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From "Come Here!" to "Go Play!" Life with an Early Intervention Program
by John (Parent of A Child with an Autism Spectrum Disorder)



What will it be like if you decide to pursue a home program of intensive behavioral intervention for your child? My wife and I have run a home program for our son for two years, and I can at least offer you a description of what happens in our home. And further, I’ll try to answer the question, Is it worth it?

Our Program
We run a program for our five-year-old son, to help him overcome his autism spectrum disorder. He was diagnosed three years ago, at age 2˝.
The program is done in our home by a team of three people: my wife, Cindy, is the lead therapist/supervisor, and there are two therapy associates, who are undergraduate students. Cindy and the therapists receive on-going training from an early intervention consultant who visits periodically.

The program uses intensive 1-on-1 methods to teach language, social and other skills. Our program is based on the methodologies of the UCLA Clinic for the Behavioral Treatment of Children, where Ivar Lovaas, Ph.D., is director. Dr. Lovaas has been working with young autistic children since the 1960s. The methods and curriculum for my son’s program come to us from the Early Childhood Intervention Center (ECIC) in New York, an agency run by two former Lovaas Clinic supervisors. Within the methods and curriculum used by ECIC, the individual skill programs and instruction techniques for my son's program are tailored to his particular learning style, strengths and deficits.

Skill Building
Every skill that is to be taught to our son is broken down into very small steps that he can master. We teach him by presenting him with a request or cue, and rewarding his response. If the response is correct, he is rewarded, which reinforces the behavior. Eventually, he gives the response even without the reward (for example, by using the spoken word "tree," even though a reward is no longer given for correctly labeling the tree).

So, the basic rhythm of the teaching is (1) cue from therapist, (2) response from child, and (3) consequence (reward or lack of reward). This routine of cue-response-consequence is called a discrete trial. Because of its consistent, predictable format, discrete-trial teaching has been shown to work well with children with autism or PDD.

In our program, the therapist (my wife or one of our trained college students) sits with my son at a small table. A sitting lasts about 2 to 5 minutes, and only one program is done during a sitting. The program might be matching identical objects, imitating another person's body movements, verbal imitation practice, etc. These were the early programs. Later, more advanced skills were taught, such as counting, yes/no, imitative play, and circle time.

"It's like building a pyramid piece by piece, and it's a lot of work"
(Dr. Lovaas, Washington Post, 1.24.95)

Skills are introduced so that each new program builds developmentally upon previous ones. For example, my son was taught to match an object to an identical object, then to choose that object from a variety of objects, then to say the word and label the object, then to group it in a category (all cars, all animals, etc.), and eventually to describe the object's attributes (color, shape, etc.). Each new program built off the previous program.

The length of the sitting, and even the number of trials during a given period, will vary with the child and program. In my son's program, there are typically 6-10 discrete trials in a sitting. If my son does not give the correct response, the therapist will use a prompt to help him learn the correct response, and then fade the prompt as quickly as possible, to avoid "prompt dependence." After 2-5 minutes of discrete trials, the therapist says "Go play!"

At this point, the therapist quickly writes down a score that denotes how well my son did in the trial, for example, 6 correct, 1 no response, 1 incorrect response. Collecting performance data is done to reveal the subtle signs of progress and of stalling. When we see stalling, Cindy and our ECIC consultant work out a different approach for the problem area.

When I first heard about collecting data on children’s performance, I thought the idea sounded awful, but I quickly saw that it can be done quickly and respectfully. And the data is truly useful: it shows how my son is learning. It's like recording all the expenditures that you make in a month, so that you can make a good budget. The data helps you see the positive patterns and the undesirable patterns.
For a typical child, these methods would be unnaturally "stiff" and artificial, but for autistic children, these very repetitive, predictable interactions with the therapist are actually reassuring. It put my son in a comfort zone in which he could begin to learn. Especially at the beginning of his program, my son needed a sort of extreme consistency to learn.

Before long, skills are learned. These "mastered skills" are then generalized during the rest of the day—in the back yard, at McDonald’s, on the playground, etc. For example, at breakfast time, my daughter might hold up a doughnut and ask "What shape?" My son, who mastered shapes, responds, "Circle," and receives a tasty reward.

In the first many months, our son's program built foundational skills, such as sitting in a chair, paying attention, and recognizing the same attributes that typically developing children do (shape, color, size, function, etc.). Other early skills included speech articulation, imitating behavior, responding to spoken commands, and appropriate toy play. These and later skills, including self-care skills, are designed to help our son to interact with the world and make peer social connections. The overall goal is for him to eventually "catch up" to his peers and begin to learn from them.

Self-care skills were introduced in a way that built upon the early compliance and imitation skills. My son's program taught him dressing, washing, using the potty, as well as all the skills needed to participate in a classroom (sitting attentively, following directions, taking turns, etc.). An ultimate goal was to prepare him to participate as fully as possible in his home life and school life.
After a year of discrete-trial teaching at home, he had enough skills to participate successfully in a classroom, so we enrolled him in preschool with an aide. (Due to the lack of available trained people, my wife had to serve as his aide.) Outside of preschool, we continued with discrete-trial teaching; however, the teaching was done less at the table and more in natural settings, depending upon the particular skills he had mastered.

At this writing (Spring 1998), he is finishing a good year at preschool, where his aide was required less and less as the year progressed. For next year, a teaching plan is being worked out based on his levels of ability.
 
Our Program’s Structure
Overall training, curriculum and supervision for the program is provided by Sheri Jacobowitz, our supervisor/workshop trainer from the Building Blocks Children’s Group in New York. Sheri in turn is supervised by the Building Blocks director, Michael Wolff, who is a former Lovaas Clinic supervisor. (5/98 Note: Building Blocks is a new organization created from the former Early Childhood Intervention Center [ECIC]. The other ECIC offspring is the Redwood Learning Center.)

The methods and the curriculum of our program are important, but the people involved in the program are equally critical. Sheri, our supervisor, is a good teacher for us as well as a good therapist with my son. In teaching us how to do discrete trials, she is firm but patient, and always encouraging. She always demonstrates exactly what she is teaching.

Daily management, materials preparation, training, and supervision of the program is conducted by my wife, Cindy, without whom there would be no program. Running the program day to day is a full-time job for her. I work 1-on-1 with our son for an hour on Saturday and Sunday mornings, and I help with the program as I can during the week.

Twenty-six hours per week of discrete-trial therapy done in our home by Cindy and the two undergraduates we recruited. The therapists are trained at our workshops, and are then supervised day to day by Cindy. Each therapist does at least 2 sessions per week of 2 hours each. The therapy team has twice-monthly staff meetings to go over new programs and to observe and give feedback to each other.

The workshops: The workshops are one or two days long, from 9 to 4, with a 1-hour lunch break. Each workshop focuses on my son's current programs and those in the near future. The workshops are presented to the therapy team to teach them how to deliver the therapy correctly and to give them practice. During the workshop, every therapist works directly with my son and receives feedback and help from Sheri, our workshop trainer/supervisor.

Before the workshop is over, Sheri and Cindy go over the programs for the next three months. Between workshops, we consult with Sheri on an as-needed basis using videotapes, e-mail questions, and telephone conversations. At the six-week mark, we send Sheri a 30-minute videotape showing "live" drills of each current program and each therapist. Sheri reviews the tape and critiques the therapy in detail in a follow-up phone consultation.

In addition, my son went to preschool two mornings per week, as well as speech therapy twice a week, and occupational therapy once per week.

Daily Life
I asked my wife, Cindy, what it’s like to be the person in charge of the program day to day. It is a job that she’s learned over the past few years. "It’s like learning how to be a parent," she said. "It comes along one day at a time, and you have to grow and stretch with it. The hardest thing I find is that the rest of your life doesn’t stop needing you." There’s a household and family to keep going, including our other child, a seven-year-old NT daughter.

Cindy carries out the programs we receive at the quarterly workshops. She schedules the therapists and prepares the materials and the reinforcers, and she communicates information among the therapists.

Some parts of the job are, fortunately, reinforcing. "Being in charge of everything has some wonderful sides," she said. "I see everything happen, and I get to see him succeed. And when he has learned something new and he looks up at me with a grin, every minute of work is worth it."
Is It Really Worth It?

At this point, I’ll bet you’re thinking, It sounds like a big undertaking. Is it really worth it? For myself and my family, the answer is yes. Our little guy is so much better, and nothing else we've ever tried has been as effective.

When we started the home program, we didn't know what the end result would be. We wanted to give behavioral intervention a try, since it looked promising. My wife and I figured, if it was effective in helping him 25% or 50%—whatever, it'd be worthwhile, because autism is such a difficult condition.
Two years ago, our son had few words, but a lot of tantrums. He would scream and throw things. We stayed home a lot because we were afraid to take him anywhere. Now, his program has taught him compliance, which improved his behavior, and the program has also given him speech practice and improved his language comprehension. He can use more words effectively, and hardly ever tantrums. When he wants something, he will come up to me and say, "I want help, please." Life around this house is a lot better. And when I hear him say, "My daddy is John," my heart sings.

Now, I don't want to gloss over the hard parts. It can be a tough, discouraging job sometimes—isolating and lonely, too, since most people we know are unfamiliar with autism and behavioral programs. Running the home program is an all-consuming effort for my wife and I, and our son and daughter. It is our life, for right now. Cindy, as the day-to-day supervisor, oversees the 1-on-1 therapists, prepares materials, does the paperwork, and works with our son herself. It’s a full-time job without pay. And ultimately, we don’t know how far our son will progress out of the autism spectrum—there are no guarantees.

All that said, we have no regrets. Autism is a very serious disorder, so we had the motivation to try running a home program. With our consultant’s guidance, we tried it, our son changed a lot for the better, and we’re very grateful.
And what about our son? How does he like it? When my wife first started to do the therapy, she was afraid that it would be too hard on our little guy, too intensive. But we thought we'd give it a try and stop if it looked like a bad thing. What we feared didn't happen. Actually, we saw him become more attentive and more aware of us. After a session of therapy (with a lot of tantruming, in those early days), our son would surprise us by coming over to sit next to us. The program has made him much more affectionate and socially tuned in.

So, we see progress, and that keeps us going. Just recently, my wife and I have begun to feel a little hopeful overall, a little less panicked. Who knows what the future will hold? I think it holds an easier life for my son. And someday, there'll be time for Cindy and I to go play.
Most of this material was excerpted from my website, "A Maine Family’s Early Intervention Program for Autism / PDD." Come and visit: http://www.gwi.net/goplay


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