental and behavioral intervention as soon as ASD is diagnosed or seriously suspected.

With early intervention, some children with autism make so much progress that they are no longer on the autism spectrum when they are older. Many of the children who later go off the spectrum have some things in common:

• Diagnosis and treatment at younger ages
• A higher intelligence quotient (IQ, a measure of thinking ability) than average for a child with autism
• Better language and motor skills

Goals of Early Intervention

Early intervention programs help children gain the basic skills that they usually learn in the first 2 years of life, such as:

• Physical skills
• Thinking skills
• Communication skills
• Social skills
• Emotional skills

Children with autism are guaranteed free, appropriate public education under the federal laws of Public Law 108-177: Individuals with Disabilities Education Improvement Act (2004), sometimes called "IDEA."

IDEA ensures that children diagnosed with certain disabilities or conditions, including autism spectrum disorder (ASD), get free educational services and educational devices to help them to learn as much as they can.

NICHD-funded researchers have also incorporated communications interventions for children with ASD within the classroom setting, with successful outcomes. Although the specific interventions used in the study are not a guaranteed part of IDEA, components from the program could provide an important evidence-based foundation for future school-based therapies.

IDEA Covers Children and Young Adults

In most states, each child is entitled to these services from age 3 years through high school, or until age 21, whichever comes first. Some states now offer these types of services beyond age 21. You can find the specific rules of IDEA for each state from the National Early Childhood Technical Assistance Center.

Educational Environment

IDEA states that children must be taught in the "least restrictive environment, appropriate for that individual child." This means the teaching environment should:

• Be designed to meet a child's specific needs and skills
• Minimize restrictions on the child's access to typical learning experiences and interactions

Educating people with autism often includes a combination of one-on-one, small group, and regular classroom instruction.

Individualized Education Program (IEP)

The special education team in your child's school will work with you to design an IEP (also called an individualized education plan) for your child. An IEP is a written document that:

• Lists individualized goals for your child
• Specifies the plan for services your child will receive
• Lists the developmental specialists who will work with your child

Qualifying for Special Education

To qualify for access to special education services, the child must be evaluated by the school system and meet specific criteria as outlined by federal and state guidelines. To learn how to have your child assessed for special services, you can:

• Contact a local school principal or special education coordinator

Consult a parents' organization to get information on therapeutic and educational services and how to get these services for a child.

Research shows that many people with autism have difficulty with joint attention, which is the ability to share focus on an object or area with another person. Examples of joint attention skills include following someone else's gaze or pointed finger to look at something.

Joint attention is important to communication and language learning. Joint attention therapy focuses on improving specific skills related to shared attention,such as:

• Pointing
• Showing
• Coordinating looks between a person and an object

Improvements from such treatments can last for years.

Currently, there is no medication that can cure autism spectrum disorder (ASD) or all of its symptoms. But some medications can help treat certain symptoms associated with ASD, especially certain behaviors.

NICHD does not endorse or support the use of any medications not approved by the U.S. Food and Drug Administration (FDA) for treating symptoms of autism or other conditions.

Healthcare providers often use medications to deal with a specific behavior, such as to reduce self-injury or aggression. Minimizing a symptom allows the person with autism to focus on other things, including learning and communication. Research shows that medication is most effective when used in combination with behavioral therapies.

The FDA has approved the use of some antipsychotic drugs, such as risperidone and aripripazole, for treating irritability associated with ASD in children between certain ages.Parents should talk with their child's healthcare providers about any medications for children with ASD.

Other drugs are often used to help improve symptoms of autism, but they are not approved by the FDA for this specific purpose. Some medications on this list are not approved for those younger than 18 years of age. Please consult the FDA for complete information on the following listed medications.

All medications carry risks, some of them serious. Families should work closely with their children's healthcare providers to ensure safe use of any medication.

• Selective serotonin re-uptake inhibitors (SSRIs)
  • This group of antidepressants treats some problems that result from imbalances in the body's chemical systems.
  • SSRIs might reduce the frequency and intensity of repetitive behaviors; decrease anxiety, irritability, tantrums, and aggressive behavior; and improve eye contact.
• Tricyclics
  • These medications are another type of antidepressant used to treat depression and obsessive-compulsive behaviors.
  • These drugs seem to cause more minor side effects than do SSRIs. They are sometimes more effective than SSRIs for treating certain people and certain symptoms.
• Psychoactive or anti-psychotic medications
  • These types of medications affect the brain of the person taking them. The anti-psychotic drug risperidone is approved for reducing irritability in 5-to-16-year-olds with autism.
  • These medications can decrease hyperactivity, reduce stereotyped behaviors, and minimize withdrawal and aggression among people with autism.
• Stimulants
  • This group of medications can help to increase focus and decrease hyperactivity in people with autism. They are particularly helpful for those with mild ASD symptoms.
• Anti-anxiety medications
  • This group of medications can help relieve anxiety and panic disorders, which are often associated with ASD.
• Anticonvulsants
  • These medications treat seizures and seizure disorders, such as epilepsy. (Seizures are attacks of jerking or staring and seeming frozen.)
  • Almost one-third of people with autism symptoms have seizures or seizure disorders.

Autism Speaks, one of the leading autism science and family support organizations in the United States, offers a tool to help parents and caregivers make informed decisions about medication.

Creating a Medication Plan

Healthcare providers usually prescribe a medication on a trial basis to see if it helps. Some medications may make symptoms worse at first or take several weeks to work. Your child's healthcare provider may have to try different dosages or different combinations of medications to find the most effective plan.

Families, caregivers, and healthcare providers need to work together to make sure that the medication plan is safe and that all medications have some benefit.

Things to remember about medication:

• Healthcare providers and families should work together to help ensure safe use of medication.
• Not every medication helps every person with symptoms of autism.
• One person with autism might respond to medications differently than another person with autism or than people who don't have autism.
• Some medications have serious risks involved with their use.

For a variety of reasons, children with autism spectrum disorder (ASD) may not get the nutrition they need for healthy growth and development. Some children with autism will only eat certain foods because of how the foods feel in their mouths. Other times, they might avoid eating foods because they associate them with stomach pain or discomfort. Some children are put on limited diets in hopes of reducing autism symptoms.

It is important that parents and caregivers work with a nutrition specialist—such as a registered dietitian—or health care provider to design a meal plan for a person with autism, especially if they want to try a limited diet. Such providers can help to make sure the child is still getting all the nutrients he or she needs to grow into a healthy adult, even while on the special diet.

For example, many children with ASD are on gluten-free or casein-free diets. (Gluten and casein are types of proteins found in wheat and milk products, respectively.) Available research data do not support the use of a casein-free diet, a gluten-free diet, or a combined gluten-free, casein-free diet as a primary treatment for individuals with ASD.

Good Nutrition Is Important

Research shows that children with autism tend to have thinner bones than children without autism. Restricting access to bone-building foods, such as dairy products, can make it even harder for their bones to grow strong. Working with a health care provider can help ensure that children who are on special diets still get the bone-building and other nutrients they need.

Digestive Problems in ASD

Some people with autism also have digestive problems, such as constipation, abdominal (belly) pain, or vomiting. Some research suggests that digestive problems occur more often in people with autism than in people without autism, but research is still being done on this topic. Working with a health care provider can help ensure that a diet does not make digestive problems worse.

Occupational therapy helps people with autism spectrum disorder (ASD) do everyday tasks by finding ways to work within and make the most of their needs, abilities, and interests.

An occupational therapist might:

• Find a specially designed computer mouse and keyboard to ease communication
• Teach personal care skills such as getting dressed and eating
• Do many of the same types of activities that physical therapists do

In parent-mediated therapy, parents learn therapy techniques from professionals and provide specific therapies to their own child. This approach gives children with autism spectrum disorder (ASD) consistent reinforcement and training throughout the day. Parents can also conduct some therapies with children who are at risk of autism but are too young to be diagnosed.

Several types of therapies can be parent-mediated activities, including:

• Joint attention therapy
• Social communication therapy
• Behavioral therapy

Studies suggest that parent-mediated therapies might be able to improve the child's communication skills and interactions with others. Researchers are still collecting evidence on parent-mediated therapies.

Physical therapy includes activities and exercises that build motor skills and improve strength, posture, and balance.

For example, this type of therapy aims to help a child build muscle control and strength so that he or she can play more easily with other children.

Problems with movement are common in autism spectrum disorder (ASD), and many children with autism receive physical therapy. However, there is not yet solid evidence that particular therapies can improve movement skills in those with autism.

Social skills training teaches children the skills they need to interact with others. It includes repeating and reinforcing certain desired behaviors.

The Children's Friendship Training intervention, for instance, helps elementary school-age children improve several social skills:

• Conversation
• Handling teasing
• Being a good sport
• Showing good host behavior during play dates

There are many social skills training programs throughout the United States.

Speech-language therapy can help people with autism spectrum disorder (ASD) improve their abilities to communicate and interact with others.

Verbal Skills

This type of therapy can help some people improve their spoken or verbal skills, such as:

• Correctly naming people and things
• Better explaining feelings and emotions
• Using words and sentences better
• Improving the rate and rhythm of speech

Nonverbal Communication

Speech-language therapy can also teach nonverbal communication skills, such as:

• Using hand signals or sign language
• Using picture symbols to communicate (Picture Exchange Communication System)

Speech-language therapy activities can also include ways to improve social skills and social behaviors. For example, a child might learn how to make eye contact or to stand at a comfortable distance from another person. These skills make it a little easier to interact with others.

Products or treatments claiming to cure autism are deceptive and misleading, because there is no cure for autism. The same is true of many products claiming to “treat” autism or autism-related symptoms. Some may carry significant health risks.

The Food and Drug Administration (FDA) plays an important role in warning companies against making improper claims about their products’ intended use as a treatment or cure for autism or autism-related symptoms.

About Autism

According to the Centers for Disease Control and Prevention (CDC), about 1in 68 children has been identified with an autism spectrum disorder (ASD). Autism spans all racial, ethnic and socioeconomic groups, and is about 4 times more common among boys (1 in 42) than among girls (1 in189).

The National Institutes of Health (NIH) describe children with autism as having difficulties with social interaction, displaying problems with verbal and nonverbal communication, exhibiting repetitive behaviors and having narrow, obsessive interests. These behaviors can range in impact from mild to disabling. Some children with ASD are very high functioning, while others may have significant delays in cognition and development.

Because there can be overlap in symptoms between ASD and other disorders, such as attention deficit hyperactivity disorder (ADHD), it's important that the treatment focus on a person's specific needs. Existing behavioral interventions are designed to address specific symptoms, particularly communication issues, and can bring about improvement. Early intervention is key.

There are FDA-approved drugs that can help some people manage related symptoms of ASD. For example, the FDA has approved the use of antipsychotics such as risperidone (for patients ages 5 to 16) and aripripazole (for patients ages 6 to 17) to treat irritability associated with autistic disorder. Before using any behavioral intervention or drug therapy that claims to treat or cure autism, you should check with your health care professional.

FDA Cracks Down on False Claims

The Food and Drug Administration has warned and/or taken action against a number of companies that have made improper claims about their products’ intended use as a treatment or cure for autism or autism-related symptoms. Some of these so-called therapies carry significant health risks. For example,

• “Chelation Therapies.” These products claim to cleanse the body of toxic chemicals and heavy metals by binding to them and “removing” them from circulation. They come in a number of forms, including sprays, suppositories, capsules, liquid drops and clay baths. FDA-approved chelating agents are approved for specific uses that do not include the treatment or cure of autism, such as the treatment of lead poisoning and iron overload, and are available by prescription only. FDA-approved prescription chelation therapy products should only be used under professional supervision. Chelating important minerals needed by the body can lead to serious and life-threatening outcomes.
• Hyperbaric Oxygen Therapy. This involves breathing oxygen in a pressurized chamber and has been cleared by FDA only for certain medical uses, such as treating decompression sickness suffered by divers.
• Detoxifying Clay Baths. Added to bath water, these products claim to draw out chemical toxins, pollutants and heavy metals from the body. They are improperly advertised as offering “dramatic improvement” for autism symptoms.
• Various products, including raw camel milk, MMS (chlorine dioxide) and essential oils. These products have been marketed as a treatment for autism or autism-related symptoms, but have not been proven safe and effective for these advertised uses.

FDA some quick tips to help you identify false or misleading claims.

• Be suspicious of products that claim to treat a wide range of diseases.
• Personal testimonials are no substitute for scientific evidence.
• Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”
• So-called “miracle cures,” which claim scientific breakthroughs or contain secret ingredients, are likely a hoax.

If you have a question about treatment, talk to a health care provider who specializes in caring for people with ASD.