Beyond the Autism Diagnosis: A Professional's Guide to Helping Families

Marion O'Brien, Ph.D., is Professor in the Department of Human Development and Family Studies at the University of North Carolina at Greensboro (UNCG). She also serves as Director of the Family Research Center at UNCG, an interdisciplinary group of researchers interested in parent–child relationships, children's development, and family functioning.

Dr. O'Brien conducts research on parenting, parent–child relationships, child care, and the relationship between parental attitudes, parental behavior, and child development. In addition to her work with families of children with autism spectrum disorders, she studies families of children with other developmental disabilities and those who are at medical risk, and adoptive and foster care families, as well as families of children who are typically developing.

Throughout her career, Dr. O'Brien has maintained a strong focus on the application of findings from research to practice and policy. She has developed and implemented intervention programs that directly benefit children and families. She organized and directed an inclusive full-day child care and early intervention program and an in-home family intervention program in which research-based knowledge of parenting practices was applied to assist families at high risk for abuse and neglect. She has written several books that translate research findings into practical guides for professionals in human services fields.

Julie Daggett, Ph.D., is a licensed clinical psychologist who specializes in children and adolescents. She has a private practice in San Luis Obispo, California, Family Institute of the Central Coast that offers comprehensive psychological evaluations and outpatient therapy. She regularly incorporates home, school, and community visits into her clients' evaluations and therapy work. In addition to working privately with families, Dr. Daggett provides consultation and in-service training for many school districts in California related to psychological evaluations for autism spectrum disorders, functional assessment/analysis, positive behavior support, and ways to improve the quality of education for students. Although her primary focus is applied practice, Dr. Daggett also occasionally teaches graduate and undergraduate courses at California Polytechnic State University, San Luis Obispo, on positive behavior support and child development. Since 1997, Dr. Daggett has conducted numerous social skills groups for individuals, ages 3-17 years, with autism spectrum and related disorders. These groups are individually tailored to incorporate each child's preferences, and goals are set with the children's and parents' active participation. She is also frequently contracted to help school districts develop campus-wide and/or classroom-based social skills programs that incorporate the principles behind positive behavior support. Dr. Daggett, in collaboration with The Marlo Group, is developing an educational video and manual that trains parents and professionals to maximize the number of daily hours that children with autism spectrum disorders stay actively engaged with others and their environment in a meaningful way.

After a child's autism diagnosis, how can therapists, educators, and early interventionists best support parents and caregivers? This book is filled with the first-hand parent feedback professionals need to answer this critical question. Building on their research project that captured the experiences of more than 60 families, the authors reflect on excerpts from dozens of interviews that reveal parents' needs, concerns, beliefs, and dreams. Through these candid revelations and the authors' expert commentary, professionals will increase their understanding of the parent experience so they can provide the best possible services for children and families. Readers will discover invaluable insights they'll use to

• avoid misunderstandings and communicate accurately and sensitively
• understand parents' complex emotions and perceptions
• nurture strong, respectful partnerships with parents
• conduct effective assessment and intervention
• demystify assessment results for parents
• assist families in choosing and evaluating intervention services
• help families manage the short- and long-term issues that arise when parenting a child with ASD
• increase their own awareness of the vocabulary of autism and the facts and mysteries of the disorder

Essential reading for students, new professionals, and established practitioners alike, this incisive, accessible guide gives readers something they can't get elsewhere — a deep understanding of parents' needs and feelings, directly from over 60 families with firsthand experience.

"Personal, applicable, and easy to read...truly helps explain the origins of potential conflicts and miscommunication that can occur between parents and professionals."

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 good girl.

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 affectionate.

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 everything!

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 the time.

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.