⛔ Hurry Up & Wait: Greetings from the Autism Care Gap #1
Autism myths, insights & our superstar kid
Hurry up & wait
The morning after our in-person neuropsych evaluation, I woke up and immediately checked our medical portal. "Nothing yet," I reported to Beau. I made breakfast for Peach, who eats yogurt with green sprinkles every morning, then checked again. "Still nothing," I said.
"Robin, give it a few days," Beau said kindly.
"Ok, ok, you’re right," I agreed.
A scream pierced our calm. We rushed to the family room, tripping over ourselves and shouting, "Coming, Coming!" Peach was teetering on a kitchen stool that she had dragged to our floor-to-ceiling bookshelf. Aira, our one-year-old, crouched in her playpen. "Somebody messed up the order of the books! I can’t go to school unless they are fixed!" Peach yelled, yanking one book after another from the shelves, pitching them across the room
"PEACH," Beau exclaimed, "Peach, that's one!"
I turned to Beau and said sharply, "DO NOT put her in timeout, Beau. Her doctor specifically advised against 1-2-3 and timeout for kids with autism, she called it trauma-inducing!"
"But is she autistic?" he asked.
"I don't know, but we need to adjust our discipline tactics," I responded, unhelpfully. Ulysses landed with a thud next to Aira’s small body, and she burst into tears. "Peach, do NOT throw books at Aira," I said loudly, jogging to the baby and scooping her up.
"Don't raise your voice! It's overstimulating!" Beau warned me.
"Ok," I agreed, groaning as my favorite copy of Bluets grazed my shoulder.
"Peach," Beau said calmly, "please, we asked you not to throw books, please!”
Peach turned to us and paused. Her cheeks were blood red, eyes flashing, hair a sweaty, tangled mess. I opened my mouth and closed my mouth. I had nothing.
—
And we went on that way for weeks, in utter paralysis, oscillating between the whimsical antics of a toddler and intense, destructive meltdowns. Everything we had learned about parenting tilted sideways, leaving us stumbling in the dark for stable ground.
Parenting: you’re doing it wrong
Like most people, I learned to parent from my parents. They raised us wild and free, running the beaches of Florida and the forests of Ontario. The beauty of a life like this, of course, is that you grow up with autonomy, and develop confidence, self-motivation, and leadership skills largely unshaped by gender politics and social pressures (I’m the oldest of three girls and a gaggle of Canadian cousins). Our days were ours to define.
The flip side: if I had a meltdown, was over-stimulated, or struggled with social/emotional communication, I was largely left to manage those feelings alone. Meltdowns in our family home were the quickest way to clear a room. “Leave her be,” my parents often tell me with Peach, “you have to ignore it, put her in timeout.” Or when she trips and cuts a knee, or gets a nasty bug bite: “She’s a McIntosh, she’s tough. Don’t make it a big deal.”
I recounted this to the clinician conducting Peach’s evaluation. “Absolutely not, no, that method will simply not work with your child, you’ll traumatize her.” We were happy to let the “ignore it” technique go, as it never felt right for us anyway, but until we knew what was going on with Peach’s brain, we had nothing to replace it. We were utterly adrift.
Early intervention or bust?!
If paralysis is the primary state of affairs in this “hurry up and wait” care gap, nail-biting anxiety about getting one’s child into services before their fourth birthday is the second. Searching for solutions often leads to the dead-end advice that early intervention is critical for a happy life. Peach underwent her consultation and subsequent evaluation at age three—she turned four as we waited for the results.
As I mention in my “Busy Brains” post, we strongly suspected that Peach was autistic, given that she neatly fits the DSM-5 criteria. However, to access services such as behavioral therapy—which is one of the few interventions covered by insurance for autism spectrum disorder—an official diagnosis from a specialist is required.
A mentor of mine, who is the parent of a neurodivergent child, and a renowned pediatrician to boot, didn't mince words: "You're fucked" she said. "You're past the age for automatic qualification at California's Regional Centers but too young for school-based services. I hope your insurance is robust." It’s not.
I felt desperate and angry, frustrated at having to wait weeks for the results of a one hour evaluation, plus the six month wait to get that coveted appointment in the first place. The anguish of being told that you're already delayed in receiving services, while you count each passing day waiting for access, is beyond words.
The (dusty) canon
As an avid reader and consumer of information, combined with an ability to intensely focus, I countered this feeling of helplessness by asking our clinician for book recommendations. I messaged, "Give me anything, a textbook, a tome, just send me whatever the canon is and I'll devour it."
These were the books & website that her practice recommended:
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.). American Psychiatric Publishing.
Powers, M. D. (2000). Children with autism: a parent’s guide. Woodbine House.
Kranowitz, C. S. (1998). The out-of-sync child (1st ed.). TarcherPerigee.
Klass, P., & Costello, E. (2004). Quirky kids: Understanding and helping your child who doesn't fit in- When to worry and when not to worry. American Academy of Pediatrics.
Below are my initial learnings, insights & “how might we” statements (this is the way I approach problems, through a design lens, I can’t help myself).
Debunking commonly held myths
❌ Myth: Autism is a mental illness.
Autism is a complex neurological condition present from birth. It is a neurodevelopmental disability, characterized by challenges in social interaction, communication, and restricted and repetitive behaviors and interests.1 It is also multifactorial, indicating that there is no single gene or cause.2
❌ Myth: All autistic individuals have the same symptoms and abilities.
Autism is a spectrum disorder, meaning it manifests differently in each person. My sister Jacqueline, who holds a doctorate in occupational therapy and works with autistic kids, constantly reminds me: If you've met one autistic person, you've met one autistic person.
❌ Myth: Autistic people lack emotions and empathy.
Many autistics experience and express emotions deeply, but they may express them in non-traditional ways. Some might struggle with interpreting others' emotions, but this doesn't equate to a lack of empathy.
❌ Myth: Autistic people don’t want friends.
Many desire social connections but might find social interaction challenging due to difficulties with social cues and communication.
❌ Myth: Strict parenting or poor maternal bonding causes autism.
These outdated notions have been debunked. Autism is primarily understood to be caused by genetic and neurological factors, not parenting styles. Amen.
Insights & exploratory questions
👉 How might we flip the gloom & doom script?
The provided literature often casts ASD in a negative light, using terms like “rude,” “inflexible” and “robotic.” Why not assertive, determined, and methodical? How might we shift this tone of condemnation and fear mongering to one of compassion, curiosity and empowerment? While still acknowledging the very real challenges that often attend an ASD diagnosis. As I read I grew increasingly offended; at some point I started crossing out words and replacing them myself!
👉 How might we focus less on how an autistic person behaves, and more on how they feel?
Research shows that autistic individuals are far more susceptible to eating disorders3 and substance use disorders.4 A 2019 meta-analysis5 found that autistics are four times more likely to experience depression than those who are allistic.
Prioritizing an autistic person’s internal experience over external perceptions seems to be a crucial yet glossed over aspect of providing effective support. Our goal with Peach is not to make her appear “normal.” Our goal is to reduce her suffering, increase her capacity for joy, and develop strong self esteem. If she wants to spin in circles and wear the same Elsa costume every day, so be it! You do you, Peach Pie!
👉 How might we develop agile frameworks and solutions that keep pace with emerging neurotechnologies, brain science, and behavioral research?
Have you noticed the publication dates of the recommended resources? Each one dates back over twenty years! Given the swift scientific progress in understanding neurodevelopmental disorders and significant socio-political shifts, a considerable portion of the information seemed out of sync with our reality.
👉 What’s with all the super smart white boys who love motors?!
Look at those book covers! Ridiculous! I’m planning a full post on this subject, but for now, let’s acknowledge the urgent necessity for a significant overhaul in how ASD and those who experience it are represented.
👉 How might we better support the complex experiences of families and caregivers?
Research shows that raising an autistic child often places immense emotional, physical, and financial burdens on families, leading to increased stress, health issues among caregivers, and even impacting family cohesion and the effectiveness of interventions.6 We must support the supporters, or the entire system collapses.
👉 As parents of autistic children, how might we better recognize and embrace our own neurodivergence?
This is the question that keeps me up at night, but it’s barely mentioned in the literature. We know now that neurodevelopmental disorders are highly heritable, with an estimated 50% of genetic risk predicted by common genetic variation and another 15-20% due to spontaneous mutations & epigenetic mechanisms.7 Credit to Peach’s doctor, she brought this up in our evaluation. In my case, it's clear that I should undergo an evaluation, as Peach’s "busy brain" is a mirror of my own. I can’t help but ask: where are all the other neurodivergent parents?
More to come next month! In the meantime—while I was finishing this post, Peach peacefully created “books” at my feet, and she’d like to show you her final masterpiece:
She’s my superstar! And I’m just grateful to live in her orbit.
Happy Spring,
Robin
Centers for Disease Control and Prevention. (n.d.). DSM-5 criteria for autism spectrum disorder. Retrieved March 3, 2024, from https://www.cdc.gov/ncbddd/autism/hcp-dsm.html
Rylaarsdam, Lauren, and Alicia Guemez-Gamboa. “Genetic Causes and Modifiers of Autism Spectrum Disorder.” Frontiers in cellular neuroscience vol. 13 385. 20 Aug. 2019, doi:10.3389/fncel.2019.00385
Tchanturia, Kate et al. “Towards an Improved Understanding of the Anorexia Nervosa and Autism Spectrum Comorbidity: PEACE Pathway Implementation.” Frontiers in psychiatry vol. 11 640. 7 Jul. 2020, doi:10.3389/fpsyt.2020.00640
Van Wijngaarden-Cremers, Patricia JM, Wim Van Den Brink, and Rutger Jan Van Der Gaag. "Addiction and Autism: A Remarkable Comorbidity?" Journal of Psychology & Psychotherapy, vol. 2, no. 4, 2014, Radboud University Medical Center, Karakter University Centre Child & Adolescent Psychiatry, https://www.longdom.org/open-access/addiction-and-autism-a-remarkable-comorbidity-2329-6488.1000170.pdf.
Hudson, C. C., Hall, L., & Harkness, K. L. (2019). Prevalence of depressive disorders in individuals with autism spectrum disorder: A meta-analysis. Journal of Abnormal Child Psychology, 47(1), 165-175. https://doi.org/10.1007/s10802-018-0402-1
Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clinical child and family psychology review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6
Saxena, Roheeni, et al. "Role of Environmental Factors and Epigenetics in Autism Spectrum Disorders." Progress in Molecular Biology and Translational Science, vol. 173, 2020, pp. 53-78. ScienceDirect, doi:10.1016/bs.pmbts.2020.05.002.