Navigating Autism in the Workplace: One Benefit Manager’s Plea to HR Leaders for Support

In the whirlwind of parenthood, nothing prepared me for the curveball of my youngest son, Ben, being diagnosed with Autism Spectrum Disorder (ASD). It wasn’t a smooth journey by any means. Looking back now, the signs were there—his struggles in daycare, the constant battles to soothe himself—but the diagnosis still felt like a sudden gust of wind knocking us off our feet.

As a benefit manager, I thought I had a handle on navigating complexities, but nothing quite prepared me for this. The endless appointments, the frantic searches for specialists, the sleepless nights wondering if we were doing enough—it was a rollercoaster of emotions and uncertainties.

Yet, amidst all that chaos, I did find hope. Hope that our experiences could shed light on the crucial role HR leaders play in supporting families like ours. Hope that by sharing our story, we could inspire change and foster understanding within the workplace.

Because I believe HR leaders hold the key to making a really big difference. By sharing educational resources and fostering open dialogue, you can create a supportive environment where families affected by ASD feel understood and valued.

ASD Resources to Share with Employees

For starters, there are a number of public-facing resources to share with employees and families. Autism Speaks, the Autism Society, and the University of California at Davis are all wonderful places to start. These are key resources HR leaders can and should share with employees through wellness fairs, employee communications, or your corporate intranet.

But understanding goes beyond textbooks and statistics. It’s about acknowledging the daily struggles, the little victories, and the sacrifices made along the way. It’s about recognizing that behind every diagnosis is a family grappling with fear, uncertainty and hope.

Changing, Shifting Benefits Can Help ASD Families

It’s also understanding that employees’ benefits can and will change. For example, patients with ASD may require more frequent dental cleanings, due to difficulties in brushing as well as the tendency to rely on sweet comfort foods as part of self-soothing. HR leaders should recognize that a diagnosis of ASD may require greater utilization of health benefits for treatment. Supporting parents in these cases may mean relaxing limits on annual cleanings, for instance, or expanding access to other health benefits. 

What’s more, HR leaders should also ensure that benefits packages cover essential therapies like Applied Behavior Analysis (ABA)—a gold standard treatment for autism. This therapy utilizes techniques based on principles of learning and behavior to address various skill deficits and behavioral challenges in individuals with Autism. I can tell you, from personal experience, it has made all the difference in our lives. ABA therapy is so vital to us that my husband and I have, in the past, quit our jobs when our employers failed to cover ABA therapy through our benefits, and gone in search of employment that would cover it.

You could also think about offering flexible work arrangements that accommodate the unique needs of families affected by ASD. Telecommuting, flex hours, and part-time work options can give parents the free hand they need to be there for their children. Parents of children with ASD will need to attend medical appointments, therapy sessions, or handle unexpected situations, and removing the stress of worrying about job security will go a long way to preventing stress and burnout.

And let’s not forget the power of empathy. Employee Assistance Programs (EAPs) offer a lifeline for parents like me, providing much-needed support and guidance when the weight of it all feels too heavy to bear. EAPs that offer confidential counseling, support services, and resources for employees and their families are amazing, and even just knowing that you have that tool available can lighten the emotional load for parents.

Five years after Ben’s diagnosis, our family has found our rhythm. Ben is thriving in his homeschooling environment, and his siblings have become his biggest champions. But our journey isn’t over, and there are still challenges ahead.

So, to all the HR leaders reading this, I urge you to listen, to empathize, and to take action. Together, we can create a workplace where families affected by ASD feel supported, understood, and valued. And that, my friends, would be a victory worth celebrating.

Kristen Donahoe, BSN, RN, CCM, is a Senior Director, Clinical Consultant for Luminare Health.

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