Children With High-Functioning Autism

A Parent's Guide

Claire E. Hughes-Lynch

• Publisher: Routledge
• Year: 2021
• Print ISBN: 9781593634025
• eBook ISBN: 9781000491081
• Topic: Psychology
• Subtopic: Education General
• Index: Psychology

Children With High-Functioning Autism: A Parent's Guide offers parents the information needed to help them cope with their child's autism and to navigate the path as they first perceive differences, seek assistance and treatment, and help their child develop into his or her full potential.

Including examples of the author's own experiences with her child with autism, this book helps families realize that there are others on similar paths—and that help is available. With topics ranging from understanding the first signs of autism and the diagnosis, finding a support network, and filling out necessary paperwork, to determining the various types of therapies available and planning for adulthood, this book provides parents with valuable insight into this new world.

With an emphasis on high-functioning autism, Pervasive Developmental Disorder-Not Otherwise Specified, and Asperger's syndrome, Children With High-Functioning Autism: A Parent's Guide helps parents learn to celebrate small areas of growth and keep the focus on the child.

1
Starting the Journey: From the Beginning—and Even Before

DOI: 10.4324/9781003233633-2

On March 6, 2001, our family began. Our daughter, Elizabeth was born at 5:25 in the afternoon after 12 hours of labor. She was a much-wanted child that we had been trying to conceive for more than a year. Because of fibroids and other issues, it had been hard to get her. I remember crying, realizing that it seems so easy to conceive in your teens and twenties, but here I was in my 30s and with caution thrown to the wind, all of those years of desperately trying not to get pregnant were coming back to haunt me. We cried and celebrated that day in July when the stick showed two lines of pink.

BRAIN DEVELOPMENT ISSUES

Often mothers of children with autism will report that they had a feeling of something "not quite right" even while they were pregnant. There are some genetic studies, according to Michael Szpir (2006), that seem to indicate that the genetic alterations that can turn into the propensity for autism occur around 8 weeks after conception. Sometimes not, but there often is the mother's instinct that something's off. I loved being pregnant, and I was always aware of another life force within me. I truly believed in God after being pregnant because of that connection to life and a sense of growing. However, 12 weeks into my pregnancy, we had a scare when an ultrasound found a fiber wrapped around her little tiny fetus head. Often found around arms and legs, these fibers could stunt the growth of the limb. We knew that there was no way the baby could survive with the fiber wrapped around her head. Our obstetrician took a wait-and-see attitude, and many prayers later, no sign of the fiber was present at 16 weeks. But there were fibroid tumors in my uterus that were huge and growing and the poor baby was curled around them. Throughout my whole pregnancy we were holding our breath. However, my water broke when she was 37 weeks and she was delivered vaginally and relatively stress-free—a healthy, 6 pound, 12 ounce little girl. The challenge of the pregnancy made me so relieved that she was "normal" at birth that I never questioned some of her odd antics as a baby. She was pink and beautiful and all potential.

Her birth story is different than many children with autism because it was the pregnancy that was stressful, not the actual birth. Ray's birth is more typical of a birth reported by mothers of children with autism. His labor was about an hour from 0-10 dilation, with only 2 hours of active contractions. In the birth process, the muscles of the birth canal contracted so fiercely, he was born with a significant cephalohematoma or cone. Lots of babies are born cone-headed, but the lump on ours was almost as big as the rest of his head. It was quite disturbing. The doctors told us to watch the lump and that it could take up to a year to go down. There was a good deal of "Well, we'll have to wait and see. It should be fine," which was just vague enough to worry us. To our great relief, it had rounded off after about 4 months, but the pressure of those contractions pushed significantly on his brain.

Both children also were quite jaundiced and did not receive treatment in a timely manner. They released us from the hospital one day after birth, and we were told that they might be a little jaundiced and to put them in the sun. Not a real problem finding sun in Southwestern Florida! So, we bathed our little darlings in sunshine until their first appointments at one week. In both cases, the pediatrician found significantly elevated jaundice levels that were "coming down," indicating higher levels before that would have required the bili lights. Even in the case of my son, where we were looking for problems, we were told "You're fine" by the hospital and told later by our pediatrician that we had gone into the danger zone of bilirubin. Jaundice can carry the possibility of brain damage. Not often, but it can.

Ray also had a terrible fall onto a concrete floor where he hit the front of his head when he was 7 months old. He did not pass out, and the x-ray came back OK, but again I heard the cheery doctor voice of "He should be fine. Just wait and see."

Do we have MRI data that our children have brain trauma? No. But there is the underlying fear and niggling concern of what happened and "if only ..." thinking. I still sense that some of their issues were triggered by some form of brain pressure or injury—both in utero and afterward. In addition, there is a common theme of head trauma or high fevers noted among mothers of children with autism.

Rachel's Story

My pregnancy with Ben was as normal as could be. Blood pressure, weight gain, growth rate: all good. Then came delivery day. After 10 hours of unmedicated intense labor, I finally resolved that this was not going to happen without medication. I took the epidural and things calmed down, at least until it came time to push. I was ready to go and so was Ben. After just a few times, the nurse's face turned to grave concern, and she told me to stop immediately. Was I doing it wrong? Apparently my tailbone was digging into his forehead each time I pushed and his heartrate kept dropping in half. An emergency C-section had to be done and the nurse had to then push him back up through the birth canal. We have heard from other parents that they too experienced a traumatic birth and that frontal lobe trauma is a common factor.

Ben also had to have surgery to correct a hydra seal in his scrotum when he was 4 months old. He was taken back to surgery with a smile on his face and woke up a few hours later a different baby. We were told that he would not even remember the surgery and be back to the happy baby we had in no time. It was a few weeks before we started thinking that something had gone wrong during the surgery because our happy baby was not back. He seemed more introverted and irritated. Neither of us had experience in raising babies, so we just kept trying our best to do the right thing. We later heard from a psychologist that it is unusual that we were not permitted to be with him while he was undergoing anesthesia, and I regret that I couldn't be with him during the surgery to protect him. We will never know if something did go wrong.

HINDSIGHT IS 20/20: ISN’T THAT CUTE?... BUT SOMETHING’S NOT QUITE RIGHT

Autism is sneaky. I can look back now and say, "Ahhhh, so that was the autism coming out." But at the time.... I have backgrounds in both gifted education and special education, and my gifted education experience means I tend to look at kids from a strengths-based perspective. I see things that could be the germ of a talent or activities that show promise of great thinking. Even with a special education background, I tend not to look at things from a deficit view. One of the most significant challenges of working with two different sets of professionals is that one might see a behavior as characteristic of a deficit, while the other sees the behavior as evidence of a strength.

For example, as an infant, Elizabeth would get the cutest expression on her face when she was startled. Her eyes would get round, her mouth would open, and arms would fly out at the slightest change in her environment. We were intrigued at this and said, "Wow! What an alert child we have!" and I would spend some time soothing her. It's a startle reflex that infants have and adults still have to some degree. It's more than surprise—it's an instinct that infants use to let themselves know that something has changed, and it activates their "fight or flight" adrenaline rush. Heart rates accelerate, pupils dilate, and the body tenses up, ready for action. All infants have it, but infants who later develop autism often have a very sensitive startle reaction. In other words, they don't normalize very quickly—the world is a very nerve-wracking place that causes high anxiety.

Another example: When she was 9 months old, my daughter would bang on the dryer and then listen to the differences as she banged on the washing machine. Then, she would repeat her actions. Repeat. Repeat. For about 30 minutes. Isn't that cute? We were convinced she would either be a drummer or a repairwoman. She spent an hour at a time listening to the different sounds of the bangs. She still has this skill of distinguishing little details and analyzing how things are alike and different. Hidden Picture games are no fun for her because she just points right at the missing objects. I bad to explain to her once that this is hard for most of us, and it's fun for us because it's a challenge. She just shrugged. Now, of course, I know that it's the autism combined with an eye for detail, but at the time, we were very impressed with her ability to concentrate and discriminate.

As a baby, Elizabeth insisted very definitely on being held facing outward. She would cry and strain her head around trying to see around me when I held her facing me. So, I happily turned her around so that her back was to me and she was free to observe the world around her. I was pleased to have such a curious and exploratory child. Because of an old back injury, I couldn't carry her in one of those front sling-style packs, so I ended up with the baby on my hip, watching the world from a slightly tipped angle at times. However, putting her down was a real challenge.

Elizabeth hated tummy time—not just resisted it, but hated it. I was a good mommy of the early 2000s who laid her child down on her back to avoid Sudden Infant Death Syndrome (SIDS). We were deeply grateful that we lived in Florida so that the whole issue of blankets was not a concern. She would go into her little onesies, lie down on the big crib mattress, and play contentedly, often soothed by the mobile. But get her up and put her down on the floor face down and she would turn into this monster of a child who would shriek uncontrollably for hours. I at first thought that she would cry herself to sleep, but no such luck. For the first 5 months of her life, Elizabeth experienced this Jekyll-and-Hyde transformation every time we turned her over onto her stomach. Tummy Time became Torture Time—for everyone. I tried the nifty mat with the colors and activities. I tried no mat. I tried a soft texture. I tried the cold tile floor. In all cases, we had unrelenting crying.

Once she learned to roll herself over, around 5 months old, we would put her on her little mat and she would immediately roll herself over onto her back to play with her toes. All of the baby books said not to worry about this—that the baby's head will round out when she can hold her head up. But our baby spent so much time on her back looking out at the world that her actual head shape was altered. Needless to say, Elizabeth is now 8 years old and still has a flat spot on the back of her head. When I'm rubbing her head, I am always reminded of the Western Native American babies who were carried on flat boards, or "papoose boards," and had flat heads. Flat heads used to be a significant cultural trait encouraged among some Native American populations in the West, and the White men and other tribes were called "round heads" when the cultures collided. There's even a Flathead Reservation and a Flathead River in Montana named after this practice. However, I know that for us, her flat head is a symptom and symbol of her autism—hidden, but still faintly perceptible.

Rachel's Story

Even at an early age, Ben was driven by color. He had to have a specific colored cup, plate, utensils ... everything. He arranged his cars in order of color and the most significant recollection of his need to organize by color was an activity cube that had colored pegs and slots to put them in. He was only 6 or 7 months old when we found the cube with all of the pegs arranged in the slots by color. It was actually our first realization that this child was a bit different.

Around the age of 2 he began to assign colors to family and friends. Based on your relationship to him, you were assigned a color. Mom = yellow, Dad = blue, brother Charlie = green, both grandfathers were red, and ironically his one grandfather's girlfriend was assigned orange, which is the combination of authoritative yellow (Mom) and fun red (grandfathers). The same was applied to his fun aunt.

Once he began understanding family relationships, he no longer used colors to comprehend the relationship of a person to himself, but during that time it was fun to see what colors he would assign people. At the time we just thought it was just another quirky thing that he did.

There comes a time when you begin to realize that something really isn't normal or even "cute" anymore.

I remember Elizabeth playing in the bathtub, happy and content as she watched the water run through her fingers. She was sitting in one of those bath seats that kept her sitting up while I could wash her and her hair. She loved bath time, until the washing part. She would submit to my washing her hair, which she didn't like, but didn't stress out about too much. Then, the water would rinse off the soap and she would go ballistic. I remember being very proud of myself when I finally realized that she was afraid of the rainbows of the soap bubbles reflecting on the surface of the water. She was 9 months old and scared of rainbows in the water.

Hair washing and haircuts are frequent issues among children with autism. My friend Tina would cut her son's hair while he slept over the course of several days. "Badly," she emphasized, "but at least he didn't have hair in his eyes anymore." We were determined that we would win the haircut battle with my son, and it took three adults to hold him down in the stylist's chair one memorable day when he was 2.1 was determined that he would not win this battle, but afterward, when we had tipped the stylist more than the haircut itself cost, I realized that this was something we would have to grow into.

There were other sensory issues that posed concerns. We lived in Florida about a mile and a half from the beach. We never went. From the time of her birth until she was about 2 years old, Elizabeth hated the sand. She liked the water all right, until a wave would hit her in the face. But the sand ... she would try to climb my legs to get away from it. Later, I tell the story of how she overcame her fear of sand, but only after we worked on overcoming that fear for more than a year.

Babies with autism will often lock into sensory stimuli that scare or intrigue them. In our case, I realized after the fact that her love of different sounds, fear of water reflections, her hatred of tummy time, and her abhorrence of sand were part of the sensory seeking and avoidance facets of autism. That sensory input was too much for her to handle. And such sensitivities are highly individual to each child. I have a friend whose son hates green—but only a particular shade of it. Dark green—fine. But light, bright green—no go. One memorable dinner at our house a plate of peas was presented to him (along with a hamburger and French fries—I was trying to be a good hostess!), resulting in the beginning of a meltdown, whereupon my friend and the child had to leave immediately. Such immediate leavings often are a symptom of the recognition that you don't get to live the same life that other mothers seem to get to live.

Similarly, babies with autism often hate being touched. When Elizabeth was an infant, I bought a book about baby massage—how it's so good for developing nervous systems, how it can calm them down, how it's a wonderful soothing process right before bed. Not for us. Elizabeth loved to be held, but not rubbed in any way. She turned over for the first time as I was trying to calm her down by rubbing her back—she squirmed so much away from it, she flipped herself over. She was so surprised, but soon mastered the art of flipping! Many, many mothers tell about how their child hated, or passively withstood, being hugged, touched, or otherwise shown affection. In her 2003 book, The Boy Who Loved Windows, Patricia Stacey noted that it isn't because they have no feelings, but that they are so completely overwhelmed by their feelings of neediness and love that they avoid the situation that causes such intense emotions. Thus, hugging and loving has to be carefully controlled so that they aren't overwhelmed by the intensity of their emotions.

You quickly learn as a parent to avoid certain situations, certain textures, or certain places. You accept things that you never imagined you would find acceptable. It's frustrating when you realize that your child's issues are controlling your life—and everyone else has something to say about that.

WARNING SIGNS: DOCTORS, MOTHERS-IN-LAW, AND THE PUBLIC

Three little words can trigger you to know that something is wrong beyond your child being quirky You will hear them time and again from your mother, your mother-in-law, from complete strangers at the grocery store—even you will say them once in a while. These three words will be directed either at you or your child and you will soon learn to wince—hard—at them: "Can't you just..."

Behave? Say "hello" to our neighbor? Play nicely with the children on the play date? Stop buzzing? Go to sleep? Wear the nice pretty dress for Easter? Make him stop? Tell her to be quiet? Get her off the swings? Clean up those crushed Cheerios?

These words will haunt you at home until you can educate everyone who comes into your house. They will be everywhere in public. My reactions ranged from shrieking back at the judgmental idiot, to apologies, to stone cold silence. I still remember one airline flight attendant who had not helped...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Contents
• Acknowledgements
• Introduction: How Did I Get Here?
• Chapter 1 Starting the Journey: From the Beginning—and Even Before
• Chapter 2 The Landscape and Its Signage
• Chapter 3 I Don't Think We're in Kansas Anymore, Toto: Diagnosis
• Chapter 4 Down the Rabbit Hole
• Chapter 5 Education—Joining the Highway
• Chapter 6 Are We There Yet?
• Chapter 7 Siblings, Spouses, and Other Passengers
• Appendix: Travel Agents
• References
• About the Author