Autism, autism spectrum disorder, ASD…so many terms have become common enough to be part of everyday language. Acronyms swirl around us. We have alphabet soup for every discipline from architecture to urology, not to mention abbreviations people started creating to communicate more quickly via text, DM, or email. A relative sent me a comment after reading my first post, saying he “knows so little” about autism. I think many people can identify certain traits that are common to people with autism, but I think it is harder to verbalize what Autism Spectrum Disorder means. Is it singular or plural? Autism Spectrum Disorders.

I had to look it up. The CDC website on autism lists Autism Spectrum Disorders (ASDs) as “a group of developmental disabilities that can cause significant social, communication and behavioral challenges.” (Free Materials on Developmental Disabilities - CDC, 2023)

 The Autism Research Institute (ARI) acknowledges that the use of the word “spectrum” in the description indicates that “autism appears in different forms with varying levels of severity.” Further the website describes developmental deficits and atypical symptoms that appear in two areas:

1. Social communication and interaction
2. Behaviors, interests, and activities that are restricted or repetitive.

I have a bachelor’s degree in psychology. I started college at 25, when Aaron was almost 4 years old. I was motivated to learn about my little boy, seeking out classes in the Departments of Psychology and Human Development. I took classes about child development, basic psychology, and abnormal psychology.

I pulled out a now-ancient textbook Behavior Disorders of Childhood, 3^rd Edition, written by Rita Wicks-Nelson and Allen C. Israel. In a chapter about Autism and (Childhood) Schizophrenia, the authors mention Dr. Leo Kanner, an American psychiatrist who was the first to outline a description of what used to be called “early infantile autism.” In his 1943 publication, Dr. Kanner concluded that “of particular importance were communication deficits, good but atypical cognitive potential, and behavioral problems such as obsessiveness, repetitious action, and unimaginative play.” (Israel, 1997) He emphasized that the fundamental disturbance in development was demonstrated by “an inability to relate to people and situations.” (Israel, 1997) Parents he interviewed for his study described their children as “self-sufficient”, “like in a shell” and “acting as if people weren’t there.” (Israel, 1997)

Dr. Kanner coined the term autism, which is a combination of two words. The Greek word autos means “self” and the suffix ismos, which means “a state of being.” (2023) By applying this term, Kanner meant “an absorption in the self or subjective mental activity.” (Israel, 1997)

The study and understanding of autism, or ASD, has come a lightyear since 1943. Much has changed, including the terminology we use to discuss people affected by ASD. One thing that has not changed is the preferred “treatment.”

The only recognized treatment for autism is early intervention. As soon as a baby or child is diagnosed as being on the spectrum, recommended therapies should begin right away. It is important to initiate speech and other therapies to begin identifying how a baby learns most effectively. Being on the autism spectrum means the child is not able to learn the same way a typically developing child does because he or she is having difficulty making sense of their environment. Individualized therapy—as early as possible—offers the child the best hope of adapting to the world. Such interventions help educators learn the individual strengths and challenges facing the child, and what adaptations will help him or her function in the world and, ultimately, the classroom.

For this reason, I am a huge advocate of well-child checkups for every child.

Assuming childbirth goes as planned, and there are no complications for the infant, the new baby will be seen in the clinic 3-5 days after birth. After that, there is a schedule for well-baby checkups that is recommended by the CDC and the American Academy of Pediatrics (AAP). Your healthcare provider will ask you to strictly adhere to visits at 1, 2, 4, 6, 9 and 12-months of age. In my mind, the developmental and health screenings performed during these appointments are just as important as the vaccinations administered at these visits.  Before each visit, parents are asked to fill out a questionnaire about what their baby is learning to do as the days and weeks go by.

In our world today with our ability to access the internet, a wealth of knowledge is within our fingertips or literally in our back pockets in the form of a smartphone. There are apps and electronic checklists available to download to explore developmental milestones, and age-appropriate activities to choose from for fostering growth and development. These sources identify key milestones to watch for, helping distinguish things that may warrant further discussion with a healthcare provider. The CDC has an app for tracking infant development and what baby should be doing throughout the first year of life. The app is found at http://www.cdc.gov/MilestoneTracker and can be downloaded, with versions compatible with Android or iPhone Smartphones.

One of the best places to learn about infant development is from the doctor at regularly scheduled well-child checkups. Healthcare providers remain up to date with current information in terms of child health and development. I encourage people to trust what their doctor tells them about their baby’s development. It is research-based and good information to integrate into parent-child interactions as you engage with and teach your baby.

During my pregnancy in 1991, I chose to obtain my prenatal care with my family physician, Dr. Emtman. I was 21 when I became pregnant. I was young. I had no chronic health conditions. I was slim and fit. While I faithfully attended each prenatal appointment, I guess I didn’t comprehend the added value of seeing an obstetrician.

 At that time, an obstetrician probably would have offered an ultrasound during my pregnancy, but it was not an obstetric standard at that time. Some of my friends seeing obstetricians were having ultrasounds, and I asked my doctor if an ultrasound was indicated in my case. I was told it was not necessary and was typically reserved for complicated pregnancies to rule out (or rule in) problems. I was perfectly satisfied with this explanation. I knew I was healthy and that my pregnancy was progressing as expected. There were no apparent complications, and I was expected to deliver vaginally around the first week of November.

I wouldn’t say I regret the decision to forego the ultrasound. In fact, I also opted to do without the available testing to rule out developmental or genetic abnormalities, such as amniocentesis.  I told my doctor that such testing would be an unwarranted expense since, regardless of any fetal abnormalities I planned to carry my baby to term. It was against my moral and religious upbringing to ever consider terminating my pregnancy if the baby was determined to be anything other than perfect.

Plus, I had decided I wanted to find out the sex of my baby the old-fashioned way.

I don’t know whether an ultrasound would have revealed the craniofacial abnormalities that were immediately apparent to me when I first held Aaron.

Six weeks prior to my due date, Aaron dropped low into my pelvis. I felt uneasiness about his positioning. In my mind, I envisioned him as wedged in my pelvis.  It was as if his head was pressed against the left side of my pelvis, with some portion grinding against my pubic bone. It felt like his butt was wedged inside my pelvis, crammed against the inside surface of my right hip bone.

It didn’t seem quite right.

Everything hurt. My intuition told me that my baby wasn’t moving enough. He seemed trapped. I experienced very little fetal movement in the last month of pregnancy. Walking and sitting were not just uncomfortable—every activity caused unrelenting pain. Aaron had the hiccups at least three times a day and the location I felt that sensation never changed in the last month. He just wouldn’t move. I wondered whether he could move.

I was afraid of complaining too much. I was inexperienced, and every time I mentioned my concerns to other women, they discounted my complaints as being the normal aches and pains of pregnancy. I believed them. The repeated bouts of hiccups assured me my baby was alive, so all I could do was wait. I don’t remember sharing this unease with Dr. Emtman, especially my concerns about his positioning until after Aaron was born.

The due date of November 7^th came and went, and I was in as much pain as ever. Though it was not formally diagnosed until my second pregnancy six years later, I was also experiencing intrahepatic cholestasis of pregnancy.

Chole- is the Latin word for bile, which is synthesized by the liver; stasis- comes from the Latin for static, or stagnant. General cholestasis is the failure of bile flowing from the liver and may be the result of obstruction or plugging of the bile ducts. In some cases, a bile duct may be blocked by gallstones or, in the case of cancer, by a tumor. Abnormal bile flow causes waste products in the blood—normally excreted in the bile—to accumulate. Such accumulation can lead to jaundice and liver damage.

The liver is an estrogen-sensitive organ. In a normal pregnancy, bilirubin excretion and resulting bile flow is mildly affected. However, in cholestasis of pregnancy, hepatic solutes and secretions are significantly impaired. Symptoms typically appear during the second or third trimester.  Serum bilirubin, or levels of bilirubin in the blood stream become elevated due to accumulation.  As bilirubin accumulates in the skin, the skin becomes unbearably itchy. Urine darkens to brownish orange, as though the liver were failing.

Women who develop cholestasis of pregnancy may not tolerate hormonal forms of birth control, which prevent ovulation with an exogenous or external source of estrogen. The estrogen-containing birth control may trigger cholestasis just like when the woman was pregnant.

For the last three or four weeks of my pregnancy, I itched insufferably. In my sleep, I scratched until I had ripped sores into my lower legs. Cholestasis of pregnancy apparently does not present danger to the fetus but may require early delivery.

Since my cholestasis of pregnancy was not diagnosed until my second pregnancy, in 1997, I just suffered through horrendous itching.

I felt uneasy the first time I held Aaron. Looking back, I can’t say it was anything more than mother’s intuition. He was a robust, healthy boy at 8 pounds 10 ounces and 21 ½ inches long. He had a barrel chest that starkly resembled that of his 6-foot 7-inch father.  

However, his head was misshapen. His face was less than symmetrical, noticeably fuller on one side of his face, while the right side of his jaw was slightly recessed. On the opposite, back side of his skull, there was a pronounced flattening. I thought it looked like his head had been held in a vise, impeding the growth of the jaw and skull on opposite sides. The asymmetry of Aaron’s head and jaw fit the fetal orientation I had conjured in my mind based on the obdurate pelvic pain I had felt.

To my further unease, when I asked the nursing staff why his head looked like that, they tried to reassure me that it was due to his difficult delivery. They wanted to convince me that his head would round out and be perfectly normal. I didn’t believe them. I wanted to accept their explanations, but I could not quiet my fears that they didn’t know what they were talking about.

We spent an extra day in the hospital because of difficulty nursing. He couldn’t latch onto my nipple and was having trouble maintaining his blood sugar. With lots of coaxing and assistance from a lactation consultant, we had some success and were sent home the morning of the third day. Later in the day, I went back to the hospital, crying. I hadn’t been able to get Aaron to latch on and was frantic that he would starve. We went through the same motions of sitting in a quiet room, cradling him. With one hand, I was to pull Aaron’s lower lip down, exposing his gums. With a little more pressure, his lower jaw dropped enough to display his little tongue. With the other hand, I gathered my breast in my hand and placed the nipple in his mouth, tickling his tongue.

I repeated this process over and over. When the specialist sensed my frustration, she would reach over and grab me with her big, old hand, demonstrating the technique. Usually, after 20-30 minutes of trying, Aaron would finally latch on and feed. I had constant anxiety that I wouldn’t be able to do it. We went home again. My mother would sit with me each time, watching me struggle through the protocol for 20 minutes before each feeding. I remember asking my mom what I was doing wrong.

“I wish I could help you,” she said, “I nursed six babies. Even with my first baby, I have no memory of this kind of struggle. My babies latched right on.”

My mom was very supportive. She sat with me as long as it took and reassured me that I was doing everything right. She remained optimistic, insisting Aaron would catch on with time.

“Neither of you have done this before,” mom said. “Just keep doing what the lactation specialist said. You guys will figure it out.”

She was right. By the end of a week, he was latching on reasonably well. Our success was short-lived. By the time he was six weeks old, Aaron was clamping down on my breast. He wasn’t just biting me. He was clenching his teeth and all the muscles of his neck. Even his shoulders would exhibit this rigidity, and he would shake his head tremulously. It almost seemed like he was overly excited. He would do it for four or five seconds. As quickly as I could, I would slip my finger in his mouth, breaking the suction to release my breast. Then, I would try getting him to latch again.

It was so difficult for me to understand. I probably had unrealistic expectations of nursing being automatic and easy. I was overwhelmed by the difficulty and with how time-consuming it all was. Soon, I would have to return to work, and I didn’t know how I would handle it all. So, I stopped nursing and fed him formula. It wasn’t an uncommon decision at the time. New moms weren’t given breast pumps or encouraged to pump and freeze their milk. There was much less awareness and emphasis on breastfeeding. Nonetheless, it was a huge blow to me. I knew it was better to breastfeed, if you could. And, I had wanted to. I lacked confidence to discuss the problem with Aaron’s doctor; it was just easier to stop trying.

It wasn’t until years later that I learned suckling difficulties are sometimes a sign of developmental deficits in an infant. Certainly, not all babies that have a hard time learning to breastfeed have cognitive or developmental problems. There are lots of things that can lead to difficulties with feeding, including mechanical issues that make it hard for a baby to generate the tongue movement that causes milk to be expressed. There are many things that are easily solved, working with a lactation specialist or occupational therapist. It just involves troubleshooting to identify the main problem and taking the necessary steps to eliminate the issue.

However, a high percentage of babies with cognitive or developmental deficits have difficulty nursing.

Despite all of this, we gradually slipped into a routine. I got up at 6am to feed Aaron. He never stayed up very long. Sometimes within two hours, Aaron had had enough. He fussed and cried until I fed him again and put him to bed.

He was the best sleeper anyone ever saw; he slept solidly each morning for a full two hours. In fact, his naps were regular: sleeping a solid 2-hours, mornings and afternoons. Never up more than a couple hours at a time and sleeping through the night by 8 weeks of age.

I remember returning to work when Aaron was a month old. Another coworker, Melanie, had given birth within a few days of me, but stayed out on maternity leave longer than me. I had brought Aaron in a half dozen times to show him to my coworkers. Each time, we paraded him around in his car seat because he was sound asleep.

I remember the day Melanie came to the office when our babies were about 8 weeks old. She brought her baby with her when she came to inform our manager that she and her husband had decided she would quit her job to remain home with their new baby. One of the assistant managers, David, teased me: “Look, Beth. Melanie has a baby with eyes that open.”

I laughed along with the others, but my stomach felt queasy with the worry that—somehow—my baby was different from Melanie’s—or any other baby I had seen.

In January 1992, I took Aaron to his 2-month well-child check-up. While waiting in the waiting room, I filled out an Ages & Stages Questionnaire (ASQ). The ASQ will be part of every well-child check-up. While children develop at their own pace, it is important to assess whether the child is generally meeting developmental milestones. During the first year, these milestones include:

• Smiling intentionally (on purpose)
• Sitting without support
• Waving goodbye
• Pointing at an object
• Moving an object from one hand to another
• Crawling between 6 to 12 months

I was instructed to answer the questions on a 0 to 12-month questionnaire. I was told to keep answering questions until I had answered “No” a total of three times. The questionnaire was kept in Aaron’s medical chart. Each visit—at 4, 6, 9-months—I was to resume answering questions on the same sheet. I was supposed to keep going until I accumulated three No’s again. Each time, I remember being pained by how quickly I reached three negatives and had to stop.

At two months, some social and emotional milestones include:

• Calms down when spoken to or picked up
• Looks at your face
• Seems happy to see you when you walk up to them
• Smiles when you talk to or smile at them

Language and communication milestones include making sounds other than crying and reacting to loud sounds. The sounds babies make—cooing, chattering, and babbling—are important precursors to speech. An infant’s reactions to loud or sudden sounds will identify whether the child’s hearing appears to be adequate to support speech development. A lack of appropriate responses to sounds is a crucial thing to identify as soon as possible to permit adaptations to support hearing with devices and integrate signing into speech development, when necessary.

By Aaron’s 8-week well-child checkup, he was behind in developmental milestones. He had a strong grip and appeared physically healthy. Nonetheless, it was as though a veil divided us. He did not make eye contact; at 2 months and beyond, our eyes never met, triggering recognition and smiles from my boy. As the months passed, other milestones remained elusive. He did not point at things or make motions to draw my attention to something. When—by the time he was two—he began pointing, he gestured with his entire arm. He lacked the dexterity to use his thumb to clasp his second finger to point with his forefinger.

I understood that Aaron was behind and waited patiently for each doctor’s visit to reassess his developmental progress. I was able to accept that he was developing at a different rate, but trusted he would eventually get there. One thing, however, was truly inexplicable to me: he was tactilely defensive.

We often speak of five human senses: sight, smell, hearing, taste, and touch. The human Sensory Processing System is vast and complicated. Different types of receptors in the skin respond to various stimuli: pressure, vibrations, temperature, texture, and pain. Since receptors are highly specialized, each type reacts to one type of stimulus.

Sensations occur when neural signals from receptors in the skin reach the cerebral cortex of the brain. The cerebral cortex interprets the sensations and sends a signal back to the receptors, which results in perception—what we feel.

The word tactile refers to sensations that pertain to the sense of touch. Saying that someone is tactilely defensive indicates poor tolerance of certain stimuli that are registered by receptors in our skin. The perception of a sensation may be so unpleasant that it causes an individual to avoid the sensation. Over- and under-reacting to tactile stimuli are both common in children with ASD.

Place your hand on a tabletop. As your hand makes contact with the surface, you instantly become aware of many sensations. You sense a cool, hard surface that doesn’t conform to your hand. If the table is clean, it feels smooth to the touch. Can you feel any crumbs, dust or dirt on the tabletop?

Your brain is making sense of signals from skin receptors. The signals sent from your brain, back to your hand allow you to perceive whether the stimulus is benign, or safe, or whether the stimulus needs to be avoided.

From the earliest days of Aaron’s life, certain behaviors and reactions seemed all but typical to me. He cried when I attempted to swaddle and cuddle him. Following his baths, my instinct was to wrap him up in a towel and hold him close. While the water soothed him, bundling him in a towel seemed to overwhelm him: he would scream and cry as though I were burning him. I quickly learned to blot him dry as quickly as I could, dress him, and let him lay quietly in his crib or on a blanket on the floor.

He had such a serious little face that stared straight forward, unblinking at times. Once, in those early months, when I was carrying him out to the car, I caught him staring at the sun on a brilliant day with blue skies. I was alarmed. I was squinting from light sensitivity, but he appeared unphased. I quickly covered his eyes and ducked him into the car. Thereafter, I always watched him carefully, determined to prevent him from continuous sun exposure to his eyes.

He could not tolerate holding or rocking. Soon I would also discover his aversion to loud sounds.

At that time in my life, I was trying to sort out my professional goals. I had been taking piano lessons on the WSU campus, studying with the intention of applying for a piano performance scholarship. One morning, I placed Aaron in his rocking car seat next to me, while I sat down to practice the piano. It was impossible. I had imagined he would find it soothing. I envisioned Aaron resembling my childhood Momma Cat who had always perched herself atop our old upright piano. Momma Cat had sat for hours on the piano top, eyes contentedly closed, purring her approval as I practiced. Not so with Aaron.

The first attempt was a confusing, but thorough failure. I had not played through the first page of music before Aaron began fussing incessantly. I soon gave up playing and picked him up. But that didn’t seem right either; he continued his fussing. It was a real challenge to identify ways to soothe him.

One Sunday, I was walking the floor with Aaron at church, as he cried and fussed. A well-meaning friend, Marv, was positive he had the perfect trick. He asked if he could show me something that “always worked” with his infants. Sure, why not, I thought. It couldn’t hurt. Marv took Aaron from me, turning him on his belly to stretch the length of his forearm. Supporting his head with his large hand, he simultaneously bounced Aaron while swaying back and forth, rotating at the hips.

I remember feeling surprised at how quickly Marv gave up. I wasn’t aware of Aaron crying any more urgently than he had been before, but his persistent cries were clearly unexpected. Mere moments later, Marv handed Aaron back to me with mutterings of “…huh, it has always worked before.”

This became the mantra of Aaron’s life. Fascinating. Interesting. I’ve never seen anything like it. All the comments of serial specialists moving in and out of our lives. I became acquainted with insurance companies, prior authorizations, referrals to specialists, and assessments. Fortunately, insurance coverage was amazing in the 1990’s. My pregnancy cost me ten dollars. I had to pay a $10 copay for the first prenatal visit, after that, all visits were free. Including the hospital visit! Since I had such good insurance, at least compounding medical bills weren’t one of my problems.

I also had a wonderful support system. I lived in Pullman, Washington—a college town of fewer than 30,000 people. My parents and two brothers lived within ten miles of me. Both of my parents kept telling me I was amazing—even though I didn’t feel amazing. At least I had people around me that loved me and welcomed my numerous visits to their home. I was at my parents’ home constantly with Aaron. I needed their reassurance, and facing the unknown was easier in their presence.

The stories of isolation experienced by parents of children with disabilities are legion. The struggle of trying to meet the needs of typically developing children is exhausting. The increased worry, stress and uncertainty experienced by parents of children with special needs frequently leads to anxiety, depression, marital strife, and even divorce.

While one of my primary goals in starting this blog is to share my hope and optimism with people who live difficult lives, I cannot write anxiety and pain out of my story. Being Aaron’s mother has not been, and never will be easy. But, it brings me joy—and it always has. To live hopefully is not to live sheltered from sorrow. We all experience grief. We all face disappointment. Many of us have experienced dark depression that alters our thinking and colors our perspectives.

My message of hope is that sorrow, grief, disappointment, or isolation—all of them are fleeting. It doesn’t feel that way during the midst of the trial, but even in the depths of difficulties, we can choose gratitude.  There is a well-known adage: a grateful heart is a happy heart. Nothing in my journey with Aaron has ever prevented me from rejoicing at small victories or kept me from appreciating the beauty of a new day. The depth of my struggles led me to cherish the loving relationships I had with my family, to honor and appreciate an upbringing that allowed me to embrace knowledge and view challenges as a venue for personal development. I have even found I am grateful for the things I learned from years of anguish while living with mental illness and the consequences of abuse: how else might I have learned to love and strengthen others living with similar problems.

No matter how bad it gets, dig deep, reach for others, seek solace from nature, strengthen your faith…do whatever it takes to keeping going. Move steadily forward, trusting that our minds cannot conceive of the good that follows effort or the hope that supplants misery.

References

Free Materials on Developmental Disabilities - CDC. (2023, June 25). Retrieved from Center for Disease Control - ASD: https://www.cdc.gov/ncbddd/developmentaldisabilities/freematerials.html

https://www.autismepicenter.com/history-of-autism.html. (2023, may 28). Retrieved from Autism Epicenter: https://www.autismepicenter.com/history-of-autism.shtml

Israel, R. W.-N. (1997). Ch. 12: Autism and Schizophrenia. In R. W.-N. Israel, Behavior Disorders of Childhood, 3rd edition (p. 299). Upper Saddle River, New Jersey: Prentice Hall.

Milestone tracker. (n.d.). Retrieved from CDC: http://www.cdc.gov/MilestoneTracker