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The dual responsibilities of work and caregiving
When my son was diagnosed with autism, I was fortunate to be a school child psychologist in a workplace where autism and my caregiving responsibilities were understood. I was able to easily find out about resources, specialized providers, and what to look for in my son’s behavior and development.
But most parents don’t have that knowledge or those resources. For many parents, there is so much confusion about how to identify concerns, the very practical aspects of getting access to specialists, getting a diagnosis, and getting interventions for their child.
There are also so many appointments and time consuming steps to take for care, often creating difficult, daily circumstances for working parents.
Understanding those circumstances—what working parents’ days look like as they navigate work and caregiving—leads to awareness, and that awareness leads to empathy. This is why I want to tell my story.
What is autism spectrum disorder?
A brief note about language: there are different, evolving opinions among people on the spectrum, and their families and loved ones, about which language should be used to talk about autism. I’m using the most inclusive language possible in a way that feels authentic to my experiences.
The clinical name for autism is autism spectrum disorder. It’s a developmental disability characterized by:
- Unconventional ways of learning
- A propensity toward routines
- Unique social interactions
- Challenges in typical communications and processing of sensory information
About 1 in 44 children in the U.S. have been diagnosed with autism, which doesn’t include kids who may have characteristics of autism but don’t have a diagnosis. Autism can range in the level of impact and support that is needed.
Due to more awareness, education, and better diagnostic tools, the rates of diagnosis have gone up. A recent study shows that autism diagnosis rates in some U.S. areas nearly tripled between 2000-2016.
Autism is fairly common in children. For employers, this means it’s likely that some of the parents they employ are raising children on the spectrum. Here’s what that can look like.
I’m an older mom who decided to have a baby on my own, via a donor. When my son was around 9 months old, I started having concerns about his development. He didn’t respond to his name, had bouts of frenetic energy, and lacked the ability to engage in joint attention.
My son was deemed at-risk for autism at 12 months of age, and fortunately, began receiving speech and occupational therapy immediately. He was officially diagnosed at two years old.
What getting a diagnosis looked like for me
When I started having concerns, my first instinct was to get him evaluated. I went through a process of setting up lots of appointments with different specialists. For an autism diagnosis, parents may have to see a neurodevelopmental pediatrician along with a speech pathologist and/or an occupational therapist.
My son has difficulties eating, so we also saw a feeding therapist. I wanted to meet with all these specialists to build a team for my son, so we could address every angle of his diagnosis. Of course this required lots of appointments, phone calls, and time taken off work.
The time slots best for working parents—early in the morning and in the late afternoon—fill up quickly, as everyone is trying to balance work and keep their child from missing preschool or daycare.
My greatest challenges with raising a child on the spectrum
There are many wonderful discoveries when caring for a child with autism, along with some interesting challenges. One aspect that’s somewhat hidden is the higher probability of other co-occurring conditions such as ADHD, anxiety, gastrointestinal issues, and sleep disorders.
My six-year-old son goes through cycles. Some months, he’ll wake up at midnight and stay up until 4 a.m., for weeks at a time. I’m awake with him during those times, and know other parents experience this same routine.
My son also has challenges around eating, so I’m always worried about making sure what he’s able to eat is available, which becomes stressful when he’s at school. Things that caregivers or parents might normally take for granted, like sitting down for a meal or eating out, come with some extra stress, time, and preparation when raising a child on the spectrum.
My son is preverbal. This means he has language, but doesn’t spontaneously request things he needs or have conversations. We work on that a lot. I’m trying to balance letting him be who he is while also practicing some interventions to help him become independent. He also has a talking device, so communication doesn’t have to look one certain way for him.
Balancing caregiving with work
Each caregiver has their own unique challenges. For me, during the cycles when my son is awake for large chunks of the night, I can normally handle a couple of days. But if it’s prolonged, I start to really feel the exhaustion of missing sleep.
Due to sensory issues and a restricted diet, my son lacks some of his nutritional requirements and gets sick a lot. He misses quite a lot of school, which means a change in routine for him. That disruption in a structured day is hard, and it disrupts my work day as well. Children on the spectrum will often regress if they miss school, making it harder for them once they do return.
We work really hard on flexible thinking, but it’s comforting for him to have that structure and sameness to his days. For a child with autism, often little moments in life need to be continually addressed, and entail a whole process to ensure progress, growth, and adaptability.
Childcare becomes more complicated, too. It’s difficult to find childcare right now, period. The additional criteria of finding someone who has the training and understanding to work with a child on the spectrum makes it even harder.
As a caregiver, you manage these challenges and get into a routine. But balancing disruptions and appointments with work requires a lot of planning to offset a lot of conscious and unconscious stress.
Navigating my son’s education
Navigating services and education is complex. When a child turns three, if they qualify, services are then transferred from early intervention into the public school system. This means going through another round of assessments, tests, and appointments to determine eligibility and create an individualized education plan (IEP).
I am fortunate that my profession gives me access to knowledge about the education process. But for many, the process of evaluation and getting an IEP can be overwhelming.
Of course I want to ensure that my child has the best program, which can entail lots of meetings, debates, and even some conflict about how to structure his school program. Every three years, we go through the assessment process again.
As a parent or caregiver, you have to stay on top of things and ask yourself, what kind of progress is my child making? Is he getting the services and support he needs?
If you have a good team, you’re in constant contact with the school. If you don’t, you’re constantly having to advocate for your child. It’s time consuming either way.
For working parents, the multiple roles of employee, caregiver, and advocate can be overwhelming.
How workplace leaders can support parents and caregivers
Throughout these challenges, I’ve found it best to try to accept the unexpected, embrace some chaos, and find the humor in each situation. My son has a big personality with many special qualities that make life fun and full of adventure.
But my child also has a lot of needs that interrupt my work from time to time. For working parents like me, there are so many things leaders can do to help decrease stress, increase productivity, and promote overall wellbeing, including:
- Getting to know their employees
- Ensuring each employee is comfortable discussing any struggles they may be having with balancing work and caregiving duties
- Being mindful that if an employee is struggling, there may be something going on at home
- Thinking about ways they can provide additional support to those employees
Practicing empathy through workplace support
I hope my story has provided some insight into the lives of employees who are raising children with autism. For HR and People leaders who want to implement workplace support, consider:
Employee resource groups. It’s helpful to talk to others who may be going through similar struggles, to lessen feelings of isolation and share knowledge.
Flexible scheduling. For parents or caregivers raising a child on the spectrum, there may be multiple appointments throughout the week, and a need for flexibility. A child on the spectrum may need an intensive level of care and interventions. Respecting these scheduling boundaries in theory and in practice is important.
Easing the financial burden. Specialized providers and other forms of medical support and childcare can easily become massive expenses, on top of the already high costs of child raising. Making sure health insurance benefits follow state laws, and include comprehensive care for autism as well as childcare subsidies, provides immediate and tangible support.
Spreading awareness. This could include webinars, educational resources, and/or ERG presentations.
Mental healthcare for the whole family. A comprehensive EAP, which includes therapy for parents, caregivers, and children, plus coaching for parents, is one of the best ways to offer effective support.
Seeking knowledge, finding empathy
I know that HR leaders want to help their employees. I’m sure it’s part of what draws them to the job. For leaders who want to take action, I encourage:
- Making workplace support a part of the company culture
- Seeking knowledge, about:
- Inclusive language
- Evidence-based therapies
- What employees may be dealing with at home
- The full spectrum of what autism means for people’s lives
Many children with autism grow up to be adults who are fully capable of working, and have unique skill sets that provide value to companies or organizations. Here are four ways to build a workplace where autistic employees can flourish.