We Live on the Autism Spectrum
Not too long ago I read an astonishing statistic that autism is on the rise and now affects 1 in every 150 American children — or, 1 in every 94 boys. An epidemic. Those numbers didn’t matter so much to me until late last year when my 4-year-old son, Ethan, was diagnosed with Asperger’s Syndrome (AS), one of the many disorders on the Autism Spectrum of Disorders (ASD).
I am a former Elementary Education teacher, so autism — and its cousins on the spectrum — weren’t exactly foreign to me. But, I did not consider myself an expert, either. In my six years of teaching, I encountered one boy with Pervasive Development Disorder. The only other “Autistic” child I met was a family friend’s nephew. How different those two boys were — something I now know to be very common in ASD.
Simply put, Ethan and others on the spectrum, have different brain functions than the rest of us, explains Dr. Catherine Karni, Assistant Professor of Psychiatry at UT Southwestern Medical Center and Medical Director of Outpatient Psychiatry at Children's Medical Center Dallas. Their perceptions of day-to-day events vary widely, not just from normal or “neurotypical” kids, but also from one ASD person to the next.
But, of course, we didn’t know any of this. Not for a long time.
‘A Strong-willed Child’
I gave up teaching after Ethan was born. Financially, we strived to make our situation work and Ethan’s early months (even as a newborn) were easy — until he hit about 15 months.
“Wow — what a strong-willed child we have,” I remember telling my husband Greg. As a toddler, Ethan was already talking clearly and had distinct interests. He loved shapes, numbers and letters and was showing an understanding of early learning concepts I didn’t expect to see for at least another year-and-a-half.
But daily life with Ethan wasn’t all fun and “teachable moments.” His temper tantrums were enough to make me never want to leave the house. At about 2 1/2, Ethan was unable to share toys in ways even younger children in our playgroup could easily understand. I started thinking, “What am I doing wrong?”
After a trip to visit my parents in New Mexico, my dad point blank asked, “Do you think Ethan has autism?” Ethan had started to display his fear of flying insects vocally during that trip. One summer evening on my parents’ porch, Ethan became hysterical — screaming and flapping his hands — as he watched moths fly toward the porch lights after dark.
I still didn’t believe it.
So I asked my mom, a special education preschool teacher, for her honest opinion. She felt as I did; Ethan had an unusual understanding of the world around him for his age, which could explain some of his eccentricities. Regardless, I scheduled an appointment with Ethan’s pediatrician and spoke candidly with him about the issue. He, too, felt that “autism” was not a word that described Ethan at the time, but certainly recommended that I watch him closely in the coming years.
And I did.
Somewhere along the way I realized that Ethan avoided eye contact, even with close family members.
These signs were all typical of ASD, says Dr. Lisa Elliott, a North Texas psychologist. “They don’t know how to navigate social situations,” she explains, adding that signs include limited affection and/or little interest in playing with other kids; speech delays, using toys in unusual ways (like lining them up); inflexible adherence to routines (rocking or hand-flapping as a result) and hyper-sensitive senses regarding sounds, smells, touch, taste and noises.
Elliott notes that parents who are highly concerned, despite what a pediatrician recommends, should “push for a neurology consult.” New research shows that when parents suspect something is wrong with their child, they are usually correct.
I wasn’t ready.
“I just can’t do anything right”
After a tumultuous move, Ethan began to settle into our new suburban Dallas home, nearer to his grandparents. We decorated his room in a solar system theme, but it still proved a tough place for him to claim as his own. His sleeping habits, which hadn’t been great previously, grew worse with numerous awakenings each night (despite trying every remedy in the books). Greg and I eventually took turns sleeping with Ethan in his bed so that at least one parent would get some rest.
We decided to enroll Ethan in a preschool that focused on guiding children in a structured, multi-age environment while supporting and encouraging individuality. After all, he was very advanced in many areas for his age. He was pre-reading, counting well into the double digits (often to 100), had tremendous memory for music lyrics and movie dialog and knew all of the planets and their order in the solar system. However, he was still having difficulty sharing and very commonly wanted the other children he played with to do things strictly the way he felt they should be done.
After six weeks, his teacher expressed concern that he was having trouble adapting and asked me for help.
Ethan’s teacher tried to utilize my suggestions and recommendations, but she wasn’t successful; the more frustration the teacher and director voiced to me, the more irritable Ethan became. He simply did not respond to the means they were using to try to compel him to “behave.” I now know that while we were trying to select the best environment for Ethan, we unwittingly placed him in the care of people who did not understand him, did not have the motivation to learn to understand him and completely undervalued him as an individual.
Finally, Ethan was placed on “probation” weeks before his 4th birthday. He began telling me: “I just can’t do anything right” and “I’m a bad boy.” Those were not words used in our home, and I doubted they were used at his school, but he was still feeling this way. During a conversation with them about my suspicion that Ethan could have AS, the director interjected quickly, “Oh, we have children in our school with Asperger’s. Ethan is nothing like them.”
He didn’t go back.
Pushing for Answers
Desperate for help, we contacted our city’s independent school district to find out what they could offer in terms of testing and possible diagnosis. I was pleasantly surprised with a quick reply and Ethan was scheduled for evaluation by a team dedicated to assessing the needs of preschool-aged children. (We had also considered a private evaluation/diagnosis.) We were asked to complete a detailed health, family and behavioral history.
According to Karni, “Most research now points to genetic etiology” as the cause of autism, although “it could be other factors in addition to genetics.”
I clearly stated on our questionnaire that I suspected AS. Like most parents, I hesitated at having my child labeled as “autistic,” but, as Karni confirms, “The earlier the diagnosis and earlier the implementation of services — the better the prognosis is.” According to the nonprofit organization, Autism Speaks, Autism Spectrum Disorders can usually be reliably diagnosed by age 3, although new research is pushing back the age of diagnosis to as early as 6 months.
Three weeks later … just days before Christmas … the evaluation team sent us the verdict: Asperger’s Syndrome. At the time, we had a house full of guests and all I wanted to do was sit alone to consider everything. I went from “Oh, thank God, a name for this! Now I can hit the books and find out what we can do to ‘help’ him” to “Will Ethan be capable of making lasting friendships? Will he ever have a happy, stable marriage and get to be a parent himself?”
We learned the diagnosis would entitle Ethan to special education services at our public preschool for children with disabilities (PPCD) under the Autism Spectrum Disorders category. Ethan also qualified for speech therapy due to his issues with speech “pragmatics,” such as eye contact and adherence to personal space.
Less than a month later, we found ourselves at our first Admission Review and Dismissal (ARD) meeting with Ethan’s new educational team. His PPCD teacher, the school’s diagnostician, speech therapist, general education pre-K teacher and the principal attended to weigh in on Ethan’s course: the program he would enter, as well as his Individual Education Plan (IEP), outlining the goals we would set for Ethan’s education in the coming months. Wow! This was what we needed — a team of professionals who were experienced and willing to work with Ethan — blemishes and all.
“The more inter-disciplinary the team you use — the better the outcome you will have,” assures Elliott. “Strengths can be used to overcome weaknesses. Your treatment needs to be individually driven based on your child.”
And there are so many treatments available, from speech and language therapy, occupational therapy and physical therapy to social skills training and applied behavior analysis (among several others).
Lost and Found
Mostly I'm even-tempered and happy to be working toward solutions and making life better for Ethan. But every now and then, I want to crawl into my bed and cry myself to sleep in the middle of the day. If these years are tough, I can only imagine how hard life will be when he's a teenager and he realizes just how atypical he can be. What is adolescence going to be like for him? I try not to let worries overwhelm me.
Instead I go into research frenzy. I order book after book about AS and ASD penned by experts around the world. Through the books, I’ve found countless stories of other children and adults on the spectrum. Some are affected similarly to Ethan. Some have far more profound issues. One of the most important bits I’ve gleaned is that everyday stimulus, which may be simply annoying to Greg or to me, may be downright physically painful to Ethan. As such, I tend to be more understanding if a smell, sound or taste doesn’t sit well with him. I’m also careful to cut tags out of itchy shirts or pants.
All of the kids I’ve read about have parents who went through similar challenges to those Greg and I are experiencing. They all somehow lived to share their insight with people like us. Like them, we live on the Autism Spectrum of Disorders.
In the beginning, Greg didn't want to believe Ethan was different. Now he can't deny it. One night we sat together and cried in bed because we were both harboring fears about Ethan's social skills.
Even with a neurotypical child, we would butt heads on many aspects of parenting and discipline. But with the daily stresses and challenges of parenting a child with special needs, Greg and I clash nearly every hour we’re all together. I’ll be honest: It is a marriage-challenge-to-the-core kind of tough.
Heather Robbins, a Dallas psychologist, affirms our dilemma, “Couples who care for special needs children have to deal with challenges that most marriages do not face.”
I won't lie and say we haven't discussed divorce — we have. But the bottom line is we're working on our relationship and trying to save it.
Fortunately, Greg is willing to attend counseling with me and look for ways to strengthen our marriage, while helping us be better — more effective — parents to Ethan with a focus on positive daily routines. Greg and I have to schedule that counseling time in, otherwise it wouldn’t happen. We’re just as busy as the next suburbia family.
Uncovering the Silver Lining
Ethan has been in the PPCD program for two full months now and is genuinely accepted as the funny, smart and amazing kid he is! While I’m not naïve enough to think that every teacher and every grade level will work out this way — for now I’m thankful.
Ethan is now able to start a sentence while looking someone in the eye. However, his gaze generally moves on after a word or two. This can be especially frustrating to us, especially when we are having a stern talk (about discipline issues) or even an important talk (perhaps about safety issues).
We've put off having another child, maybe for good. I'd love for Ethan to have a brother or sister, but adding the stress of a newborn to our already overburdened plate just isn't an option right now. Knowing that I may never carry another baby — may never nurse again — may never get to feel the overwhelming love for a baby simply breaks me. Most of the time I keep the pieces "taped" together so well that most people don't notice that I'm broken.
Currently, there are no effective means to prevent autism, no completely effective treatments and no cure. Prognosis varies greatly from one child to another. “Autism, Rhett’s Disorder, Asperger’s syndrome, Childhood Disintegrative Disorder (CDD) and Pervasive Development Disorder (PDD) are all on the spectrum and there are differing grades of severity,” says Karni.
Higher-functioning kids, like those with Asperger's Syndrome, can generally go on to lead independent, productive lives. Often, people with Asperger's do well in school (especially in subjects which they find interesting) and become scientists, engineers, physicists, etc. (Many speculate that Bill Gates has Asperger's Syndrome.) However, kids with more profound issues, on the "lower" end of the spectrum, will likely always need support and help. Some never get to the point that they can communicate effectively.
But Elliott is reassuring: “We need to recognize that these children are very special and capable of emotional love. This is not a diagnosis that is hopeless. We need to always remember there is hope.”
Maybe you are wondering, like we are, why is autism becoming so prevalent in our culture? There is extensive debate on the issue (try googling “autism causes”), but Karni believes “the numbers are on the rise due to broader diagnostic criteria, increased public awareness and environmental factors.” For instance, many more disorders such as AS, on the fringe of the spectrum, are being diagnosed, with more than 1.5 million American kids and counting finding the letters ASD behind their names. It is the fastest growing disability in the United States with a child being diagnosed every 20 minutes. You never think the stats will apply to you, but for us, it hit home.
Challenges or not, I thank God every day for blessing my life with Ethan. He truly is a gift. I continue to pray for patience and knowledge to help Ethan grow into a responsible, thoughtful, kind and above all — happy — young man.
I want so much for this sweet, passionate 4-year-old. He deserves so much.
Leigh Attaway Wilcox is a freelance editor, writer and proud mom to Ethan. She also writes children’s books; Leigh’s first book — ALL BETTER — was published in 2007 by Piggy Toes Press.