Introduction Need Help? Academics What Does it Take?

This page is a parent’s perspective, and this is mostly my opinion. There may be education professionals who will disagree with me, and there may be other parents who would not agree with me. So be it! I just think we need to recognize that people who have autism can learn!

It may mean different ways to teach different people. One person's autism is not the same as another’s; this does not affect the goals of each individual child, and the way they learn. That said welcome to our page and hope you enjoy it and that it will help you learn more about teaching children with autism or let you know you are not alone if you happen to be a parent and are feeling lost.

 Unlike most sites devoted to Autism Spectrum Disorders, we have not included a section which describes the disorders themselves, since we feel that so doing would be redundant. Our links page will direct you to several sites which do an outstanding job of describing the nature of Autism and Asperger's Syndrome. The purpose of this site is to describe how each child with autism should have the chance to learn pre-academics. academics, and social skills just like other children.

Most children with autism don't get as much educational help as they need. All too often the local educational authorities simply refuse to do what they should, but it can also result from having the wrong answer to one of these questions...




     Does the child really need help?

Every child is different; but every child can learn - 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 them and they loves us.

Well, guess what. Most children with autism, 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 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 or her ABCs, writes their name, adds 2+2, or can operate the VCR by themself. (What TV show do you prefer your kids to watch? Sesame Street, because it's educational - look at all the numbers and letters.) We expect our children to be treated as a person. I cringe when a teacher will kiss my daughter or will have her sit on their lap! This is not acceptable.

The child with autism 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 #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 pre-schooler in with a group of other kids and he or she probably won't take their toys away, or even protest when Johnny yanks the truck out of their hands. Pretty good, huh?

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."

They do not play with toys like the other kids. They slide the same book under the same bookcase over and over again. They stay in the sink for forty-five minutes, running water over their hands. They have a few words for things they need but half of them are a code only you understand. They stare at the ceiling fan until you drag them away. They won't go on the playground equipment at all, or they climb to the top and jump right off even when you scream "No!". They walk away from you and just keeps going. They turn the lights on and off, on and off. They scream when they see a bearded face. They stare at the other kids sometimes but 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). The child doesn't show you things he or she is interested in. They do not point to something at the same time they are looking at your face, watching for your approval before they go after it. The child loves to watch Barney but 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 or her ABCs and 1-2-3s, he or she may be lacking in the skills they 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: Their future independence and happiness may be severely limited because they 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 or she can't do that, something is wrong. And they need help.

     Can he or she really Learn? YES!

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 or she 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 "Normal" 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 or She is your child, your life. To most professionals, they are a client. They may profess to love them and value them, but they don't take the child 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.

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 healthcare 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 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.

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, organization, 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.

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 "improve," 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 it take?

If you have the resources and education to stand up for your child’s rights, not much. It is more than you can imagine, the conjunction of the education and psychology fields. Certainly more hours than any treatment for any disorder I've ever heard of. The insurance companies do not cover  autism, it is not 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.

There are lots of Professional literature that shows the out comes of ABA. The one peer-reviewed, published study so far (there are others in the works) shows that a full-time behavioral intervention program helps about half of moderately or severely autistic children will 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). This later turns into properly supported "inclusion" in a regular education school. Optimal use of the rest of the time: all significant caregivers trained to interact in ways that complement the one-on-one programming to help speed learning and generalize skills.
2. 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.
3. Behavioral methodology: a variety of carefully developed teaching methods, based largely on positive reinforcement, that access the autistic child's learning potential.
4. 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.
5. Training and supervision, with frequent monitoring and feedback to improve every teacher's performance.
6. 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. The main problem is trying to integrate a whole different philosophy of Behaviorism with the world of education. 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 "improvement 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 improvement rate is more than 50%. Why doesn't that happen?

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, and demand the best possible medical care all the time, on time. But children with autism, and their parents, get a different message: wait. wait and see.

Information contained on this web site is provided to help parents and professionals to understand autism and the services available locally pertaining to treating autism. We do not endorse or recommend any organization or person, and any link or mention in our web site in any way should not be construed as such. If you have questions about autism, you should consult a qualified medical professional. © 2000, 2004. Site last updated: December 7, 2004