Starting over: A child who fled Ukraine with her family attends school in Romania. The war in Ukraine has displaced millions of children, including those with autism, who now need services in unfamiliar countries. Andreea Campeanu / Getty Images
Two months ago, a two-story peach-colored building with a playground housed a kindergarten for 30 autistic children in Kyiv, Ukraine. But since Russia attacked the country on 24 February, the structure has served instead as a shelter, with the families who once received therapy and an education there — and the therapists themselves — now taking advantage of its secure basement, kitchen and food storage. All autism-related services, save for a few online sessions, have stopped. (For the group’s safety, Spectrum is not naming the center.)
The director of the foundation that runs the center, Iryna Sergiyenko, has pivoted too: Instead of running a school, she’s fielding requests from dozens of families with autistic children who need help and have, in many cases, fled Ukraine, as she has. Through messaging apps and a Facebook group she set up called ‘Ukraine autism HELP,’ Sergiyenko — who has an autistic younger brother — responds to a litany of common pleas: Will there be autism services where I am going? How do I explain why we left, and why my child’s father stayed behind? Are there any therapists who speak Ukrainian where I am?
She is one of many autism professionals scrambling to address the needs of Ukrainian autistic people whose lives have been upended. Across Europe and elsewhere, many have opened up their schools, connected families with therapists who speak Ukrainian, and collected medications and autism-friendly toys. They are raising money to support families or, like Sergiyenko, keep the lights on somewhere. One of the mothers Sergiyenko helped left for Bulgaria, noticed a lack of autism services there and immediately started organizing providers, with Sergiyenko’s support.
“That’s what we do,” Sergiyenko says. “We don’t like to sit still.”
“The biggest concern is that our kids really have fewer resources to cope, and in some cases lesser ability to understand what’s happening,” she says. Read more
I can relate to so many parts of this article. I found in my life from an early age that if I was myself it often resulted in getting punished in some way or another. Disciplined on a job because I was not kissing ass to a manager who told me that was my job. At work they had a sign on the front desk door “ you are going on stage now”. I used to completely be mentally drained at the end of my shift, I took a nap in my car before leaving work. I got disability because most employers would not allow frequent mental breaks according to the state. I have had challenges in dating, and with my family, so I spend a lot of time alone. Deep down I was always a rebel without breaking the law. In my marriage trying to meet my ex wife’s expectations did effect my wellbeing. – Greg
In an article in Spectrum, Autistic burnout is defined as “the intense physical, mental, or emotional exhaustion, often accompanied by a loss of skills, that some adults with autism experience. Many autistic people say it results mainly from the cumulative effect of having to navigate a world that is designed for neurotypical people.”
There are many kinds of burnout in the world: workplace burnout, parental burnout, social burnout, to name a few. Autistic burnout differs from other forms of burnout, as it often includes sensory distress and sensory-related triggers. Many of the pressures from the outside world that cause Autistic burnout are invisible to most people.
Many Autistic People are already spread too thin in a hostile world that doesn’t consider our needs. Then, when we do try to speak up for our needs or try to rest, people around us often won’t understand and may even push back with well-meaning comments like “it’s not that bad” or “please come out with us; it will be fun!”
Other people recharge in environments that drain my batteries, like going out to parties, dancing, socializing, and attending happy hours with friends and colleagues. For me, something like that can be more tiresome than an 8-12 hour workday – which can also take a lot out of me, especially when I used to drive back and forth from a physical office full of sensory triggers, social expectations, and the unspoken nuances of office politics.
Before my Autism diagnosis and my very conscious decision to take my life back from the NeuroTypical expectations that had been crushing me (mentally, spiritually, and emotionally), I had been in survival mode. I was constantly teetering on edge, in and out of burnout.
I would come home from work at my corporate job and had no energy left to give to anyone or anything – not my hobbies and passions or the people in my life I cared about.
When things got bad, I began to neglect everything around me: my home, chores, life, body, friends, loved ones, and family. I was floating through life but not living. I didn’t have the energy. All I could manage was the bare minimums in life as I watched my mental and physical health fail, like a passenger in a speeding car headed for the edge of a cliff.
Hitting a crisis point was my wake-up call. Hitting a crisis point was what led to my Autism diagnosis.
The life I had built was for the sake of others, doing what I thought had been expected of me. I squeezed myself into the NeuroTypical mold that I was not built for – forcing, distorting, and breaking myself to fit.
My Autistic burnout at 29 hit me like a ton of bricks – stopping me in my tracks, forcing me to reevaluate my life. Without it, I don’t know where I’d be today.
I am still recovering over five years later. If it hadn’t happened, it is unlikely my Autism would have been discovered at all. To be diagnosed as Autistic, the person evaluating you has to see you are struggling. Before my burnout, I had managed to hide all my struggles well.
Would I still be stuck in that soul-crushing corporate job, living for the sake of other people, never learning how to speak up for my needs, and not understanding that sensory issues are real and they impact me significantly? Would I have made it, or might I have given up on life? There were many days, at the peak of my burnout, when I had not been sure how much more I’d be able to take.
When you’ve been trapped in a vicious cycle of burnout for most of your life, without knowing why things can feel quite hopeless, you start to wonder when it will end, and ending can mean a lot of different things. In my case, the end was completely changing my life and finding a more suitable and authentic way to live. The end was learning to establish boundaries and speak up for my needs. The end was quitting a job that wasn’t good for me and realizing I needed to work less.
Too many Autistic people are trapped in these cycles of burning out over and over and over again. That’s because the pressure to hold yourself to NeuroTypical standards is enormous.
Putting those expectations down can mean freedom, but also it can mean judgment. With so much on the line, it can be hard to make that leap unless you are pushed, like I was pushed, to that place of crisis, to that wake-up call, and one day you say, “Enough is enough. I’m taking my life back.”
My ending is happy, but it could have just as easily been a much more tragic and early ending if I wouldn’t have course-corrected when I did because I’m convinced that if I hadn’t made those changes when I did, my burnout would have killed me.
I want so much more than burnout and survival mode for the Autistic people of the world. I want to see Autistic people thriving and happy in life. I want to see authentic Autistic joy and success, but it is difficult when we live in a world that wasn’t designed for us.
*****
Lyric Holmans is an autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. They are also the founder of NeuroDivergent Consulting.
Lyric is known as the pioneer of the #AskingAutistics hashtag, where simple questions prompt open-ended responses that Autistic people can easily chime in with, and invites participants to engage each other in conversations related to the topic. This hashtag connects NeuroDiverse people who would not otherwise have a reason to engage with each other, and fosters collective understanding of the Autistic Experience.
