Autism: Life Amplified
A Global Experience that Varies like the Diagnosis Itself
In a park tucked away in Manhattan Beach, my son was having a blast - running like a charged neuron, taking a frisbee that belonged to an unsuspecting mother sitting on a park bench nearby and waving it over his head like a trophy, while streaking as fast he could away from her. As she got up to chase after him, yelling and wagging her finger, her calls for an apology fell on deaf ears. Of course, her pursuit only made him sprint faster, and to be honest, I couldn’t really blame him. As any mother knows, an object in motion will stay in motion, and there aren’t many things both equal and opposite to that of the energy fueling an eight-year-old boy on the chase… especially one with autism.
Encounters like this have become so routine that I made a t-shirt that I wear on outings: Autism: Life Amplified. As I made my way over as fast as I could to stop her from yelling at him for his “disrespect”, to explain his diagnosis and how his symptoms manifest, I did my best to be serious. Honestly, I was having a blast too- exhausted, absolutely, but these are the moments I have learned from my son that serve to build momentum and lead to meaningful conversation. If this seeming chaos were an invitation to open someone’s mind with a quick lesson on autism and its symptoms, I was here to show this unsuspecting stranger that often, there is more going on than what meets the eye.
On the opposite end of the world in Baghdad,, Shaimaa al Hashimi has two children who are both autistic and blind. She removed them from a school that lacked the understanding and knowledge about how to work with children that have developmental disorders, and part of their new homeschooling curriculum was to go to the park in the middle of each day. The other children at the park were unfriendly. They didn’t understand what they were seeing and why Shaimaa’s children behaved differently. Like me, Shaimaa innovated alone, creating badges that she would affix to the back of their shirts that said, “I’m special needs, please be nice to me.” Upon seeing these badges, the other children did change their behavior and extended kindness.
I had no idea that a mother from Los Angeles and a mother from Baghdad would have so much in common.
It doesn’t matter where you are in this world, the experience of nurturing a child with autism is a life-altering experience. Without the perks of sleep, we are charged with maintaining social etiquette while managing behaviors that at times drastically diverge from social norms. Many of those behaviors put our childrens’ safety at risk, resulting in a parent’s tireless, vigilant lifestyle. We balance jobs to pay for therapy, but many therapists are undertrained and overconfident, assuming the worst of our families and creating massive debt and disruptions. We are constantly conflicted by the opportunity to teach our own circles of influence about autism to increase understanding and the desire to keep the health of our child private. We see the best and worst of humanity as a result of our mere presence in society.
The upside of this hugely diametric and fluctuating existence is the relationships caregivers/parents have with one another. When we find each other, there are no barriers. Regardless of cultural, religious, ethnic, or national differences, we are drawn to one another as we find safe understanding. In November, I visited two schools and a clinic in Kiev, Ukraine, to understand the resources, services, and acceptance of those with autism in a country at war. As I walked down the hall of the clinic, I noticed the faces of the parents who lined the walls; they shared the same mixed expression of pain, hope, loneliness, fight, and gratitude. I know that face well because it is mine. There are no cultural boundaries to that look.
In July of this year, I spoke at the AI for Good Summit at the United Nations’ ITU conference in Geneva, and this concept was proven when individuals from around the world shared with me in meaningful exchanges their own connection to this vulnerable population. Still a stigmatized topic, many of these conversations occurred in hushed tones, but it was impossible to deny that they all spoke to the core of our shared humanity, beyond borders.
One item that kept rising to the top: the need to elevate the conversation around autism and to provide protections and a better way of living for this community. Every country around the world needs to be involved. The topic is unifying in that not one nation is exempt from the opportunity to rise stronger in support of autism.
Six-year-old Gwendoline, an autistic child, his held by Professor Gilbert Lelord while under his care at Bretonneau hospital in Tours, France. Bretonneau specializes in psychiatric problems in children. (Photo by Bernard Bisson/Sygma via Getty Images)
There is no singular governing body or formal council that includes representatives from all countries to share best practices and buoy standards of care. The services, resources, and acceptance of those within the autism community varies as widely as the diagnosis itself. In Ukraine, Alexander Kiian, president and founder of The Brain Stimulation Center, a highly reputable clinic, asked for help to connect with leading clinicians and doctors in the United States to cross-pollinate leading therapies, data, and novel practices. A lonely journey, even for the professionals, our whole community is looking for an opportunity to learn and to unite.
In speaking with Dr. Mohamad Baby, a front-line warzone physician with the United Nations SOS agency, I asked him where the gaps exist in autism therapy and treatment where he is headquartered in Eastern Africa. His response, “In order to have a gap, you need to have a start,” shaped my effort to lift all boats with the rising tide of information sharing. Even though some countries do not even have a policy written to protect the safety, security, success, and livelihood of this population, all countries have people with autism. The diagnosis is not a respecter of borders, gender, race, ethnicity, or religion. The CDC estimates that there are 75-million people around the world who have autism. Their rights must be protected.
Here’s a few insights into how we’re taking care of them:
The chart grossly simplifies the nuances of the services, resources, and attitudes that are prevalent within each nation-state. And each country has a level of information and heroic trailblazers that actively campaign for the rights of this community.
By looking over that chart, the possibilities to learn from each other are endless. For example, in responding to these questions from the American perspective, it is difficult to answer if citizens receive federal funding upon diagnosis. Within the United States, federal funds are given to individual states to provide services and resources for residents. The varying degree to which funds are dispersed for this purpose are decided on by that state - California, New Jersey, and New York, are models of supporting their autistic communities. In Utah, although it has an economic surplus, it poorly serves its residents with some on waiting lists for the entirety of their lives. The lack of resources in some states vs other states prevents people from moving for economic opportunities. This one simple item makes Iraq a model to the United States on how to take care of its citizens with its monthly stipend of $100 per household.
On the other side of the token, there is an overarching cultural desire in the United States to understand and go beyond acceptance to inclusion of the autism community. This stands as a model to Iraq, which hasn’t yet adopted inclusion into its system. The opportunity here is that we can all learn from each other.
As Dr. Baby said, “In order to have a gap, you need to have a start.” The start is a cohesive conversation. Meaningful discourse can only happen when there is a transparent understanding of every country’s position and care. In some countries, children are locked behind doors, and in others, children are sent to the bush and never seen again. To protect this population and to create a standard of care, we need to understand what’s going on in all the corners of the world. This is why I started the Global Autism Coalition.
The Global Autism Coalition serves as an information hub with a steering committee composed of government officials, technologists, city planners, scientists, doctors, and parents. They are charged with discussing policies, advances in science and behavioral medicine and therapies, new innovations, and parents can shed light on how all of these things will affect a single household.
With that collection of experts, there are tangible items that can be shared immediately to start solving these challenges:
Technology can serve as the great global equalizer by bringing information and digital therapeutics straight into the household with the help of a tablet or smartphone. Specifically, advances in diagnostics, therapeutic predictions, data collection and reporting, behavioral training, and social and emotional learning apps are being commercialized now and provide immediate assistance to families who need it.
As AI continues to grow and become more representative of the autistic perspective, it could be pivotal in creating a universal standard of care, populated by doctors, parents, teachers and therapists in wide ranging areas throughout the world who have experienced and learned autism in a way that benefits others.
Parents and caregivers have unique voices on life with current policies and funding practices. Shaimaa al Hashimi opened her own school for those with autism in Baghdad because nothing existed before. Olesia Korzhenevska from Ukraine opened her own autistic-serving school, 9 ¾ School, because she didn’t have a choice in the education of her own son. The global coalition should ask the question “why” - what was it about the policies in Iraq and Ukraine that put such a strain on the families that they stopped their careers and opened a school to secure the safety and education of their children. It is an opportunity to learn from those on the ground about the effect of policy.
City planners would have an opportunity to share strategies to make daily living easier for those with disabilities. In the UAE, sidewalks extend all the way from the parking lot to the ocean so that those in wheelchairs or on crutches have the chance to be at the water’s edge. It’s those little tweaks that make all the difference.
It is a lonely journey to navigate care on our own especially when many of us are experiencing the same punches on a daily basis to different degrees. Putting together a global coalition that speaks frankly to the challenges of autism with a mindset of securing the safety, livelihood and success of the global autism community, is a point of unification at a time of great fractures. I think back to the faces I saw in the Ukrainian clinic and how without exchanging one word, I knew them, and they knew me. It’s as though we share the same tattoo artist who carved an identical mixture of emotions from our foreheads to our chins. In Budapest, I met with Zsusza Matolcsi, who was inspired by her daughter to open a school to accommodate young students with autism. We spent the bulk of our time together talking about our journey as parents - and her concern for the wellness of the parents of her students. ZsaZsa would have known the Ukrainian caregivers too. It’s an exclusive look, and one earned, although I argue it’s time to add more hope to it.
Heidi Kershaw is the Founder and the CEO of the Global Autism Coalition, an organization that secures the safety, livelihood, and success of the global autism community.
Before forming GAC, she was a Managing Partner at the Entertainment Industry Foundation and the Executive Director at the California State Summer School Arts Foundation.
Samira Diebkile, Shaimaa al Hashimi, Zsuzsa Matolcsi, Olesia Korzhenevska,, Alexander Kiian, Meeta Thareja, Matthew Pfohl, and Rick Healey contributed to this piece.