Part I: “‘What’s Wrong With Me?’-- Growing up with Autism” by C. Burr

 

Christina at age four

My daughter gave me permission to tell her story.  We both look forward to the day when others begin to understand autism and the bullying of autistic children (or any child) at school and of autistic adults (or any adult) at work will cease.  -- C. Burr

I knew something was different about my third baby.  Whenever I cuddled Christina, she didn’t readily smile at me like the boys did when they were infants.  At nine months, she didn’t coo or babble or play with her toes.  She was rarely content. She fussed and cried when there was too much activity in the house--and with two older brothers, there was plenty of noise. 

My concerns grew when Christina didn’t crawl until she was fifteen months old, didn’t respond to my voice when I called her name and never pointed to a cookie, a glass of milk, or anything else she wanted.  Even at two, she toddled into the kitchen and shrieked, waiting for me to guess whether she was hungry or thirsty. 

Because Christina was practically nonverbal as a toddler, numerous people suggested that her brothers talked for her.  I wasn’t convinced.  She spoke only a few words by her second birthday, rarely made eye contact, and often acted as if she didn’t hear us.  

Generally frustrated during playtime, Christina could become enraged when she tried to dress her dolls or put them in a stroller. When I ignored her tantrums—the discipline that worked with the boys--she spiraled into a tornadic fury.  Her pediatrician advised locking her in her room and with a soothing tone, speak to her through the closed door. My attempts, however, triggered louder screaming, kicking the door, and banging on the walls for over an hour.  The second and last time I tried the doctor’s locked-door suggestion, she screamed louder, kicked the door harder, and threw toys. She sent a glass penny bank and a small wooden chair crashing into the wall.  I could clean up the splinters and broken glass but what could I do for my daughter?

Besides uncontrollable temper tantrums, Christina displayed other behaviors that concerned me.

Sometimes, she crawled off to sit in a corner of our living room and flapped her arms like a fledgling or swayed her body back and forth or bumped her head against the walls.  Her actions reminded me of severely autistic children I had seen in films during my Child Psychology class. These institutionalized children displayed “stimming,” or self-stimulating, repetitive behaviors for hours. I wondered if my little girl might have a mild form of autism, but the experts I spoke with dismissed that idea. 

With my maternal instincts guiding me, I began hugging Christina tightly when she was upset.  Sometimes I would play soothing music and rock her while tickling her back, even though I had been advised by great-grandmothers that rocking a child would "spoil" her.  Within a few weeks when frustrated and distressed, she began holding out her hands to me and asking for a “hug”–one of the few words she would utter.  Soon, the destructive behavior lessened and the head-butting and other odd behaviors ended—at least in my presence.*

I was a stay-at-home mom and had read books on child development during my undergraduate classes in 1974.  I devoted hours to Christina's well-being by observing her behavior and applying different methods to gently guide her.  I searched for answers and talked to experts. However,  because psychologists, special education teachers, and social workers of the 1980s and 90s had not yet determined that there were degrees of autism, Christina was labeled as “immature” with significant delays in expressive and receptive language. She could catch up, they thought, with a lot of work and extra help. 

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Throughout school, Christina scored near the twenty-fifth percentile in most subjects, despite my willingness to stay at home and give her extra attention.  We enrolled her in special needs pre-kindergarten classes when she was three and four years old.  I read to her every day, introduced various puzzles and games, and worked with flashcards as instructed by a speech pathologist. Even with my nurturing and dogged attention to her needs, her progress was slow, and at age six, she had to retake kindergarten.  She looked “normal” but learning new skills and socializing challenged her.  

Christina discovered she was “different” from other children around third grade when she was assigned a para to usher her into the hallway to take tests and to sit beside her during class. Soon, classmates began to disengage from her during conversations and walk away. Even in high school, girls wouldn't speak to her when she ran up to greet them at after-school functions, at the mall, or in church. She cried and lashed out at her brothers and me after she was bullied at school, which mostly took the form of ostracism. Occasionally, however, girls she thought were her friends spoke cruelly to her, which caused greater anxiety and acting out. Through hysterical sobs, she often asked, “What’s wrong with me?” 

A compassionate psychologist nurtured Christina and me through her teens, which were filled with angst and impulsive decisions that could have been disastrous.  The label “Attention Deficit Disorder” was tossed around. Medication for ADHD accentuated her anxiety and proved unhelpful, which didn’t surprise me because she was never “hyper” and was determined to learn. She could remain focused on her homework and know the answers, but any change in wording on a test derailed her.    No matter how hard she focused, she could not learn simple math, comprehend multiple instructions, or communicate with her peers without sounding “weird” —basic skills necessary for fast food employment, a job she could not manage as a teen.

 After graduating from high school with significant tutoring and adjusted grades, Christina discovered that the communication burdens she had known as a child followed her into technical school.  However, she persisted through multiple attempts to pass finals and state exams. She earned three certificates: Certified Nurse’s Aide, Medication Aide, and Office Administration.   Unlike school, she would learn, there were no paras or accommodations for a young woman with minor “learning disabilities” in the world of low-paying jobs. The understaffed state agencies promised but did not deliver assistance for job placement for a young woman with mild expressive and receptive language difficulties.

By the time Christina reached her 35^th birthday, a battery of tests and the history I provided confirmed what I suspected years ago—my daughter grew up and continues to live with Autism Spectrum Disorder (ASD).  For the first time in her life, Christina did not feel “stupid” and was relieved to have an answer for what was “wrong” with her.

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I frequently tell my autistic daughter that she has taught me more than any person I know about humility, persistence, and letting go. 

I learned to let go of my dreams for her to become a parent or a successful professional. I let go of American values that were never a fit for her, such as “If you try hard enough you can do anything, become anyone.”  Christina will never graduate from college or become a doctor, an astrophysicist, or a lawyer, but she persistently strives to be a compassionate, hardworking, and honest person.  

Because of Christina, I’m more patient with the person standing behind a fast-food counter who struggles making change when handed a twenty-dollar bill.  I learned that I can’t control her future or continue to advocate for her when she is unfairly treated on the job. 

 I’m also content with her and her spouse’s decision not to have children.  “What if they were like me?” she asked. “I wouldn’t want my children to grow up with autism—it was too hard.”

 submitted by Elder C. Burr

Part II  "The Metamorphosis of My Autistic Daughter" describes more characteristics and behaviors that challenge Christina as an employee and the benefits of hiring someone with autism. 

* My hugs worked for Christina, but other over-sensitive, autistic people might find Dr Temple Grandin’s “hug machine” a better option.  Grandin, who is autistic, understands from personal experience how deep-pressure stimulation can calm people with autism. 

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