While in a meeting, I (Ben) felt my phone buzz in my pocket. My heart skipped a beat, sweat slowly beading on my forehead. I closed my eyes and hoped that it wasn’t a dreaded call from school. It was. I excused myself from the meeting and stepped out into the hallway. As expected, my kid’s school was having difficulty with them and needed me to pick them up. I popped back in to apologize for leaving early and joined the rest of the meeting from my phone as I jogged to the train station to get back home.
This had happened nearly a dozen times over the past few months. Six months later my child would be out of the public school system.
Parents of neurodivergent children — which both of us are — experience personal challenges that are difficult to explain. There are many reasons for this — the lack of (especially accurate) representation of neurodiversity in the media, the myth of the “perfect” family, the pressure to be the “perfect” parent or to have the “perfect” child, the social media illusion. But it all comes down to it often being too exhausting to get into explanations at work on top of everything else we are dealing with. Some of us summarize these experiences with words like “autism” or “developmentally delayed,” but if someone hasn’t dealt with these issues, they really have no idea what those words mean.
These personal challenges also mean that parents of neurodivergent kids bring new abilities to their work beyond job-related skills, forged in the crucible of an atypical parenting situation. In terms of planning and time management, we are experts at forecasting successful timelines, and are hypervigilant against obstacles to a team’s goals.
If we are to use these skills and thrive in the workplace, colleagues need to more deeply understand our parenting situation. In personal contexts, a lack of understanding can be annoying: friends who get angry when we miss an appointment to deal with a meltdown at home, difficulty finding babysitters, everyone’s unsolicited advice on something we never said was a problem. In work contexts, however, parenting a neurodivergent child can be debilitating. We need more support. We need more flexibility. We do not need yet another fight. Organizations need to provide systems and processes to help employees more easily integrate their work and parenting challenges while also recognizing the profound asset these parents are to the workforce.
There’s no way around it: parenting neurodivergent kids is a challenge. Even though we have advanced as a society in creating better understanding of the spectrum of neurodiversity, it still is not well-resourced or given social priority. Finding basic services can be challenging. In the U.S., the quality of care and availability of support services can swing wildly from state to state and city to city.
Unsurprisingly, these factors cause parents of neurodivergent children to drop out of the workforce at very high rates. This is often because one parent needs to provide full-time support to their child, especially if the family can’t afford adequate care. Organizations must take it upon themselves, both from a moral and performance perspective, to step in to ensure that these parents get the support they need to stay — and flourish — in the workforce.
The Neurodivergent Parenting Experience
Working while parenting a neurodivergent child can be wildly unpredictable. Depending on how the child presents, the necessary care can vary widely in time requirement, magnitude, variability, and frequency. In some cases, it means some days an employee has to call in to meetings without video because they need to be physically near their child the entire day. In others, most days might not require any considerations, but on others, parents will need to step out with little notice. This is not a reflection of the parent’s commitment to work or, in many cases, their ability to be productive and meet goals. Rather, it is a demonstration that they also have time commitments to their families to support and care for the unique and different abilities of their children.
My (Kalifa’s) son was diagnosed educationally just before he turned 3, and medically, just after. He was a bubbly baby who reached most developmental milestones really quickly. He was a funny little leader in daycare. But as time passed, I noticed two things: he preferred parallel play, meaning he didn’t really interact with his peers though they kept trying to interact with him, and he just wouldn’t speak. He was around 2-and-a-half when I became convinced that something felt different about how he interacted. But as a new mother, I wasn’t sure what to look for. The internet was not helpful (and a scary place for a new parent). My doctor asked me to monitor him, but I was not sure what to monitor for. Most people around me shrugged it off as me being hyper-worried, insisting he would grow into it. But I knew something was different.
Fortunately, I am a research junkie and pored over research papers, early intervention papers, and information on state assistance programs. It was a taxing process. I felt overwhelmed, anxious, and stressed. I made no mention of this at my job and kept working like normal. I checked my company’s resources for potential help. I checked our insurance coverage, and it was unclear that there was anything there. So I took all my lunch breaks, early mornings, and post-work hours to schedule appointments and in-home visits. I was spent. But after a few months, I found him support. He started a county early intervention program on his third birthday. Afterwards, I still didn’t feel like I could speak about it. I didn’t fully understand the diagnosis, and I knew there was nothing I could find in my company that showed they cared. I felt that my role as a parent of a neurodivergent child had no professional place at work.
It took me about three more years before I spoke up about what parenting my autistic son looks like at work, but I did it because I realized I was in a position to normalize the conversation and create a foundation for support for anyone going through what I went through. When I did speak up, I was overwhelmed with messages from people sharing their own stories with me.
My (Kalifa’s) autistic son, now 8 years old, often goes through periods where he has severe sleep issues (which can be typical with autism) that amplify some behaviors related to autism and comorbid conditions. This disrupts the whole family’s sleep — including his younger siblings’ — and also means I am exhausted and stressed out during my workday. These unpredictable periods take a toll on my energy, well-being, and sometimes productivity at work.
Initially, I would push through to the point of complete exhaustion, which would compound through the sleep regression period. To better cope and minimize this impact on my performance, I learned to do three things at work: 1) I immediately rearrange meetings when I can, 2) I take breaks between meetings and while doing work that requires intense focus like writing or data analysis, and 3) I am open about my experience. I realized that while people may not be able to completely understand my son’s situation, they can relate to sleep issues — an entry-point for discussion. I know the sleep regression periods are not everyday occurrences and are finite. And I knew I could create balance between my personal and work commitments by changing how I work, which has allowed me to better monitor my son’s needs during those periods.
This all means that sick days for parents like us may be to preserve our mental health and well-being. We often have to stand in to be the only and biggest advocate for our children. We have to have the energy to pour into them and fight systematic obstructions that refuse to give them a chance to exist. It means intentional self-care and pouring into ourselves to ensure there are no chinks in our battle armor. And on a very practical note, financial support that allows us to afford therapists, both for ourselves and our children, is essential, as this support is not always covered well by insurance, if we have it to begin with. Without that support, parents are often left to fend for ourselves and grind through extremely challenging situations that most people can’t fathom. These parents are people you probably work with closely, collaborate with, and even share a joke with every day — who have learned to struggle silently so that they do not appear performance-compromised at work.
Support is far more important than companies realize. Organizations should provide additional support for parents early on in the parenting journey that includes valid information about neurodiversity from trusted sources. This can take the form of informational sessions, speakers, or employee resource groups (ERGs). This won’t just help parents of neurodivergent children, but also neurodivergent members of the workforce, while educating other employees about neurodiversity.
Supporting a Fundamental Asset
Learning how to be more inclusive is a key lesson that comes with neurodiverse parenting. It is easy to categorize people who are different as “them,” or to describe people we choose to other as “weird” or “odd.” When caring for neurodivergent children, you quickly begin to better understand the actions and behaviors that can be viewed as strengths, and you also learn how things typically viewed as weakness and disabilities can simply be supported and viewed as different abilities. You learn to see past quirks and idiosyncrasies towards solutions. For example, many autistic people are strong at pattern recognition. Many autistic people are amazing data analysts, but they may not interview well because of speech and cognition delays or comorbidities such as anxiety or attention deficit hyperactivity disorder (ADHD). These lessons that parents of neurodivergent children learn very quickly can make them some of your best and most productive leaders.
As workforces increasingly acknowledge neurodiversity, these parents, if they choose to, are uniquely qualified to act as a bridge between neurodivergent and neurotypical employees and help develop processes, systems, and programs around neurodiversity that will make them and the organization more successful.
Regarding time, parent-determined schedules are essential. These schedules can be planned somewhat in advance, but some parents may require more variability in their hours than others. This may mean that meetings at unusual hours are actually easier for these parents; if the kids are asleep by 9 p.m., a 9:30 meeting will be less stressful than one at 5 p.m.
While emotional support should include financial resources — fair pay, mental health services, and childcare support — other employees also need to step up. Empathy and curiosity from coworkers, rather than judgment, goes a long way towards making parents of neurodivergent children feel safer and more engaged in their work.
When other parent coworkers deliver anecdotes about their own experiences to try to help, they often in fact demonstrate how uninformed they are. This can signal that sharing more challenging parental experiences isn’t okay. Instead, it’s important to get curious about what a parent of a neurodivergent child experiences and maintain an open mind. Trainings can help. Some parents, of course, may not want to share more, and that has to be respected; in many cases, they are still trying to process it themselves.
Supporting charitable organizations is also a nice side effort, but be sure to avoid problematic organizations such as Autism Speaks. When considering nonprofits that support neurodivergent people, look more closely at how they advocate for their target group. Do they include these persons in their leadership and decision-making? Do they promote fear or understanding? Aligning with organizations that are problematic can send the same message as doing nothing at all. In fact, it can sometimes do more damage.
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Supporting parents of neurodivergent children is different from support systems companies are used to, but it’s not a huge lift. These parents have extremely valuable skills that only appreciate over time. Supporting them is both a moral and economic imperative, especially as more employees begin to acknowledge and identify with neurodiversity.
As always, listening to your employees with different backgrounds, integrating their feedback and experiences, and continuing to evolve the organization will certainly and immensely benefit it and society overall. And if these conversations get challenging, you can be sure that parents like us can handle it.