It has been well recognized that parents of children with disabilities
are the constant in their children's lives—the people who are with
them at each developmental stage, from preschool through high
school and beyond, through thick and thin, in every conceivable situation.
What may at times be overlooked is that the presence of an autism
spectrum disorder is also a constant in the life of a family. In many families,
parents have been concerned about their children's development
almost from birth. Throughout their children's preschool and school
years, parents have thousands of interactions with professionals about
their children, and they experience constant worries about their children's
future. Thus, while dealing with the mystery of autism is challenging
for all who come into contact with children who have it, families
are particularly affected. At the same time, families know their
children well and love them deeply. They have much to tell the rest of
us about ASDs.
In this chapter, we let parents do most of the talking and we listen
to them. The parents whose words are reported here were participants
in a research project led by the authors and described in Appendix
A. The parents—63 mothers and 10 fathers—talked to us about
their perceptions of their children with ASDs, their early worries and
uncertainties about their children's behavior, their emotional responses
when their children first received a diagnosis of an ASD, and the
process of adaptation within their families. In this chapter, we rely on
these families to help us understand the experience of having a child
with an ASD.
PARENTS TALK ABOUT THEIR CHILDREN
When asked to describe their children with ASDs, most of the parents
used the same words any other parents would use to describe
their children—delightful, unique, loving, happy, and beautiful. Some typical
responses follow (all names have been changed):
Denise is a very loving little girl. She likes to play. She's a real
Javon is a great kid. He is a joy to have around. He loves books,
and he likes to play with trains too. He's really sweet, really
Steven is happy. He likes to do things by himself, for himself. He's
really happy and independent.
If I had to describe Bobby quickly, it would be active and inquisitive
and happy and very cute!
Like most parents, these mothers and fathers focused first on the good
traits in their child and not on the difficulties that ASDs cause. And
when the parents talked about their children's less attractive characteristics,
they tended to describe their children not in diagnostic terms
but by using the same kinds of words other parents use:
David's just a typical 5-year-old . . . energetic, getting into
Charlie is a really, really unique little fella. He bounces into a lot of
different moods. And he loves attention!
Kelly's very single-minded, very stubborn.
I'd say Larry's odd. Very methodical. Unpredictable, definitely.
As far as behavior goes, Luke's a very emotional kid, very up and
down. Things with him are either great or not, one of the two.
He's very much a one-task person.
When teachers and therapists meet with parents, there is a tendency
to concentrate on the child's symptoms rather than on the child's
individuality and uniqueness. But it is the individuality and uniqueness
that parents truly care about and that are most rewarding to everyone
who is involved with a child. By listening carefully to parents talk about
their children, professionals can create a positive framework for a pro-
ductive working relationship that will ultimately benefit everyone—
especially the children.
PARENTS' FIRST CONCERNS
Autism spectrum disorders are usually not diagnosed until children are
approximately 3 years old, although research is underway to try to
identify ASDs earlier. Although some children are diagnosed at age 2,
many, especially those whose language development is not obviously
delayed, still receive their first diagnosis at around the time of school
entry. This means that there is typically a period of time, sometimes an
extended period of time, when family members have no medical diagnosis.
Looking back into this time, many parents recall a feeling that
"something was just not right." One mother said,
I started noticing things when he was not even quite a year old.
I just knew that he was "off." No smiling, very little crying, no
reaction to anything, and he would have to have certain movies on.
Not surprisingly, parents of children who are ultimately diagnosed
with more severe ASDs tend to notice problems earliest. Among the
31 biological mothers of children with autistic disorder whom we interviewed,
the average age at which they remembered first having
serious concerns was 18 months (range: from birth to 48 months),
whereas the 14 mothers of children with PDD-NOS reported their first
concerns at an average age of 27 months (range: from 6 to 60 months)
and the 7 mothers of children with Asperger syndrome had first concerns
at 31 months (range: from birth to 72 months). The most common
early marker for all these families was a problem with speech and
communication. The frustration of not being able to share their child's
world is evident in some parents' reports, such as that from this father:
He doesn't talk, no matter how much we work with him and
everything, he really does not talk. He may repeat what you say,
but usually he doesn't understand what he's saying most of
He never said the name "Mom." He always said, "Daddy, Daddy,
Daddy," but he never said "Mama" ever, and then it was just gone.
At 9 months I noticed that he would learn to wave and then if a
week went by and you weren't asking him to wave every day, he
would just look at you like you were speaking a foreign language.
We went on a trip and when we left he was waving bye-bye. We
came back 4 days later and I said, "Wave bye-bye at Mommy," and
he just looked at me like he had no clue what I was talking about.
Another common early sign parents reported is unusual behavior
with toys or other people. Several parents told similar stories:
He didn't really play with toys. His favorite thing to do was to empty
all my plastic containers out on the floor in the kitchen, and he
would dump the toy basket out but he wouldn't play with the toys.
He used to walk around the perimeter of the house and the
yard. . . . He played with toys differently when he was little, and
we tried not to get too upset about that because children are
different. He'd sit there on the floor and he would just roll the
truck back and forth and just look at the wheels, and he was
more concerned with wheels.
He used to carry cars around in his hands. Little Matchbox cars.
And he would lose one of them and he would say, "Where's the
blue car?" And I would have to find that exact blue car. It couldn't
be another one; it had to be that same one.
I thought possibly he was deaf because when I would call his
name, he wouldn't look at me. He was no longer playing with
toys . . . and he was starting to just want to watch movies over
and over again.
Many families of children later diagnosed with Asperger syndrome
recognized significant problems only when their child was in a
setting with other children. One parent said, "He was in the principal's
office three times in kindergarten. I told my husband, 'This can't be
good!'"Another remarked, "I remember taking him to playgroup, and
it was just a disaster! He was very unhappy and very uncomfortable."
A third noted,
We had him in two different schools and he had a lot of trouble.
Then we decided to home school him. He calmed down quite a
bit, but then some of the differences showed up a lot more to me
when I was dealing with him a lot of the time.
Parents also recall early sensitivities to sounds, touch, and foods.
At the time, parents usually put these on the list of personality quirks,
but the sensitivities eventually contributed to a sense of unease with
their child's development.
He was not eating as well as other kids. He was really picky, and
he didn't want to mix textures. He would rather eat bread by itself
and then ham but not together as a sandwich.
He couldn't stand to be in the tub. He couldn't stand lotion on him.
It was very bothersome when in the house someone laughed and
Nicholas cried and no one knew why.
His senses were so heightened that he would be either highly
afraid of anything a little bit loud or a little bit fast or a little bit
warm. Just all of his senses seemed to be way overloaded.
When he was crying, if you tried to hold him it made him cry
harder, which was really puzzling to me. I had the baby swing, and
if I put him in it, he'd get really upset. It became clear he didn't like
motion and he particularly didn't like being touched.
I noticed when music would play, she would cry to high-pitched
noises at times . . . and I knew something was quite wrong.
Once they have received a diagnosis for their child, such early experiences
are reinterpreted as symptoms (Avdi, Griffin, © Brough,
2000) and translated into clinical language: speech deficit, restricted
behaviors, sensory defensiveness, or social skills problems. But looking
back into their memories, parents think and talk about their child in
much the way other parents do. Although clearly recognizing that
their child has an ASD, parents are tuned in to the unique characteristics
that make this child their child and different from others:
When other people are describing their kids [with ASDs], they just
sound so much different than Andy. They blow up when things
don't go their way, they won't eat certain things. And he's not like
that at all.
Brad is not your normal autistic child. He is very lovable—he loves
hugs and kisses and is very eager to learn.
To look at him you would never know that there's a problem . . .
I talk to other parents who have it worse off and I'm really thankful.
He's a really loving child and he's bright and he's curious and he can
be downright funny sometimes.
The movies on TV show the very severe cases, and that's what I
thought my child was. But my child is nothing like that. My child
comes to you and tells you that he loves you, he hugs you, he
laughs, and he looks like every other child.
Just as a child with a disability is first and foremost a child, so a
parent of a child with an ASD, no matter how involved he or she
might be in the child's therapy or educational programming, is at heart
a parent whose image of a perfect child will never be erased. Teachers
and therapists who take the time to listen to parents as they share
these memories can gain insight into the child's unique developmental
pathway and the commitment of parents to do whatever it takes to
help their child.
Excerpted from Chapter 2 of Beyond the Autism Diagnosis:
A Professional's Guide to Helping Families, By Marion O'Brien, Ph.D., © Julie A. Daggett, Ph.D.
Copyright © 2006 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.