Iterating Autism: Approaching the Autism Spectrum with a Design Thinking Mindset

By Ayush Agrawal

When he was three years old, author Ayush Agrawal's younger brother was diagnosed on the autism spectrum. Before Aryan's diagnosis, their parents had never heard of autism. Why had this happened? What could be done to help him? Who could serve as a guide?

Autism is the fastest‐growing developmental disability in the world, with

• Language: English
• Publisher: New Degree Press
• Release date: Oct 18, 2022
• ISBN: 9798885046558

Ayush Agrawal

Ayush Agrawal loves spending time with his autistic younger brother, Aryan. Watching Aryan's pain, anxiety, stress, and confusion while growing up pushed Ayush and his family to search for any possible solutions to alleviate Aryan's troubles. In his book, Iterating Autism, Ayush shares his journey so that other caretakers of autistic individuals don't have to go through the same mistakes and troubles he and his family endured for over nine years. In addition to being an author, Ayush is an advocate for greater inclusivity. He is a leader in various nonprofits, including the Stanford Neurodiversity Project, and regularly volunteers his time as a peer and mentor to autistic individuals.In his spare time, Ayush enjoys spending time basking in California's gorgeous sunsets, playing cards with his family and friends, and enduring his friends' taunts for being too tall.

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Iterating Autism

Approaching the Autism Spectrum with a Design Thinking Mindset

Ayush Agrawal

New Degree Press

Copyright © 2022 Ayush Agrawal

All rights reserved.

Iterating Autism

Approaching the Autism Spectrum with a Design Thinking Mindset

ISBN 979-8-88504-539-1 Paperback

979-8-88504-865-1 Kindle Ebook

979-8-88504-655-8 Ebook

To my younger brother, Aryan—thank you for introducing me to the beautiful world of neurodiversity, and for always being an inspiration to continue growing.

Contents

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Introduction

Chapter 1. Knowing the Disorder

Chapter 2. History, Mystery, Controversy

Chapter 3. Setting SMART Goals

Chapter 4. Time to Test

Chapter 5. Maintaining Resilience

Chapter 6. Building a Village

Chapter 7. Sibling Perspectives

Chapter 8. Final Thoughts

Acknowledgments

Appendix

I can be changed by what happens to me. But I refuse to be reduced by it.

—Maya Angelou

Introduction

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Ten years ago, in a small Indian clinic about thirty minutes north of New Delhi, my then three-year-old younger brother was diagnosed on the autism spectrum.

Before Aryan’s diagnosis, my parents had never even heard of autism. Where did it come from? What would happen now? What could we do to help Aryan? Who could even guide us? The smattering of questions had no answers, and it overwhelmed us. Everything really did feel hopeless. And it really felt like our circumstances were only going to get worse.

Today, according to the United States Centers for Disease Control and Prevention, autism is the fastest-growing developmental disability in the world, with more than six million children in the United States alone affected by the disorder. An autism diagnosis holds different meanings for everyone. For some, like my own family, it is an entirely new concept—a bizarre term that is accompanied by confusion, anxiety, or disbelief. To others, it comes with relief: societal validation that they are indeed different—that there’s a reason for all the challenges they’ve had to put up with—and a step toward finding their fit in an otherwise rigid social hierarchy.

Regardless of what it means to you, I assume that if you have picked up this book, autism deeply impacts your life.

I have indirectly wrestled with autism’s challenges for over a decade now. Spending time with my brother Aryan—hyperactive, nonverbal, and headache-prone—has formed the crux of my daily life: A part I dearly adore but one that can also feel like an immense burden at times. The spark in his eyes when I chase him up and down the stairs fills me with incomparable joy. Yet watching my mom toil away, cooking three extra meals every day to accommodate his special diet, breaks my heart too.

Spending time with Aryan has also made the pain, anxiety, stress, and confusion he has to undertake in his daily life that much more distressing to me. There’s a chaos that manifests even in Aryan’s most insignificant and trivial activities. Watching him scream at us in frustration, complain about severe headaches, and shed tears when tired and scared pushes us to find any possible solution to alleviate his troubles.

It doesn’t matter the time needed, the cost, or the difficulty. We want to help him, and we’ll do whatever it takes.

And we’re not alone. Over the last ten years, I have gotten the chance to reach out and talk to hundreds of families with a loved one on the spectrum. It hurts to hear, repeatedly, that most of them were also led astray by the huge amount of (often contradictory) information out there about life on the spectrum—despite putting in so much time and effort.

The bottom line is that there exists no definitive way to approach autism. There is no one-size-fits-all medicine or therapy that works for every child—which makes sense because autism is such a diverse condition: a spectrum of challenges that no one has been able to fully understand yet.

Still, my family’s love and desperation have pushed us to find that magical cure to Aryan’s troubles. For the first four years following his diagnosis, my parents hodgepodged every solution they could find and reasonably implement. They had no clear goals in sight and little knowledge to act on, but every day seemed to bring about an emergency—an urgent need to relieve both Aryan’s and our own stressors.

Over those four years, Aryan followed a variety of special diets; took three different kinds of biomedical supplements; participated in ABA (applied behavioral analysis), occupational, and speech therapies; and tried alternative medicinal approaches that included Ayurvedic therapy, homeopathic treatments, and ADHD-calming medications. In all the confusion, everything was carried out simultaneously, leaving no means to distinguish between which approaches were working, which were ineffective, and which might even be causing more harm than good.

Unsurprisingly, Aryan did not improve much during those years. Although his language abilities somewhat progressed, his meltdowns, tantrums, and general self-destructive tendencies continued to grow. The problem was exacerbated by the fact that we lived in India at the time, a country where awareness and acceptance of such mental health diagnoses are minimal.

This is where design thinking came into our lives, and it definitely changed how my parents and I viewed the autism spectrum.

Given the chaotic nature of life with an autistic child, it is critical for a family’s mental health to have some clarity, some bigger picture to be aiming toward when tackling a daily life full of unexpectedness. A design thinking mindset helps provide that structural baseline. It reassures us that there is a rational way to process all the incoming stimuli and build something meaningful out of them. That there does exist a way to personalize our situation in a way most treatments promising miraculous improvements cannot compare to.

Ideas of personalized, iterative approaches to the autism spectrum are what form the core of this book, supported by stories of my own family and a diverse range of others. It is important to re-emphasize, however, that it is not the specific treatment itself that matters. What worked for one individual with autism may not work for another. And make no mistake—the design thinking process is challenging. While some experiments can be conducted quickly, others can take weeks or months to start yielding measurable results. Sometimes the results might not be measurable at all. Resilience and mindfulness are underestimated but highly important parts of the process.

Things can seem long and pointless at times. But if you are the parent or caretaker of an individual on the spectrum, I sincerely hope you can take away something meaningful from this book, whether it be a new mindset toward approaching autism or maybe even just some heartwarming and informative stories of others who might be in a similar boat as you. While I cannot promise you that it will be as effective for you as it has been for Aryan, choosing to practice the design thinking mindset can be incredibly rewarding, as we will continue to see over and over again throughout this book.

Also integrated throughout this book are valuable insights from experienced professionals, including Dr. Suzanne Goh, Harvard Medical School graduate and founder of the award-winning company Cortica; Karina Sizemore, board-certified behavior analyst and clinical specialist at Autism Learning Partners; and Dr. Lawrence Fung, head of the Stanford Neurodiversity Project and assistant professor of psychiatry at Stanford University.

I realize that some of you reading this book might be skeptical because of my young age. That I’m just a teenager who doesn’t know much about the world of parenting, with or without