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?

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