Empowering Families to Manage Autism

Not long before my youngest son’s fourth birthday, I was called in to the office at his daycare. 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), and his screaming was an attempt to soothe himself when the world got to be too much.
 
We didn’t understand what he was going through, and we would spend the better part of a 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.



Like I said, we were lucky. Not everyone is. That’s why I’ve spent the years since Ben’s diagnosis educating families and employers about ways to improve access and understanding for kids with ASD as well as support from employee benefits. Understanding the need for aid, and how employers are uniquely positioned to provide it, can make a huge difference in the lives of these kids and their families.

 

You Don’t Know What You Don’t Know

There’s a saying among ASD families: if you’ve met one kid with Autism, you’ve met one kid with Autism. ASD is a neurodevelopmental condition that manifests in many ways, and each person’s experience is going to be unique. This can make recognizing ASD symptoms more difficult for parents. I know from personal experience. There are useful educational resources regarding symptoms at Autism Speaks, the Autism Society, and the University of California at Davis, which employers can and should make available to their people through wellness fairs, employee communications, or the office intranet, for example.
 
The first ever diagnosis of Autism was made in 1943, meaning that this field of medicine is only 81 years old. Our understanding of the disorder is still evolving. Is it a rare disorder[1], or one that hides in plain sight? Why are so many more boys diagnosed[2] 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.
 

What We Do Know

In the past few decades, our understanding of ASD has grown by leaps and bounds. For example, researchers have found a wide range of comorbidities[3] 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, and supporting parents in these cases may mean relaxing limits on annual cleanings, for instance, or expanding access to other health benefits.
 

What We Can Do

When Ben was diagnosed, it was the culmination of about two years of visits to doctors and more doctors, to specialists for tests, 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. Benefits administration is never going to be cool or exciting, but it is so important, and making sure we do our jobs well means making it easier for families going through an incredibly difficult time. Quick, effective administration makes a major difference in the lives of families like mine, and employers should make sure their benefits are being administered well.
 
Another major way for employers to improve the lives of their ASD families is to make sure their benefits 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. It is a truly fascinating area of study, and I encourage anyone interested to take a deep dive into the history and research around its efficacy. 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.
 
A move like that is incredibly disruptive, and scary, for a family, and not one taken lightly. Luckily, more employers are beginning to cover ABA therapy, particularly as mental health parity laws[4] come into effect, so fewer families like mine are faced with that choice. Employers who proactively cover ABA therapy will, naturally, improve their ability to retain their people in these situations.
 

The 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. We still have mountains to climb, though. Ben has been diagnosed with epilepsy, and we’re figuring that out, together. His journey inspires me, every day, to help other families navigate this world, too. And I am grateful to be part of a company that is working to expand our understanding of ASD and to increase access to the resources and benefits needed to improve the lives of kids with ASD and their families.

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