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An Early Start for Your Child with Autism

Using Everyday Activities to Help Kids Connect, Communicate, and Learn

The Guilford Press

Setting Up Your Child's Early Intervention Program

Carmen and Roberto received a diagnosis of autism for their 3-year-old, Teresa, last week. They spent a whole day at a clinic where Teresa saw person after person who asked her to play with toys, draw, swing on a swing, and do all kinds of other things. Carmen and Roberto were surprised at how much Teresa did for the doctors. These people really seemed to understand Teresa and know just what to do to encourage her to play. Teresa enjoyed herself and did some things for the doctors that her parents had never seen. They were proud of her and glad that it had gone so well.

The doctors were kind and friendly to Carmen and Roberto. They spent a lot of time with them, asking them all sorts of questions. At the end, the parents met with the psychologist on the team, Dr. Avila, who spoke both Spanish and English. She said that Teresa had some talents and abilities—she was already beginning to read! But she was also having problems learning to communicate and play. Dr. Avila said that Teresa had autism. This was the reason for her lack of speech, her odd finger movements, her big tantrums, and other problems, too. The doctor was so sure about this. That helped Carmen and Roberto. Their daughter wasn't stubborn or spoiled. She had autism, a biological condition. The diagnosis explained everything about her. And she was smart.

Dr. Avila reassured Carmen and Roberto that they had not caused Teresa's autism, nor could they have prevented it. However, they could help Teresa a great deal by finding her a good treatment program. The doctor also said that autism was something that did not go away by itself. That was hard to hear, but also, in a way, a kind of relief. Carmen and Roberto now had a name for what was wrong—a diagnosis, a way to explain Teresa.

Dr. Avila gave them phone numbers and names of people to call, as well as handouts to read (even some in Spanish for the grandmas), a list of books and websites, a fact sheet about autism, and names of parent groups. Carmen and Roberto went home in a sea of worry, grief, and questions. For a few days they were just numb and couldn't talk about it or even think clearly about anything. They went through the next few days like robots—going through the motions of everything they had to do at work and at home, but feeling numb and sad.

On the weekend, though, over breakfast, Carmen started to talk to Roberto about it all. So many different feelings were going through her at once. She was desperately worried about Teresa, about her future, about what to do, about how to help her do well. She wanted to start finding treatments as the doctor had advised, but she didn't know where to begin. Roberto listened closely to Carmen as she expressed her feelings. Carmen had words for the thoughts and feelings that he was having, too. They were a close couple. He reached out and squeezed her hand. "We'll get through this," he said. "We'll pray, and we'll work with her, and we'll get through this." Carmen squeezed his hand back, wiped away a few tears, and felt grateful for her husband—he listened, he joined, he was there with her. She was not alone. "But what should we do now?" she asked. "Who should we call first?" There was so much information on the sheet the doctor had given them; she had no idea where to start.

The news about autism probably opened up a huge new set of feelings and thoughts for you, as it did for Carmen and Roberto, including those involved in finding and beginning treatment for your child. On the one hand, you may feel a sense of urgency to get started. On the other hand, you may find yourself somewhat overwhelmed and even a little reluctant to start the process. The amount of new information and new terminology can be daunting. The numerous phone calls and appointments can make the process seem never-ending. Perhaps you even feel that if you can put off seeking help for a little longer, things will get better on their own. All of these feelings have been shared by countless parents and other family members who have stood in your shoes. We hope to make the process a little easier for you by providing straight-forward information and techniques that can set you on the right path.

Starting in Chapter 4, we describe concrete ways to help your child increase his social and emotional interactions, communication, and play during your typical daily routines, so that you can increase your child's learning opportunities throughout the day. These parent-delivered strategies can be used together with other interventions for your child, which may involve a number of different people. In this first chapter, we offer information and tips for finding and pulling together the essential ingredients of a successful early intervention program for your child.

GETTING STARTED: KNOWLEDGE IS POWER

At first, the new terms, the difficulty in finding good treatment, and the uncertainty that lies ahead make many parents feel like getting into bed and hiding under the covers. Fortunately, this feeling is soon overshadowed by the determination to find out what is best for their child and to find the best intervention available. But getting these answers can be difficult. There is so much out there—so many different opinions and so much disagreement among people.

A recent survey of thousands of parents found that a large majority of parents (81%!) turn to the Internet to gain an understanding of and help for ASD. The Internet allows parents across the globe to access an enormous amount of information, much of which is valuable. However, the information found on the web can also be misleading and unreliable. As you read and listen to others, keep these questions in mind:

• Who is the author? Does the author have the background and expertise needed to provide reliable, authoritative information?

• Has the information been tested thoroughly by research? Has it been published in scientific journals?

• What is the date of the information? Is it current?

• Is the website trying to sell you something? Products, assessments, treatments?

• Does the website claim to have a miraculous "cure" for ASD?

• Does the site seem biased? Does it discuss different points of view or only one?

Be skeptical! If you don't feel comfortable with your answers to any of these questions, question the truth of the information you are reading on the Internet.

To make it easier to sort through the information and options presented on the web, one group—Autism Speaks, the world's largest autism science and advocacy organization—brought parents and professionals together to create a set of tools to help parents walk through those first overwhelming days after diagnosis.

As a parent of a young child with ASD, you will find a lot of useful information on the Autism Speaks website, under "Family Services." If you still have questions about whether your child has ASD or what the specific symptoms of ASD look like, you can check out the ASD Video Glossary at www.autismspeaks.org/what-autism/video-glossary. The glossary contains more than a hundred video clips of children's behavior, illustrating the sometimes subtle differences between typical and atypical behavior. The ASD Video Glossary can help you learn more about your child's symptoms of ASD.

A second important tool for you is the "100 Day Kit." You can download the kit for free at www.autismspeaks.org/family-services/tool-kits/100-day-kit. This kit, which is available in Spanish, gives information on ASD diagnosis and causes, your child's educational rights, different therapies and treatments, and 10 things your child wishes you knew, as well as safety tips, useful forms, and a glossary. The kit will provide you with a detailed plan for what to do in the next 100 days. Knowledge is power, and the 100 Day Kit will help you feel better prepared for the start of your journey down the new road that has opened up in front of you as a parent of a child with ASD.

The strategies that you will learn starting in Chapter 4 will help you work with your child at home right now, while you are waiting for intervention to begin. They will continue to be helpful once your child is enrolled in an intervention program. That is, they will ensure that your child is learning not only while with teachers and therapists, but also throughout the day-to-day moments with you. You are, after all, your child's most valuable teacher—just as parents of children without an ASD diagnosis are—because you know your child best and you're the person with whom your child spends the most time. Those daily activities with you are the most important and most frequent learning opportunities your child has, and you are there and ready to make the most of them.

FINDING THE BEST INTERVENTION PROGRAM

In 2001, the National Research Council, an organization that advises the U.S. Congress on policy, made a set of recommendations about best practices for early intervention with young children with ASD. These straightforward recommendations can serve as a basic guide and yardstick by which to assess the effectiveness of an intervention program you're considering. The criteria are as follows:

[check] Intervention should begin as soon as possible.

[check] The intervention program should be individualized for each child, taking into account each child's unique characteristics, strengths, and challenges.

[check] The intervention program should be designed and overseen by a trained, professional, interdisciplinary team.

[check] A curriculum that focuses on the specific areas of challenges in ASD should be used.

[check] The program should provide for ongoing data collection on the progress the child is making in each skill area, and adjustments to the program should be made when progress is not evident.

[check] The child should be actively engaged in the intervention activities and should receive at least 25 hours of structured intervention each week.

[check] Parents should be closely involved in the intervention, as well as in setting goals and priorities, and should be taught how to implement the intervention strategies at home.

We would add another criterion to this list: The intervention provided for your child should be based on evidence-based practices (EBPs). You may run into this phrase often as you read about autism interventions. It means that the intervention has been tested in scientific studies and published in scientific journals, and that the results showed those intervention practices to be more helpful for young children with ASD than no intervention. With all the claims and all the hype about autism treatment these days, you will want to be sure that your child is receiving interventions that have been tested and found to be effective.

How will you know? You can ask the providers if their intervention is based on EBPs, and if you want, you can ask them to share with you the research articles that demonstrated its success. You can find trustworthy information about EBPs on the National Standards Project website (www.nationalautismcenter.org/affiliates) and on the website for the National Professional Development Center on ASD (http://autismpdc.fpg.unc.edu).

Receiving appropriate early intervention based on best practices is not just a goal. It is a legal right of your child's, thanks to a law called the Individuals with Disabilities Education Improvement Act (IDEA), which was enacted in 1975 and revised in 2004. This law guarantees the rights of all children, including those with ASD, to a free and appropriate education that meets their unique and individual needs. This means your child with ASD is eligible for free education that addresses her specific needs (even as a toddler).

How do you find an early intervention provider? The professional who provided you with the diagnosis may also have provided you with a name and phone number to call to begin the process of starting early intervention services. If this did not happen, your child's doctor may well know the agency and phone number to call. Another route is to call your school district's special education department, say your child has just received a diagnosis of ASD, and ask whom you should speak to. You can also find information on how to find and access early intervention services in your state on the Autism Speaks website (www.autismspeaks.org/family-services/resource-guide) and the Autism Society's website (www.autism-society.org).

A good early intervention program can be provided in different ways:

• If your child is under age 3, you will work with the early intervention provider to develop an individualized family service plan (IFSP). This is a document that you and others will write together. It will describe your child's specific intervention needs and goals, and the types of services your child and family will receive to reach those goals.

• If your child is 3 years old or older, he will receive an evaluation, and you and the preschool services agency staff members will develop an individualized education program (IEP) for your child, usually under the direction of your local school district. Your child's intervention will move from "early intervention" to "preschool" services at age 3, even if you started out with an IFSP.

Choosing a Birth-to-3 Program or Preschool Program

Because the needs of each child with ASD are unique, there are many ways to construct an early intervention program that can help your child, and many types of intervention models to draw from. Some children receive all of their services at a specialized clinic- or school-based program, whereas others receive most of their interventions from people who work with the children at home. It is common for young children with autism to receive their intervention from a combination of school-, clinic-, and/or home-based intervention programs. In some places, services are delivered by people working for the public agency. In other places, the public agency contracts with private groups to serve children.

As we have said above, high-quality programs use EBPs. Most EBPs have come from the field of applied behavior analysis (ABA). What is ABA? ABA is the use of teaching practices that come from the scientific study of learning to teach or change behavior. The principles of ABA can be used to teach new skills, shape existing behaviors into new ones, and reduce the frequency of problem behaviors. Later in this book (Chapter 9), we describe the principles of ABA in more detail. For now, the important thing is to look for early intervention programs that use EBPs in their approach. As noted earlier, you can ask any early intervention provider directly whether the program uses EBPs in its teaching approach. If the answer is no, look for additional options.

Providers of early intervention programs and services may include early educators, speech–language therapists, behavior analysts, occupational therapists, or other professionals, along with educational or therapy assistants. Although the amount of intervention for preschoolers recommended by the National Research Council (see the checklist on page 13) is 25 hours per week, we don't know what the best number of hours is for children under 3, and public services in many places may provide only a few hours per week of intervention. You can use the intervention strategies described later in this book, and those you learn from your intervention team, at home to increase the number of hours of high-quality learning experiences your child receives. This will also help your child learn to bring (generalize) the skills learned in other settings into daily life at home and in your family activities.

If you have a choice of intervention programs, try to visit and observe different programs in action, meet with the director and teachers, and talk with other parents of children participating in the program. As you observe the program and talk with the teachers and parents, imagine your child in this program. Is the intervention approach based on EBPs? Does it seem right for your child? Is this the kind of approach you think will work best for your child? Programs differ in their degree of structure and routine, how they work with parents, how they teach language, how quiet or noisy they are, whether they are delivered at home or in a group, and so on. How do these qualities match your child's individual personality, learning style, and abilities? How do they match your preferences, values, and expectations for how others should interact with your child? The National Research Council recommendations mentioned earlier can be broken down into more specific criteria that you can use to evaluate an early intervention program. You may not be able to determine whether all of the criteria in the checklists in the box on pages 18–19 are being met without delving into a lot of detail with the providers, but you can get a fairly good idea of whether many of them are being met by observing the program closely and asking questions as they arise.

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Excerpted from An Early Start for Your Child with Autism by Sally J. Rogers, Geraldine Dawson, Laurie A. Vismara. Copyright © 2012 The Guilford Press. Excerpted by permission of The Guilford Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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