A PARENT'S PERSPECTIVE ON
BEHAVIORAL PROGRAMS

A personal story by Richard Saffran

Nothing better describes the mildly or moderately autistic child than "mixed up" - a puzzling mixture of strengths and weaknesses. Children with severe symptoms are unmistakable, but they are more the exception than the rule. There are many more children who don't exhibit severe withdrawal, self-injury, or uninterruptible rituals, yet they just as surely have a severe disability. (Severe is how the DSM-IV describes all the pervasive developmental disorders.)

We (we parents) often judge our children's development by intuition, drawing on notions of desirable behavior that may be very loosely connected to typical milestones of human development. For example, we value love and affection in a young child more than anything. We don't care if the toes add up to ten, as long as we can love him and he loves us.

Well, guess what. Most autistic children relate well to their parents, and to their siblings, and often to other adults, too. Not all, but most do. In fact the cuddly-snuggle-baby phase may last even longer than with typical children, simply because the autistic child is less quickly drawn to the outside-the-family world of playgrounds and playmates. So far, no problem.

what do we expect from a child with autism?

What else do we expect from our children? If you, like me, are living in a developed country in the 20th or 21st century, you probably think it's important for your child to have skills - skills that adults have, that is. We are proud of the child who talks early, knows his ABCs, writes his name, adds 2+2, or can operate the VCR by himself. (What TV show do you prefer your kids to watch? Sesame Street, because it's educational - look at all the numbers and letters.)

The autistic child may have some of these skills, too, even in early childhood. While some have difficulty learning just about anything, it is not unusual to find an early reader, an interest in signs, symbols, and numbers, or an almost precocious mechanical skill. Language is delayed, more often than not, but a sizable number of autistic or "Asperger's" children will talk more or less on time, often memorizing and reciting huge chunks of stories or TV shows. Even the late language may not be a concern, as there really is a wide range of normal language development - later in boys than girls, later still for children in a bilingual environment. So, still no problem - or maybe even the impression of an unusual but "above average" child.

What else do we care about? Being nice. Playing fair. What is the number 1 nag from parents (at least in public)? "Share! Take turns!" Somehow it's not in the child's nature, at least not when grownups are around, so we have to keep reminding them. Well, guess what. Put an autistic toddler or preschooler in with a group of other kids and he probably won't take their toys away, or even protest when Johnny yanks the truck out of his hands. Pretty good, huh?

recognizing the early signs of autism

So what's the problem? You know, but when you share your concerns with friends, family, "experts" you may get a very different answer, and you may listen to them, instead of to yourself. No, I'm not suggesting you find a checklist and diagnose your child by yourself - it isn't that simple. There is an important difference between a developmental disorder and the more common "simple" language delay, and there are competent professionals who can make that distinction. But all too many professionals don't know how to recognize the early signs, or they fall back on their cultural biases and say instead those three most dangerous words: "Wait and see."

He doesn't play with toys like the other kids. He slides the same book under the same bookcase over and over again. He stays in the sink for forty-five minutes, running water over his hands. He has a few words for things he needs but half of them are a code only you understand. He stares at the ceiling fan until you drag him away. He won't go on the playground equipment at all, or he climbs to the top and jumps right off even when you scream "No!". He walks away from you and just keeps going. He turns the lights on and off, on and off. He screams when he sees a bearded face. He stares at the other kids sometimes but he doesn't play with them.

These are the things you see, the things you know are missing. There are other signs, too, that you may not notice unless you have a lot of experience with young children (even those who do work with young children may never note these). He doesn't show you things he's interested in. He doesn't point to something at the same time he's looking at your face, watching for your approval before he goes after it. He loves to watch Barney but he never once points to the show or a stuffed animal and says "Barney!". These are things that typically developing children do a lot, dozens or hundreds of times a day. In a sense it is the social learning, the attention to and imitation of what others are doing, and the need to draw others into our own activities, that makes us the one "civilized" animal on the planet.

So while your very young child may be cuddly, polite, and know his ABCs and 1-2-3s, he may be lacking in the skills he will later need to participate independently and happily in society. Make no mistake, this is not a case of being "different", it is a real disability: his future independence and happiness may be severely limited because he cannot readily learn and use the verbal, social, interpersonal, or plain-old daily living skills requisite to being a part of society, or even a sub-sub-group of society.

That the deficits, the warning signs in a young child, may seem so small, that a pediatrician can even consider saying "Oh, another pushy mother, wants her child to be talking by age 2," is testimony to how little adults know about child development. We judge even young children by the qualities we value in other adults, which are not always the qualities a child needs to be a competent child. A child's job is to learn from other children, period. If he can't do that, something is wrong. He needs help.

can a child with autism 'recover'?

OK, you got this far, unfortunately. You know your child needs help. If he's very young, you want to stop "small" problems now before they grow and consume his future. If he's not so young, you may have experienced miseries that most parents of typical children cannot imagine. You're getting help, but it's unlikely you have full control over how much and what type of services your child receives.

So the question, How much progress should I expect? is an important one. How it is answered by definition limits the amount of progress he will make. If someone believes that autism is a "lifelong disability" then chances are it will be; they will have no reason to keep pushing to overcome every shred of disability. The reverse, of course, is not true: believing in "full recovery" won't make it happen, and may lead you into even more discouragement and unhappiness. You have to know this going in, but there is not much you can do about it.

He's your child, your life. To most professionals, he is a client. They may love him and value him, but they don't take him home at the end of the day, and they don't take him on vacation. They do take their jobs home, at least mentally, and doing well at one's job is an important part of anyone's self-esteem (used to be called ego). No one likes to fail, it doesn't feel good, and it doesn't win you any prizes. So most professionals - not all, but I have to be truthful and report what I see - will validate their own success, regardless of what happens to your child. They do their best and whatever happens is proof of their good intentions and hard work. And if you need proof, they can always find some example somewhere where things did not go as well. Ultimately, if the child doesn't do well, it is the child's problem - he's disabled, we did all we could.

science and autism interventions

Is there an alternative? Yes, it is called science. We depend on science to ensure quality medical care (at least in most industrialized nations). You measure results and compare them to other results. For example, if you are unlucky enough to have a cancer and need chemotherapy, you know that the nausea you will experience is worth it because some scientist has measured a 92% survival rate with and a 42% survival rate without. How your doctor or anyone else feels before, during, or after, may or may not matter, but you know for sure that being alive beats being dead. And your health-care providers are very motivated to do the best they can. Not only is it part of their creed, there are severe legal penalties for negligence: malpractice suits, censure, loss of professional licensing.

We have laws and regulatory agencies that mandate a scientific approach to all medical treatment ("safe and effective"), but when it comes to education, all bets are off. And guess what? Your autistic child is in the hands of educators. That's the law, at least in this country. It is the luck of the draw whether you get to work with someone who reads and understands the research on recovery from autism, or someone who tells you "We find that when parents don't trust the program, the children suffer." There is practically no oversight, and really no accountability for results. State and Federal agencies monitor only regulatory compliance and civil rights violations. They make no note of outcome, good or bad.

What does this have to do with 'Can he really recover'? There is research that gives a very clear answer: maybe. Maybe half the time or so if the educational program is really right. There's another answer: no (or at least, most probably not). No if the educational program is watered-down, part-time, or uses techniques that do not carefully target your child's learning style. Doing it right is really hard! It takes a lot of time and a lot of money. And it requires you to face failure head on: a lot of children will always be at least somewhat disabled.

But the research doesn't tell us who will go how far, so the educator who wants to do well has to assume that if the child isn't learning, it is the teacher's fault. Always. There is always some way to do it better, to help your child learn faster or learn more. It may never happen, there may really be a brick wall there that can't be climbed over, but you can never assume that. As a parent, you may accept some limitations; it's a personal decision. An educator who believes only that your child has limitations will never help him progress to his maximum potential.

progress as the main criterion

I learned a great lesson from the first person who really went all out to help my son: "Don't trust me. Don't trust anyone. The only thing that matters is how much progress he makes. That's how we will judge our work."

There is a self-fulfilling prophecy for those who say of your child, "He will always need help." They may mean this very sincerely - it doesn't matter. What counts is that they will probably give him a watered-down program, one that does not have the intensity or quality to ensure maximum progress. Under their watch he will grow larger, probably learn some academic and self-help skills, overcome some fears, maybe even form some peer relationships. But the odds are that he will remain disabled, unable to participate fully in the school of life. (Remember, that is the school that really matters; the academic schools we think so important are just icing on the cake by comparison.)

Disabled adults have legal protections that are supposed to ensure access to transportation, education, employment, and civil life. There is no such equal access to the experience of being a child: either you do it, or it is gone forever. I will go out on a limb: a developmentally disabled child who is allowed to remain disabled for too many years will probably suffer irreparable harm. He will always bear some burden of being too different, too apart from a world he values as much as you or I. (Why out on a limb? Because there are autistic adults who write about their experiences and clearly state they have no desire to "recover," to lose what they see as an essential part of themselves. I think if you asked a number of autistic individuals and their parents if they would like to turn back the clock and get a lot more help, most would without hesitation say yes.)

what does a behavioral intervention program take?

A lot. More than you can imagine, certainly more hours than any treatment for any disorder I've ever heard of. The insurance companies are lucky autism isn't covered, because paying experienced professionals what they are really worth for as many hours as are needed would break the bank. Instead, you may find yourself working with inexperienced college students, part-time Moms, even high school students.

One peer-reviewed study (Lovaas 1987) shows that a full-time behavioral intervention program helps about half of autistic children achieve normal functioning. Of the other half, most make substantial progress, but still require extra assistance in school and other settings. By comparison, fewer than one-tenth of those in a part-time (or no) program make similar progress. What did it take to make such a huge difference? Some essentials:

1. A full-time program: 40 hours/week of (at first) one-on-one services, 50 weeks a year, as many years as it takes (at least 2 in most cases). If progress is sufficient, this later turns into properly supported "inclusion" in a regular education school.

2. Optimal use of as much of the rest of the time as is practical: all significant care-givers trained to interact in ways that complement the one-on-one programming to help speed learning and generalize skills.

3. Individual, data-based programming: every teaching program is constantly evaluated for effectiveness, and if it isn't working for the child, even if it has worked for other children, something is changed until the outcome improves.

4. Behavioral methodology: a variety of carefully developed teaching methods, based largely on positive reinforcement, that access the autistic child's learning potential.

5. Coordination, communication, consistency: all people working or living with the child work together, meeting daily or weekly or monthly as needed to go over every aspect of the program and the child's progress, or lack of progress, to make frequent adjustments and ensure everyone is using the same program.

6. Training and supervision, with frequent monitoring and feedback to improve every teacher's performance.

7. Starting early (before age 3), although we may yet learn this is not absolutely essential.

Note that the "methodology" is just one of the essential components. This is really a lot of work, well beyond what the typical school is set up to implement and oversee. The model on which many programs are based is from a clinic at UCLA, where supervisors devoted their lives to the project, and enthusiastic, capable college students volunteered to be where the rubber meets the road, hour after hour, week after week.

Anecdotal reports from the field suggest the real world "complete recovery rate" is perhaps half that of the UCLA study. Does that mean it was a fluke? Probably not. In fact, given advances in research, a more diverse population of children eligible for such programs, and the possibility of simultaneous biological (medical) treatment, I expect the potential rate is more than 50% (with worthwhile progress for nearly 100%). Why doesn't that happen?

reasons for not starting a behavioral intervention program

Anyone who has even attempted to set up an intensive behavioral program can give you a dozen reasons. My child is too old for that program. The consultants have waiting lists. I only got two answers to my ad for therapists. I have a new baby and my husband is never home. Two therapists quit, have exams, are on vacation, got in a car accident. I have to wait for the due process appeal, and I don't have money to do it myself. I can't find a lead therapist, everyone is confused, no workshop for another two months. Out of money. Out of time. Out of luck.

There are a lot of children getting short-changed. Only their parents realize the true consequences. This would be intolerable with any other medical condition - remember the bogeyman of "socialized medicine" in Canada, where people actually have to wait for elective surgery? We expect, demand the best possible medical care all the time, on time. But children with autism, and their parents, too often get a different message: wait. Wait and see.

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Copyright 1998-2006 Richard Saffran. This content may be redistributed provided (1) my text is not substantially altered and (2) my authorship is clearly attributed. Copyright otherwise remains with original authors.