A PARENT'S PERSPECTIVE ON
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
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
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
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
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
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
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
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
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Click here to
read more personal stories from parents of children on the autism
spectrum, and from adults living with Autism, Asperger's syndrome
and other Autism Spectrum Disorders
Reproduced with permission from http://rsaffran.tripod.com
Copyright 1998-2006 Richard Saffran. This content may be redistributed
provided (1) my text is not substantially altered and (2) my authorship
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