Parenting Across the Autism Spectrum

Unexpected Lessons We Have Learned

Maureen Morrell, Ann Palmer

• Publisher: Jessica Kingsley Publishers
• Year: 2006
• Print ISBN: 9781843108078
• eBook ISBN: 9781846425066
• Topic: Social Sciences
• Subtopic: Criminology
• Index: Social Sciences

Maureen F. Morrell and Ann Palmer are raising two very different children: Justin, a whirlwind of activity and mood swings, who is supervised in a residential farm community, and Eric, quiet and passive, who lives independently at college. The authors give an account of the striking similarities as well as the stark differences in their experiences of parenting children at opposite extremes of the autism spectrum.

The two mothers speak openly about their children's diagnosis and early childhood through to adolescence, young adulthood and the day they leave home. They give a moving account of the challenges they faced and the surprising consolations they found along their sons' very different paths in life. Through their friendship and two decades of shared experiences of parenting an ASD child, each has gained a clear understanding of her own strengths and limitations, as well as those of her child.

Parenting Across the Autism Spectrum offers a personal perspective and practical guidance for parents at the start of their journey with autism, especially those whose children are newly diagnosed. It also provides useful insights for professionals working with individuals across the autism spectrum and their families. The book was elected the 2007 Autism Society of America's Outstanding Literary Work of the Year.

Chapter 1

Rebuilding Life after Autism

Ann’s Story

It was a phone call in 1985 that started my life down this different path. My son Eric was two years old at the time and the call was from his preschool teacher. She was concerned that Eric might have a hearing problem. He wasn’t responding when she called his name and he seemed oblivious to the other kids in the class. The call totally surprised me because I had no idea Eric was having any problems in preschool. I felt sure his hearing was fine, but I respected the teacher’s concerns and scheduled a speech and hearing evaluation for Eric.

While waiting for the date of the appointment I studied Eric and tried to remember anything he might have done that was different, that was not within the norm. He had always been a perfect baby. He rarely cried. He slept well. He ate well. As a first-time mom I had consulted the baby books (probably too often!) and Eric had reached all the developmental milestones on time. He was even doing some things ahead of schedule, such as knowing all his ABCs (upper and lower case) by the age of one and a half. His granddad had made him a beautiful set of wooden letter blocks and Eric loved bringing us letters, telling us what the letter was and then saying the name of something that started with that letter. How could anything be wrong with a child who could be so bright and so adorable? I convinced myself that he was fine.

On the day of the evaluation, the speech clinician sat down with me to go over the results. I really don’t remember much of what she said that day. The only thing I remember clearly was her asking me if I had ever heard of autism. I studied psychology in college and I definitely remembered autism. The picture that came to my mind was of a child sitting in a corner, rocking, in his own little world. Even though I knew that picture did not describe my son, I found myself crying while she spoke to me that day. At some level I must have known it was possible that what she was saying was true.

Denial is a funny thing. I understand its purpose to protect us from the pain that our minds or hearts can’t handle. When the speech clinician mentioned possible autism, I could not see the autism in my son. I could find a logical reason for everything that was different about Eric. I went to the public library and looked at what few books there were about autism and none of the case studies I could find described a child like mine. Our friends and family members also couldn’t believe it could be autism. Everyone had a story of someone they knew who didn’t do this by then, or did something weird as a child but eventually grew out of it. I took Eric to our pediatrician and told him about the speech clinician’s concerns. After just a few minutes with us in the examining room the pediatrician said to me, “Look at him. He’s talking. He can’t be autistic. If he is autistic, then I’m the Pope!” This was a professional, a trusted, knowledgeable member of the medical community. How could he be wrong?

We eventually took Eric to a developmental pediatrician who had many years’ experience with children with autism. Eric was almost three years old when this pediatrician officially gave us the diagnosis. We met in her beautiful home where she made Eric and my husband and me feel very relaxed and comfortable. She spent several hours with Eric, examining him physically, observing him playing, and watching how he interacted with us. She also asked us many questions about Eric’s early development and how he was at home, at school, and with other children. It was a long and thorough evaluation and we felt confident that she was considering all the information possible to make her determination. It was very different from my earlier experience at the other pediatrician’s office when the doctor dismissed my concerns so quickly. Although the news was not good and hearing about Eric’s autism changed our lives forever, I will always remember the kindness and sensitivity this pediatrician showed us that day in her home.

I remember a physical pain. It’s hard to describe but I felt it deep inside of me. I cried for several days, performing all the necessary tasks such as taking care of my children, eating, bathing, etc., but I walked around like a zombie. I isolated myself that first week and stayed at home and cried and avoided the people who meant the most to me. They wanted to help me but if I saw them or spoke to them it was too hard to keep up the protective wall I had built around myself. I hated being so vulnerable. My husband was grieving too, but doing it alone. He didn’t want to add to my pain by letting me see the pain he was in. I knew he was hurting, but emotionally and physically I didn’t have anything left to be able to comfort him.

There was also a feeling of everything being out of control. This “thing” had invaded our lives and taken over. I couldn’t make it go away. I couldn’t even understand it. My beautiful little boy had not changed, but in reality everything had changed. The way I looked at him and talked to him changed. The way I thought about myself had changed. My life, Eric’s life, and my family’s life had changed and I had no control over it. I wanted to be able to control my emotions and stop crying, but I couldn’t even do that.

I thought this emotional and physical pain would last forever, but it didn’t. I don’t know how long it took and I don’t know exactly why things changed, but at a certain point I stopped crying all day and started to take control of my life again. My husband and I found a way to comfort each other and to be strong together. I was able to open up again to the people who cared about me and to allow them to help me. I stopped crying and started learning how to help my child.

The first couple of years following the diagnosis were especially hard. At the time of Eric’s diagnosis our daughter was six weeks old and sleep was a luxury. My husband was in a very stressful job and I was barely functioning. Eric was still the beautiful and smart little boy we treasured, but I found myself analyzing everything he did. Why is he doing that? Is that part of the autism? Is he getting worse? It was very hard to relax and enjoy him. I threw myself into his therapy. I worked with him daily at home, drove him to private speech and occupational therapy, and took him to two preschools: one “typical” preschool and a speech and language preschool. We also went to weekly sessions at Division TEACCH (Treatment and Education of Autistic and related Communication handicapped CHildren). All of these therapies and schools helped him immensely but I was exhausted and felt like I was living in my car. In retrospect, as hard as it was, I know now that I needed to be that involved with his therapy. I needed to read everything I could get my hands on. That was my therapy, my way of coping. It helped me feel more in control of my life at a time when everything felt very “out of control.”

I don’t think I could have survived without the support of my husband and my family and the support I received from other mothers of autistic children whom I met. I became involved in a mothers’ support group at TEACCH. It was a unique collection of mothers from all walks of life with many different experiences and backgrounds. The children we represented were mostly boys, of various ages, and all over the spectrum of autism. Some had mental retardation and some did not. Some were included or mainstreamed in regular education classes, and some were in self-contained autism or special education classes.

Despite all of our differences, we mothers had many similarities. We all were overwhelmed and exhausted from too little sleep and too many therapies and interventions. We had the “deer in the headlights” look as we sat around the table, waiting for the next thing to leap out of the dark and hit us. We all felt guilty about something: guilty about not doing enough or doing too much, guilty about waiting too long or starting too early, guilty about the choices we made and the ones we didn’t make.

We came together at a unique time. We followed those brave parents who battled the world’s misconceptions about the causes of autism and fought for the rights of individuals with autism. We came before the current “epidemic” of autism and the bombardment of information, therapies, and “cures” that are so frequent in the media today. We were the pre-internet, pre-Rainman generation of mothers, searching for information and reasons for why we were there. We needed each other, and the close friendships we developed then remain with us today.

It was important for me to have the support of other parents at a time when Eric’s behaviors were becoming more and more difficult. Eric was very rigid in his routines and would have horrible meltdowns when something changed or unpredictable things happened. He would sometimes cry uncontrollably for hours. Nothing I could do would console him. He would get upset if I drove a different route to the grocery store or if the video rental store was out of his favorite video. He would get upset if one of the foods on his plate touched another food. You would think the world was coming to an end if he missed the beginning of a favorite television show. It was hardest when I had no idea why he was upset. From Eric’s point of view, something wasn’t happening as it should have and I often didn’t know what it was or how to fix it. In order to avoid the stress of these difficult behaviors, our family lost all spontaneity. Before we did anything or went anywhere we had to ask ourselves how Eric would react. New situations were avoided if at all possible, and, because outings into the community could be so difficult, we found ourselves staying home more and more.

During these early years it felt as though time was standing still and I would never see the other side. In reality, the whirlwind, difficult early days gradually slowed down and life became more manageable. I began to understand Eric’s autism and how to help him. As Eric’s language improved, his ability to tell us when something was wrong or tell us what he wanted also improved. He began to understand more of what we were saying to him and we could forewarn him about what would be coming next. Before his language skills improved he was frustrated and confused by the world around him. When he began to feel less out of control in his world and as he was better able to understand others and express himself, the meltdowns decreased and gradually disappeared.

A different chapter began in our lives when Eric entered public school. There was a whole new world I needed to learn about. There were countless people to talk to, new acronyms to learn, and a big system to navigate. I had to learn about Eric’s and my rights and how to connect with people who would be providing services and support to my son. I was worried about special education. I remember crying the day Eric was first diagnosed when I thought about him in a “special ed” class. I pictured him in a class like the special education classes in the schools I attended growing up. The students in those classes were separated as much as possible from the “normal” kids. Everyone knew who they were but no one spoke to them. I was scared for Eric to be in a class like that.

I was wrong to fear special education and I learned very quickly that the services and support available for exceptional students were much better than I had imagined. Eric’s first years in public school were in a self-contained autism class with five students and a well-trained teacher and aide. Although the students were all different and had varying challenges and strengths, they were all considered high-functioning. This particular class filled a need for these students who did not quite fit into the typical autism classes but still were not ready to be in regular education classes.

These were years of incredible progress for Eric and two of the most relaxing years for me as his mother. I didn’t feel as though I always had to be on alert to fight for Eric or to protect him. The teachers understood his autism, cared for him, and made sure he was challenged and safe. They set up mainstream opportunities for Eric in the regular education classes, gradually increasing the time out of the autism class as he developed the skills he needed. The autism class teacher would choose the regular education teachers who wanted these students and were willing to work with them. It was a win–win situation. I didn’t know how good a situation we had until we lost it.

In retrospect, I understand now how helpful those years in a self-contained setting were to Eric’s future success in regular education classes. Many parents of children with Asperger Syndrome or high-functioning autism may feel that their child’s being in a special education setting somehow diminishes the chances of a good prognosis for the future. They may connect success in school to full inclusion in the regular education classes. A smaller class size with more one-to-one attention can be a good start for the student on the spectrum who may struggle with sensory or social issues. It is important to look at each individual child, what he or she can handle, and consider whether a smaller classroom setting with a good teacher could be an appropriate option. Being placed in a self-contained special education class does not necessarily mean the child will always be in that type of setting.

After Eric’s two years in the autism class, the school system decided not to offer the class any longer. Eric was placed in a regular third-grade class, fully included without any special accommodations and without an aide. It was difficult for Eric to be in a large class with so many students all day. The noise level and constant activity and movement around the class were a big adjustment for him. It was easy for him to get “lost in the shuffle” because he didn’t ask for help if he needed it. He was so withdrawn and quiet that he rarely attracted the teacher’s attention. This transition to third grade was one of Eric’s hardest years and the first of ten years that he spent fully included in regular education classes. We found some years to be better than others. Some teachers were more supportive than others and some years Eric struggled more academically. But overall Eric was successful in the inclusive setting. He was successful because he was quiet, followed all the rules, and did fairly well with the academics. He didn’t require a lot of extra work and most teachers found it rewarding to have him in their classes.

Advocating for Eric in an inclusion setting was very different from what I had experienced in the autism class setting. I had to be much more involved at the school, and offered to support the teachers any way I could. That included sharing information about autism and about Eric, or volunteering in the classes and on field trips. The regular education teachers often knew very little about the autism spectrum and were sometimes nervous about having a child with autism in the class. I frequently had to convince them that having Eric in their class would not be too difficult. My advocating also involved continually defending Eric’s need for supports and services. Over the years there were times when Eric was doing well academically and the school would suggest removing his autism label. They did not realize that without the organizational and visual strategies Eric was receiving, he would not be as successful.

As Eric got older I started to worry more and more about his upcoming adolescence. I had heard horror stories of children with autism developing seizure disorders and severe behavior issues during adolescence. I knew “typical” adolescence was difficult for parents to survive, so I figured adolescence with autism must be unbearable. I worried for years, waiting for this dreaded stage of our lives that fortunately never really came. Eric reached his teenage years and, except for the physical changes, he barely changed at all. His personality remained fairly easygoing and quiet and no new behaviors started. Of course the kids around him changed, and finding peers who were willing to accept or help Eric became more difficult. The middle-school years were actually the hardest but we survived them. In fact, the middle-school and high-school years were a time of great learning and maturity for Eric.

Time has changed so many things. When I look at our lives now and remember my fears of the future when Eric was first diagnosed, I am amazed by how much he has changed and what he has accomplished. I could not have imagined how far Eric would come and how far I would come as his mother. The autism I didn’t understand or accept is now such a part of our daily lives that we sometimes don’t even think about it. Our family feels very normal most of the time. Eric is 22 and a wonderful young man. He has accomplished so much and we are very proud of him. He is a student at a large state university where he is studying anthropology and zoology. (That animal obsession is finally being put to good use!) He lives on campus in a dormitory and comes home for visits every other weekend. His autism is still a big part of who he is and always will be. He continues to “stim” quite a bit, pacing and talking to himself sometimes, and he still isn’t very social and usually prefers to be alone. He is a man of few words, answering questions when asked but not initiating many conversations. His rigidity as a child has improved, and he’s much more flexible and handles change well. There are no more behavior problems or “meltdowns,” thank goodness.

Parents of newly diagnosed children, who are in the middle of that overwhelming, scary time of adjustment, need to hear that it will get better. Our children are always learning and will develop in ways that we may not expect. Dealing with the really difficult times gets easier, not necessarily because the situations are easier, but because with time we as parents become stronger. The experiences we live through and the things we learn from our children over the years give us more confidence in our abilities to make the right decisions. We continue to have situations that scare and overwhelm us and we may always fear for our children’s futures. But there are always strategies to try, people to go to and to lean on, and lessons to be learned. In the following chapters Maureen and I will be sharing some of the things we have learned about ourselves, our children, and about autism. We hope that our experiences will help you to feel that you are not alone and that there is life after autism. For lessons in rebuilding life after autism, see the box at the end of Chapter 2.

Chapter 2

Rebuilding Life after Autism

Maureen’s Story

Justin’s test results read like a telegram: Profound Mental Retardation. STOP. Chromosome Abnormality. STOP. Severe Autism. STOP. The professionals explained the reports, but those were the only words I could hear. Later I would understand that the lack of oxygen from the double-wrapped umbilical cord at Justin’s traumatic birth was not the primary cause of his developmental delays. That was just a little bonus. Some spontaneous mutation of his cells had occurred before I knew I was pregnant, leaving an extra piece of Chromosome #15 and permanent flaws in the developmental blueprint of his brain. I had to admit that my special educator husband had been right all along. He had recognized the severity of Justin’s problems from the moment of his birth. Clinging to my glass-is-half-full worldview, I had minimized Justin’s developmental delays, despite my own training as a pediatric nurse.

As we left the Developmental Evaluation Center that day in 1981, Rob tried to console me by pointing out that at least now we knew the real source of Justin’s problems. For a moment I felt the relief that comes with a definitive diagnosis. Then a new realization began to set in. The three-year-long battle I had been waging between despair and hope was over. Despair had won.

With the confirmation of our worst fears, I felt lost and inconsolably sad. I had expected a child with unlimited potential, a Justin who would be the perfect combination of all of our best qualities. It is the dream that all parents share. We believe our children hold the potential to be the best at everything they do. Being new parents, we fail to see that their lives will be more like the television commercial where a beautiful, curly-haired little girl sits serenely eating a bowl of cereal. While she eat...

Table of contents

• Cover Page
• Other Books
• Title Page
• Copyright
• Contents
• Acknowledgements
• Introduction
• 1. Rebuilding Life after Autism: Ann’s Story
• 2. Rebuilding Life after Autism: Maureen’s Story
• 3. Balancing Family Life: The Siblings
• 4. Balancing Family Life: Marriage and Extended Family
• 5. Advocating for Our Children
• 6. Taking Care of Ourselves
• 7. Finding Our Way
• 8. Dealing with the Public
• 9. Accepting Our Children and Ourselves
• 10. Letting Go: Ann’s Story
• 11. Letting Go: Maureen’s Story
• Appendix A: Student Information Sheet
• Appendix B: Books that Made a Difference
• References