Autism spectrum disorders (ASDs)

If your child has just been diagnosed with an autism spectrum disorder, you may feel like you’ve entered a maze, trying to find the best therapies to help your child communicate and express himself, have meaningful interactions with others, and learn and develop the skills he needs.

We want you to know you’re not alone: Our team at Children’s Hospital Boston makes specific, highly individualized recommendations for behavioral, educational and medical therapies for your child. Because research indicates that intensive therapies are often enormously helpful to children with ASDs, we are dedicated to helping your family find the best approaches for your child—both when he’s first diagnosed, and as he grows.

When making our recommendations, we don’t just focus on your child’s challenges: We also outline skills he’s doing well with. That’s important information for your child’s educational providers, because they’re often able to use your child’s strengths to help him learn and overcome his challenges.

For instance, some children are very visual learners—they may not have very good language abilities and don’t understand if you explain something verbally, whereas using a picture can help them instantly grasp a new idea. Other children may not make good eye contact, but may be able to listen well and understand spoken requests and explanations.

Behavioral therapies and teaching approaches for children with ASDs

Behavioral therapies are used to help children with ASDs build language, social and play skills. There are a variety of approaches, but experts agree that programs should have several important features:

• Appropriate therapies should start as early as possible.
• Therapies should be intensive and highly structured, with highly trained, specialized therapists working with children one-on-one or in very small groups.
• Families should be actively involved; there should be support and training for your family.
• The effectiveness of your child’s therapy plan should be evaluated frequently, so that changes can be made if needed.

There are a number of specific approaches. For example:

Applied behavioral analysis (ABA) is frequently used for children with ASDs. It involves identifying the behaviors that need to be reduced and the ones that need to be built. Your child’s therapist breaks down new skills into small, incremental steps, so that over time your child can build more complex skills. The approach involves practicing skills repeatedly and creating positive reinforcements for your child. The program is highly individualized based on your child’s interests, abilities and behavior. ABA is a well-studied therapy, and research shows that it can be very effective in helping children with ASDs.

DIR®/Floortime™ (Developmental, Individual difference, Relationship-based) is another commonly used approach. This therapy is built specifically around interactions between the therapist and your child, with the aim of improving your child’s social skills. Other relationship-based therapies include SCERTS® (Social Communication, Emotional Regulation and Transactional Supports) and RDI (Relationship Development Intervention).

There are also a number of strategies for teaching children with ASDs in the “least restrictive environment”—in mainstream settings rather than in separate classes. For example, components of a program called TEACCH (Treatment and Education of Autistic and Communication related handicapped CHildren) can be very helpful in helping a child succeed in a mainstream classroom. These strategies include using visual schedules along with a structured and predictable routine.

Generally, therapists use a combination of approaches—such as the structured approach of ABA along with the interactive play methods of Floortime—in order to address your child’s unique social, behavioral, communication and academic needs. The goal is to develop a program that will help your child reach his full potential.

Tools for communication and movement

Your child’s treatment program may also involve a number of other components:

• Speech-language therapy can help your child understand language and use it to express himself.
• Total communication interventions are a type of speech therapy that can help your child use any possible means of communication—including vocalizations, pictures, gestures and sign language.
• Occupational and physical therapy may develop your child’s skills in using his hands and other parts of his body and help your child deal with sensory inputs from his environment.

At Children’s, your child may get occupational and physical therapy in the Occupational Therapy Service and Physical Therapy Department.

Communication therapies are offered in the Children’s Center for Communication Enhancement, which has a wealth of experience in working with children who have ASDs. This department includes:

• Autism Language Program
• Augmentative Communication Program

Treating associated symptoms

If your child has other conditions associated with his ASD diagnosis, such as hyperactivity, attention problems, anxiety or seizures, his ASD team may work with professionals in a variety of departments at Children’s who are experienced in providing care for these other conditions. These include specialists in:

• Psychiatry, in our Neurodevelopmental Medicine Clinic
• Neurology
• Developmental Medicine

Treating these problems may help your child with some of the symptoms of his ASD, as well. Often, these treatments help by managing symptoms (such as hyperactivity, anxiety or anger) that are getting in the way of a child’s ability to make progress in behavioral therapy or to sustain social interactions.

Medications are often used in treating these associated problems. So while there’s not currently a medication to treat the core symptoms of ASDs, medications are often very effective in treating related symptoms. That, in turn, can make behavioral treatments for ASDs much for effective for your child.

Your child’s education

Most of the educational therapies used to address the core symptoms of ASDs are provided through programs run by your state and your local school system.

Children under age 3 who have ASDs or other developmental challenges are eligible to receive developmental therapy through state-run, federally mandated programs. These programs have different names in each state. In Massachusetts, the program is called Early Intervention. It, along with additional Specialty Services, is administered by the Massachusetts Department of Public Health. The services your child receives are guided by an Individualized Family Service Plan (IFSP).

Once your child turns 3, special education services are provided through your local public school system. These services are guided by an Individualized Education Plan (IEP) written for your child.

Your local school system can provide services even before your child is old enough to start kindergarten. These are provided through specialized preschool programs, and sometimes through home-based therapies.

There’s no one educational approach that’s best for every child. Your child may need to learn in a special classroom, or he may be part of a regular class and get special assistance there. Different children will also need different related therapies, such as occupational or behavioral therapies.

To learn more about how to access educational services in your community, see the resources listed in Coping and support.

Our team at Children’s includes ASD resource specialists and will provide specific recommendations for educational strategies and therapies for your child, and guidance on how to put that plan into action.

Ongoing care from your child’s ASD team

As your child grows up, his abilities and the therapies that he needs will probably change. So we’ve shifted our focus to not only providing your child’s initial assessment, but following him closely as he grows us. This ongoing relationship between our team at Children’s and your family also provides opportunities for you to discuss with us any questions that you have as time goes on.

Our team at Children’s will see your child periodically as he grows up to:

• see how your child is developing and how his therapies are working for him
• make new recommendations for education and therapy
• keep an eye out for any related medical concerns
• discuss any questions and concerns you have

Our goal is to support you and your child so that he can gain the skills he needs to have an active and happy life.

Coping and support

The diagnosis of an autism spectrum disorder can feel overwhelming, and you probably have a lot of questions on your mind. Why did this happen to my child? What do we do now?

Our team at Children’s Hospital Boston is dedicated to supporting you as you cope with your child’s diagnosis and navigate his care. We’ll make specific recommendations for therapy plans for your child and provide guidance for accessing those therapies in your community.

This list outlines some of our resources at Children’s and in the wider community:

Resources at Children’s

Resource specialists, social workers and mental health professionals: If your child is diagnosed with an ASD at Children’s, a resource specialist connects with your family to help you access resources in your community and put into action the plan that your child’s medical team has recommended. This isn’t just a one-time contact, but an ongoing relationship to support your family as your child grows up and his needs change.

Social workers and mental health professionals at Children’s have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child’s diagnosis and the stresses that can come as you deal with his condition and the services he needs. Social workers can also help with issues such as dealing with financial difficulties and arranging transportation.

Parent to parent: Want to talk with someone else whose child has an autism spectrum disorder? We can often put you in touch with other families who have been down a similar road and can share their experience. Several Children’s programs that provide care for children with ASDs also offer a variety of family support groups. Your child’s care team can tell you about any groups that may be helpful to you.

On the Children’s For Patients and Families site, you can read all about:

• getting to Children’s
• accommodations
• navigating the hospital experience
• resources that are available to your family

Resources in Massachusetts and New England

Children’s is a member of the Autism Consortium, a collaboration among hospitals and research institutions in the Boston area. Their website contains a lot of material that may be helpful to you, including a parent information packet filled with practical information. The information is particularly geared toward families in Massachusetts and elsewhere in New England.

Autism Support Centers throughout Massachusetts provide support and information on health care, education, community agencies, funding sources and other services. These groups often also offer workshops for parents, family support groups and specialized programs for children and young adults. You can find the Autism Support Centers on the Autism Consortium Family Resource Database.

These resources on education and Early Intervention are helpful for families who live in Massachusetts:

• The Federation for Children with Special Needs provides an extensive manual on education for children with special needs, “A Parent’s Guide to Special Education” (pdf), at their website.
• These websites give information on Early Intervention in Massachusetts, a service available to families of children with developmental difficulties between birth and age 3:
  • The Massachusetts Office of Health and Human Services provides detailed information.
  • Information is also available at MassResources.org.
  • Family Ties of Massachusetts manages a listing of Early Intervention programs and other resources around the state.

If you live outside of Massachusetts, our team can direct you to helpful resources.

National organizations and agencies

Autism Speaks is an organization that offers a wide range of information and support services. Their 100 Day Kit is a comprehensive guide aimed at giving your family the information you need immediately after your child is diagnosed with an autism spectrum disorder.

The Autism Society of America offers information and support to families through the national organization and their regional chapters.

The Centers for Disease Control and Prevention (CDC) provides extensive information about ASDs at their website.

The links listed here offer an enormous amount of information, and we hope they’re helpful to you and your family. We know, too, that all of this can often feel like too much information, and it can be hard to know where to begin. We encourage you not to feel like you have to read everything at once, but to look specifically at the resources that are most helpful for you at the moment, and to return to others later, when you need them. Our team at Children’s can also help guide you to the resources that will be most helpful to you in your particular situation.