A Maine Family's Early Intervention Program for Autism - PDD
A website for parents
The Early Intervention Program We Ran In Our Home
What was the intervention program?
Describe a therapy session
Who provided the training and supervision?
What is the intervention program?
We ran a program for our son in the 1990s when he was between 3 and 8 years old (and in some ways, traces of that program continue to this day). The program was based in our home and carried out by a team consisting of my wife, Cindy, and a few associate therapists, who are mostly students from a local college. Each person worked 1-on-1 with my son throughout the week. Cindy and the therapists received ongoing training from an early intervention consultant who visited periodically.
The program used intensive 1-on-1 methods to teach language, social and other skills. It gave us a positive, successful way to teach our son how to communicate, how to relate socially, and how to learn.
These 1-on-1 teaching methods are based in applied behavior analysis (ABA), a field of behavioral psychology. A program like my son's is called a "behavioral program" because of its basis in behavioral psychology, not because it is focused on teaching the child to behave! (Actually, the child's behavior is likely to improve as he or she learns better communication and other skills that replace tantrums.)
How does the treatment work?
An ABA program works on the premise that when reinforcing consequences follow a child's response, the child is likely to give that response again, so learning can be shaped by reinforcement.
Every skill that is to be taught to the child is broken down into very small steps that he or she can master. Each step is taught by presenting the child with a request or cue, and rewarding his or her response. If the response is correct, the child is rewarded, which reinforces the behavior. Eventually, the child will give 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 worked well with my son.
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. Only one program is done during a sitting. The program might be matching identical objects, imitating another person's body movements, learning to play with toys, etc. These are the early skills. Later, more advanced skills are taught, such as participating in a conversation, pretending and storytelling.
"It's like building a pyramid piece
by piece, and it's a lot of work."
(Dr. Lovaas, Washington Post, 1/24/95)
The underlying curriculum (the order in which the skills are taught) is designed so that each program flows logically into the next by teaching one skill at a time. For example, my son was taught to match an object to an identical object, then to choose the object from a variety of objects, then to say the word and label the object, then to group it with similar objects (all cars, all animals, etc.), and eventually to describe the object's attributes (color, shape, etc.). Each new program built off the previous program.
Within a 2-5 minute sitting, there are about 6-10 discrete trials. A discrete trial is a direction (request) from the therapist, a response from the child, and a consequence (a reward if correct, a lack of reward if not correct). If the child 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 on a specific program, the therapist says "Go play!" My son leaves the table and plays with toys set up around the room. The therapist then records data on how many correct responses were given during the drill. Collecting performance data is done to reveal the subtle areas of progress and of stalling, which we would then work on with a different approach. (When I first heard about collecting data on children in behavioral programs, I thought the idea sounded awful, but I quickly saw that it can be done quietly and respectfully, and the data is useful. It shows how he is learning. It's like recording all the expenditures that you make in a month, so that you can make a good budget. All that data helps you see positive patterns and undesirable patterns.)
Before the next sitting starts, the therapist sits down and plays with my son, to model appropriate toy play and social interaction. After about 2 minutes, the therapist calls him back to the table, and another program is run. This drill & play goes on for 50 minutes, then the child is given a longer break.
Why is the interaction between the therapist and the child so scripted and exact?
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 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 "hyperconsistency" to learn.
What happens when he masters a skill in discrete trials?
The skills learned during discrete-trial sittings are then generalized during the rest of the day, such as at lunch time, on the playground, etc. A skill is first taught at the table where distractions are at a minimum, then the skill is put into practice (into use) in the child's larger world. For example, at breakfast time my daughter might hold up a doughnut and ask her borther, "What shape?" My son, having mastered shapes, responds, "Circle," and receives the delicious reward.
"Given this kind of training, autistic
children very soon begin
to improve and appear pleased with themselves.
Their parents' joy and relief are even greater."
(Dr. Lovaas, Harvard Medical School Mental Health Letter, 6/89)
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 were speech articulation, responding to spoken commands, imitating behavior, and appropriate toy play. These and later 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 enough to learn from them and from the environment.
Are practical, self-care skills taught?
Self-care skills were introduced in a way that built upon the early compliance and imitation skills. We taught dressing, washing, using the potty, etc., as well as other practical skills, such as sitting attentively, following directions, taking turns, etc.
Who provided the training and supervision?
Beginning when our son was almost 4, we had training workshops with Sheri, a consultant from an early intervention organization in New York. (We chose that organization because it was run by two UCLA graduates who had worked closely with Ivar Lovaas.) Every 3 months, Sheri came to our home to do training workshops, where she taught us and the therapy associates how to do the programs. Sheri and her own supervisor also provided us with curriculum direction and high-level supervision of the program.
Our first workshop with Sheri was 3 days long. After that, they were 1-2 days. In between visits, we stayed in contact with Sheri to make programming decisions and to work out problem areas. What the workshops provided us in programs, training and problem-solving was critical.
Note to parents . . .
I remember having to decide what services to seek for our son, and who would deliver them. It was an agonizing time, and we lost a lot of sleep over it. If you're in the position of figuring out what to do for your child and trying to secure services, I wish you the best.
Overall training, curriculum and supervision was provided by our consultant, Sheri. The methods and the curriculum are important, but the people involved in the program are equally critical. Sheri, our supervisor, was a good teacher for us as well as a good therapist with my son. In teaching us how to do discrete trials, she was firm but patient, and always encouraging. She never failed to demonstrate exactly what she was trying to teach us. We're also grateful for the student therapists who worked with our son day to day. Through rain, snow, etc., they've come to our house and given our son a lot of their time, energy and considerable talents. We couldn't have done it without them.
Daily management, materials preparation, training, and supervision of the program was conducted by my wife, Cindy, without whom there would be no program. Running the program day to day was a full-time job for her.
One-to-one discrete-trial teaching was done in our home by Cindy and the therapy associates we recruited. Home ABA programs often use family members and college students or people without a master's degree or even a bachelor's. This sounds surprising at first, but it worked well for us to have young, alert, and firm-but-friendly students carry out the therapy.
The therapists were trained during the workshops with Sheri, and were then trained and supervised day to day by my wife. Each therapist did at least 2 sessions per week of 2 hours each. The therapy team had twice-monthly staff meetings to go over new programs and to observe and give feedback to each other. That insured consistency across therapists and provided an opportunity for feedback and questions to be addressed by the group.
The workshops: The workshops were one or two days long, from 9 to 4, with a 1-hour lunch break. Each workshop focused on my son's current programs, and those in the near future. The workshops were presented to the therapy team to teach them how to deliver the therapy correctly and to give them practice. During the workshop, every therapist worked directly with my son and received feedback and help from Sheri, the workshop trainer.
In addition, before a workshop was over, Sheri and Cindy went over future programs. Between workshops, we consulted with Sheri on an as-needed basis using videotapes and telephone conversations.
Here are some questions I've been asked about our program:
After the workshop is over and the trainer/supervisor leaves, can you really do it?
It is a little scary at first, but we concentrated just on the current programs, which was manageable generally.
What if your therapists run into trouble after the workshop is over?
It happens. We would get stalled on one skill or something, and with Sheri's help, we worked through it. For example, we had trouble doing verbal-imitation drills early on, but we called Sheri and she guided us through different approaches, especially in breaking down words into smaller spoken segments, and that got us back on track.
Can a parent without teaching experience do this?
A background in teaching is not a requirement. With some training and guidance, I think most parents who give it a good try could learn how to be effective. Also, it's so important to be actively involved in the program as much as possible. Nonetheless, we all have our strengths and weaknesses, so some parents do more therapy than others. My opinion: I think that if a parent can do at least three 1/2-hour sessions per week, the parent will have a much better understanding of the program and the child. It makes a world of difference to be "in the trenches" with your therapists. Also, you (as parent) will pick up on techniques to use around the home with your child during non-therapy hours.
Does it get stressful?
It sure does, some days. I'm going to quote a mother on the ME List Forum who described what it's like:
"The financial impact, employee issues and the sheer 24-hours-a-day nature of ABA is a burden that can push any family right to its limits.
"Our family is in the thick of things now, with a child who is 2 years into the program and doing great (about 50 hours a week) but must continue to have intense treatment for some more years before we are relieved. Financially and emotionally we just try to take it day by day. Believe me, his daily gains, big or small, keep us going. Our 7 year old is on the road with us and we try very hard to attend to her and keep her knowing she is loved, loved, loved.
"Before we ever started, our ABA mentor told us how hard it would be and how very expensive it is. She also showed us, in person, her daughter, who was not finished with ABA but was just incredible at age 5. I asked her recently if she was that straightforward with every one. She said yes, always, because families had to know how it could be (depending on individual finances, severity, etc.). I'm glad she prepared us." [Abridged from an 8/5/97 ME List post, with permission from the author.]
In a study I once read, families with an autistic child were observed for stress. Families who began an ABA program for their child showed an increase in stress at first. After a while, however, the stress level dropped and was significantly lower than families who did not run a program. This matches our experience. We're putting our energy into something and seeing it work. As our son gets better, even though the improvement is very, very slow, we feel encouraged. (The study is by Dr. Jay Birnbrauer of Murdoch University in Australia.)
Who makes a good therapy associate?
Among the families I'm familiar with who have a behavioral program, there are therapists of every kind: relatives, neighbors, people from church/synagogue, recent college graduates, college students, high school students. Based on our experience, these are some of our favorite qualities in a therapy associate:
- A responsible, dedicated attitude toward work
- Dependability
- A willingness to learn and follow instructions
- Patience and compassion
- A clear voice and clear speech articulation
For our program, we recruited students from a nearby college. I have also heard of positive results with mature high school students, who can be recruited through their teachers.
When my son was 5 ¼ years old, with over a year of ABA programs behind him, I noted the following signs of progress:
Tantrums: A year ago, our son would throw a tantrum any time we asked him to do something (e.g., "Come here"). It was his way of avoiding requirements. The tantrums were loud and dramatic. And he would throw things. We avoided going out in public. Now, he almost never tantrums, and he never throws things. I can take him grocery shopping, etc. At home, when his therapists call out, "Come here," he stops playing and walks to the table.
Length of utterance was 1 word a year ago. It's up to 5 words, so he can say things like, "I want purple pop, please" or "A cup is for drinking."
Language: His understanding of language concepts has shown exciting progress. He now knows the idea of opposites, prepositions, action words. He is using language spontaneously, for example, "I want bath time all done." He's also using people's names more.
Self-care: He is making good progress using the bathroom, can choose clothes and dress himself, all of which he could not do last year.
Play: He has come a long way with independent toy play. A year ago, he spent most of his idle time rocking back and forth on the couch, or rolling trains on the arm of the couch. Now, he rarely rocks on the couch. He will play appropriately with action figures, dress-up clothes, and still his (beloved) toy trains. He loves to use CD-ROMs on the PC. And he has just started to show a real fondness for animals, which he would have just ignored before. We often hear the request, "I want Sparky on the bed, please," meaning that he wants us to put Sparky the guinea pig on the bed. Then he'll sit next to Sparky, pat her and watch her roam around the bed.
Social skills: Last year, he had some eye contact, but it was fleeting. Now, the eye contact is sustained, and he will even look up at some one when they enter the room. He used to be all but oblivious to other children; but now he shows an interest in his peers and will walk over to them and play next to them. When other kids talk to him, he gives some kind of response. And he is beginning to show real affection for his sister.
Age 6 was a turning point for our son's program, though not the turning point we expected. In the fall of that year, we sent our son to kindergarten. We had prepared him for it every way we could. He'd gone to preschool, and it was mostly a success. At home, everyone worked hard with him on his drills and programs, some of which aimed to teach him classroom skills.
What strong emotions we had, my wife and I, about kindergarten. We were sending our little guy out into The World! There's such a social normalness to sending your child to kindergarten. "Everybody" does it. Three years before, we had sent our daughter off with her new clothes and her new backpack. Go get 'em, I thought, standing among all the other nervous moms and dads in the school yard.
Cindy and I knew there would be difficulties in transitioning our son into a mainstream kindergarten classroom, but we hoped that with our work at home and in cooperation with the aide, our son could become a participating member of the class.
Unfortunately, it did not work. The aide that the school hired had never worked with autistic children before. She could not communicate successfully with my son. He quickly became nervous and confused, and screamed and cried. It took three days to see that it was an unworkable situation. I called the school and spoke with the principal a few times. The classroom teacher and I also talked things over. What next? The conventional approach would have been to place him in a self-contained, special needs classroom.
After his disastrous first days at school, we kept our son home and took a while to think things over. What a painful, depressing time that was, as painful as anything I've ever experienced as a parent. Nothing had worked out as I'd hoped.
I had certainly made the mistake of not following the advice of our consultant, Sheri. She had advised us many months before to request that the classroom aide get trained in our home program. With training in our son's program, which had 2 years of history behind it, the aide could provide consistency during the transition from home to school. Also, learning the techniques would enable her to be successful in guiding and aiding my son in the classroom. Sheri had also advised us to start our son with a shortened school day, and increase the duration up to the full session over time. Well, I knew from prior experience that the special education director would completely balk at those requests, so I didn't insist on them. That was a mistake, because I think Sheri was right.
Those were the dark days. Our kindergarten hopes had collapsed. At night, after the kids went to bed, Cindy and I talked and talked, and we began to see a few things. For one thing, we saw that there were some critical deficit areas that needed to be worked on more intensively.
We also realized that we'd been carrying around an expectation ever since we'd read "Let Me Hear Your Voice" by Catherine Maurice. We'd read that wonderful book right after our son was diagnosed at age 2½, and though we weren't conscious of it, we assumed that if we worked hard at our son's behavioral intervention program, we'd have the same payback as Catherine Maurice did. We'd just assumed that our son would respond as well and as quickly as her two children had. After two or three years, those kids had made great progress, enrolled in kindergarten, and were well on their way to being recovered.
Well, two or three years of behavioral intervention had gone by and we were in a different place. Now we had to look at our son's progress from a fresh perspective, not measured against the Maurice children nor the other family we knew whose son progressed to the recovery stage.
We took a good, hard look at things. What did we want for our son? What exactly did we want him to learn? And we came around to looking at homeschooling, because it offered a good learning environment for him (given his particular skills and deficits). He could be successful and make progress. Well, that's what we really wanted.
Our experience had taught us that simply placing him in a group did not teach him social interaction skills. We were going to have to slowly, methodically teach him social confidence and skills, from the ground up.
So the turning point was not for our son. He continued to learn new skills and make progress as he had since we began his program. The turning point was for Cindy and I, to let go of old expectations.
The decision to homeschool our son did not come as easily as I may have made it sound. I had strong feelings against the idea at first, but eventually I had to admit it had promise. In the morning, Cindy homeschooled him to teach him kindergarten academic skills, and in the afternoon, she continued to use behavioral intervention methods to teach him language and social skills.
The End!
This website has been about the early intervention program we ran for our son until he was age 6½. If you're interested in what an early intervention program is like, I hope my experience has given you some perspective.