Employees and ASD: One benefit manager’s story

Right before my youngest son’s fourth birthday, I was called in to the office at his daycare. My son, Ben, had been screaming in class, and the manager told me that I had to find a new place for my son because “we can’t handle kids like him.” I was completely blindsided. I didn’t know it at the time, but I was raising a child with Autism Spectrum Disorder (ASD). His screaming was an attempt to soothe himself when the world got to be too much.

We spent most of the next year chasing down doctors, scheduling appointments with out-of-state specialists, and endlessly struggling to access vital resources before we would finally get a diagnosis for Ben. And we were lucky. I have a background in the medical industry. My husband had a job with fantastic benefits. And it was still an uphill fight for our family to find out what was happening with Ben, and how to help him.

Despite my struggles the good news is HR leaders and brokers, like you, are uniquely positioned to help. You can play a key role in helping educate clients and employees about ways to improve access and understanding for kids with ASD as well as providing support from employee benefits.

Knowing is half the battle

The first-ever diagnosis of Autism was made in 1943—this field of medicine is just 81 years old, so our understanding of the disorder is still evolving. Is it a rare disorder, or one that hides in plain sight? Why are boys diagnosed with ASD at four times the rate of girls? Doctors are finding answers, and even more questions, every year. Sharing new developments, and what they could mean, is key to building understanding.

You can find—and share—useful educational resources at Autism Speaks, the Autism Society, and the University of California at Davis. These are key resources you can and should share with employees through wellness fairs, employee communications, or your corporate intranet.

Through research, our understanding of ASD continues to grow. For example, researchers found a wide range of comorbidities among children with ASD. According to a study published in the World Journal of Clinical Pediatrics, children with ASD have an elevated risk of some genetic disorders such as Fragile X syndrome and Down syndrome, neurological disorders including epilepsy, cerebral palsy, and migraines, as well as sleep disorders, gastrointestinal disorders, mitochondrial disorders, neuroinflammation, immune abnormalities, allergic disorders, and other disorders.

In addition, 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. Employers need to 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.

The role HR leaders, brokers can play

When Ben was diagnosed, it was the culmination of about two years of doctor visits, tests with specialists, an ENT surgery, and finally confirmation of the diagnosis. It was, to put it mildly, a difficult experience. As a benefits professional, and a mom of a kid with ASD, I recognize the importance of removing obstacles in this journey. I know benefits administration isn’t the most exciting job, but it is so important. And making sure we do our jobs well makes it easier for families going through an incredibly difficult time.

So, what exactly can we do? For starters you should make sure your benefits package cover Applied Behavior Analysis (ABA) therapy. ABA is a gold standard treatment for autism, which 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, that 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.

Another good idea: Offer more flexible work arrangements. This can be another key benefit for parents of kids with 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.

Related: Revolutionizing employee benefits: Tackling the childcare crisis to retain top talent

Finally, Employee Assistance Programs (EAPs) can also help. Parents of children with ASD often feel like the world is closing in on them. They don’t know where to turn for help. Access to EAPs can reduce that stress and insecurity. 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.

Our “new normal”

It’s been five years now since Ben’s diagnosis, and we’re in a pretty good spot, as a family. Ben is homeschooled now, and he continues to thrive. His older brother and sister have grown into the most caring, supportive kids a mom could hope to raise. His journey inspires me, every day, to help other families navigate this world, too. And I’m hoping it might inspire you, too, to expand your understanding of ASD and to increase access to the resources and benefits needed to improve the lives of kids with ASD and their families.

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