Part II: "The Metamorphosis of My Autistic Daughter" by C. Burr

 

I have permission from Christina, my mildly autistic daughter, to continue her story in the second part of a series (See Part I: “What’s Wrong With Me? Growing up With Autism.) 

Writing about my daughter’s struggles with autism has not been easy--it releases old wounds and reminders of embarrassing behaviors.  Her narrative, however, also reveals strong and virtuous characteristics that she developed over time. I’m continually amazed at Christina's persistence and creativity as she adapts to a world that doesn’t understand autism.

According to the Centers for Disease Control, one out of thirty-two children were identified with Autism Spectrum Disorder (ASD) in 2020.  If Christina were six years old today, she would have probably received a diagnosis of ASD and appropriate therapy when she was a toddler.  In 1990, however, only one child in five hundred was labeled "autistic," with violent behaviors requiring institutionalization.  Christina's mild behaviors--repetitive movements, rare smiling, not pointing to objects she desired, and more--were not considered significant during her development. [1]  Experts told me that she would outgrow those behaviors, social awkwardness, uncontrollable outbursts, and delayed speech.

Christina's communication and motor development lagged a year or more behind her peers.  In elementary school, she avoided skipping and jumping and she ran as if weights were strapped to her ankles.  Because she is left-handed, she struggled as a child with writing and using scissors--even those designed for lefties.  (10% of the general public is left-handed compared to 28% in the autistic population. [2] 

I awakened to Christina's sluggish motor development when she performed at a dance recital with other kindergarteners. She looked adorable in a white poodle costume and was noticeably taller than the four and five-year-old girls surrounding her. However, her confusion and lack of coordination were obvious from the start.  She turned to the left when the others went right and shot her arms up when the other team members put their hands to their waists.  She looked lost.  After the routine, the girls laughed and talked amongst themselves. When my daughter tried to communicate, her speech was loud and nonsensical.  

Physical and social awkwardness followed Christina throughout elementary school, but she never gave up trying to talk to her peers and develop friendships.  Two girls in her class became good friends.  One of them lived two blocks away and visited frequently.  Giggles radiated from her room as they played with Cabbage Patch dolls and Barbies and danced to "Achy Breaky Heart."

Sixth grade ushered in new games and hurt feelings.  Her best friend avoided her and spread cruel rumors--something most of us went through as teens.  Understandably, Christina was devastated by the betrayal.  One day she refused to go back to school.

Then, she did something rather remarkable for a twelve-year-old with learning disabilities (and undiagnosed ASD).  After the emotional outbursts settled down and without my knowledge, she looked up the phone number of a Christian school on the other side of town and made an appointment with the principal. She reasoned that she would be treated better among Christian children.  Impressed by her rationale and determination, we were willing to let her try it.

Unfortunately, the new school could not accommodate Christina's special educational needs nor could she establish friendships.  By seventh grade, she returned to public middle school, where too many distractions created more anxiety and outbursts.  After she was lured into three separate and potentially dangerous situations, I made an appointment with a child psychologist.

Christina met with her doctor for four years.  He encouraged my husband and me to be patient with her hysterics, anxiety, and poor choices, which wasn't easy with a naive, impulsive teen who reacted to discipline with childish tantrums.  Fortunately, she responded to his mild demeanor and suggestions.  He encouraged us to place our daughter in a small public school (in a neighboring small town) that provided special education and a locked-door policy.  He looked me in the eyes and said I needed to teach her how to advocate for herself because finding and keeping a job would be tough for  her.

I always envisioned possibilities in Christina--that she could learn how to navigate through this unpredictable world, but I also understood that she needed our guidance and protection as she approached adulthood.  We had to be extra cautious of the teen years. I envisioned myself holding a glass jar, watching a caterpillar (Christina) inside, hanging on a clipped sprig of dill.  The jar protected her while she persistently munched on the stem and its flowers until her gangly body transformed into a chrysalis with a tough shell, which allowed a lovely metamorphosis within. At the right time--when she began emerging from the cocoon with folded wings--I would set the jar outside and watch her inch her way to the mouth of the jar and take off.  

---

Christina's tattered wings held strong while she navigated through various endeavors and she developed one of her strongest characteristics--persistence.  She persisted through high school, two technical school certificates, and two state exams for Nurse's Assistant and Medication Aide.  At twenty-six, she persisted until she graduated with an Associate degree in Office Business Administration.

While Christina pursued post-secondary education, she armed herself with copies of her IEPs explaining her learning disabilities and advocated for tutoring and for more time taking exams.  One time an instructor accused her of cheating, but Christina overcame her frustration and hurt feelings and made an appointment with the instructor.  I observed the meeting, never saying a word, as Christina calmly presented her case with evidence.  The teacher reversed her decision and gave my daughter the passing grade she deserved.

Reasoning, however, rarely succeeded in the numerous low-paying jobs she has had since graduating. After several employers or managers “yelled” at her for not comprehending instructions or not functioning as a multitasker, she tried to schedule meetings to calmly talk through the situation like she did with the instructor.  Her requests were usually ignored. Even when she explained her learning difficulties and wrote notes to her nursing supervisor for help, the notes ended up in the trash. She has been accused of making excuses when she tried to explain her needs and of overreacting when openly criticized in front of co-workers and patients.

When Christina was almost 35 years old, she was diagnosed with Autism Spectrum Disorder.

Since most communication is spontaneous, Christina, like many adults with autism, struggles with bizarre word usage, misunderstanding directives, and misreading nonverbal clues, such as facial expressions. After intimidating confrontations, she finds it difficult to control her tears and escapes to a bathroom where she can calm herself. 

Reading up to three books a month has helped Christina's vocabulary, but she has difficulty describing plots.  When she attempts to communicate a new thought or tell a story, her word choice seems out of sync.  She can sound uneducated; however, if given the time to express herself, she is quite clever.  She often misreads social cues.  A colleague who is concentrating on a project might appear angry to Christina and she will obsess for days that the person is mad at her.  

There is no cure for ASD.  Christina manages her disorder by joking about a misused word or taking a deep breath when talking to a disgruntled client on the phone.  Communication is challenging when supervisors and co-workers are as stressed as she is.  Like so many underpaid staff, Christina has bounced around the job market, working at over ten different offices, agencies, and facilities in fifteen years.  Despite her punctuality and diligence, her job performance reviews, which focus on production and multitasking, are often less than satisfactory.

---

Christina has been hesitant to mention her disorder in interviews, thinking the company may not hire someone with ASD. [3] However, after she is hired for a job, she becomes overwhelmed in an understaffed environment with too many directives, too many tasks, and too many phone calls. 

Despite challenging traits, Christina has typical ASD strengths, which she mentions in job applications and interviews:  She is punctual (lateness causes stress), remains laser-focused on a single task, and obeys rules.  She has above-average computer skills and is polite.  She has also learned to smile genuinely, to listen more, and to talk less.  And yet, these benefits are ignored during performance reviews that focus on increased production and multitasking, such as answering phones, while listening to multiple and conflicting directives, updating appointments, filling out forms, and other last-minute activities.

Can anyone truly multitask with consistent, positive outcomes?

Stanford psychology professor Clifford Nass claimed in a 2013 interview that multitasking among students and workers (even those without ASD) can harm concentration, creativity, and efficiency--"wast[ing] more time than it saves." [4] Christina would add to his assessment that multitasking can increase stress and anxiety, which is probably true for most people, but in someone with ASD, the noise and commotion are louder and more distracting.  

Even before she knew she had autism, Christina had asked for, but rarely received, sensible adjustments that could potentially create an environment with less stress for herself and her coworkers on the nursing floor or in an office: 

• Supply a manual with written instructions on how to do the job. 
• Write or text any changes to instructions and directives. 
• Provide a list of tasks in the order you would like them addressed. 
• If employers and managers have a complaint about job performance, schedule a meeting and make suggestions for improvement. Never scold an employee in public.

---

A while back, Christina and I experienced heartbreak—again. She thought she had been performing well at work and looked forward to a raise. When she called me, her voice was shaky and thick with disappointment as she explained how she suffered through a “bad review.”  There would be no raise and she was asked to improve her output.

With hurtful past experiences in mind, she never told the owners she had autism during the original interview or after two performance reviews. “I didn’t want them to think I was making excuses!” Christina said. She tearfully ruminated over the number of times she had been misunderstood at other jobs, the number of times she had to search for employment. 

“All I want is to work!” she said between sobs. “I want to work hard!”

Christina's anxiety increased over thoughts she might be fired, calling me daily to discuss her dilemma. If she searched for new employment would disclosure of her autism on an application prevent her from getting an interview? Or should she keep her ASD to herself and try harder to prove she was capable, which was her strategy when she interviewed for her current job?

At the end of the week, I answered the phone, expecting more of the same and wishing I could help her feel better.  But instead of a depressed tone, she was ecstatic: “This is the best day of my life!”

She explained how she asked for a meeting with two of her bosses to explain her disorder. After handing them documents confirming her diagnosis of ASD, their response was something she had never heard before.  They asked what they could do to accommodate her and agreed she could focus on one task at a time at a desk away from constant disruptions.  Their compassion and kindness moved her (and me) to tears.

“This is HUGE,” Christina said. “They understand me.  Finally, I’m working for someone who understands me!”

 

--written with Christina’s permission by her mom C. Burr

People with ASD struggle to maintain relationships; however, Christina will celebrate ten years of marriage with her spouse in May 2024.  Feel free to send an encouraging message in the "comment" section below.

 

[1] A list of autistic behaviors of infants and children can be found online.  https://autismsa.org.au/autism-diagnosis/autism-symptoms/signs-of-autism-in-babies/

[2] Sebastian Ocklenburg Ph.D,  “Left-Handedness and Neurodiversity: A Surprising Link,” Psychology Today website, Dec. 18, 2022. https://www.psychologytoday.com/us/blog/the-asymmetric-brain/202212/left-handedness-and-neurodiversity-a-surprising-link#

[3] It is illegal to not hire or fire people solely because of their ASD.

[4] “The Myth of Multitasking,” heard on “Talk of the Nation.” May 10, 2013. https://www.npr.org/2013/05/10/182861382/the-myth-of-multitasking

  Contact us if you would like to receive email updates or submit your original work.