Do your caregiving benefits support parents of neurodiverse children?

Any working parent knows how tough it is to raise a child and grow a career. For parents of neurodivergent children, those challenges can be more nuanced, more time-consuming, and more isolating. 

According to the CDC, around 17% of kids ages 3-17 have a developmental difference, as reported by their parents, including autism spectrum disorder and learning or intellectual disorders. Multiple studies show that parents of these children often report higher levels of stress, and broadly report struggling to access the support they need.

Debra Isaacs Schafer has dedicated decades of her career to these parents, and as the mother of a neurodivergent child who is now an adult, she is familiar and well-versed in the experiences they face. The former co-founder and CEO of Education Navigation — which provided support for caregivers as an employee benefit — now serves as a consultant and adviser to families that are raising neurodiverse kids. 

Read more: Cleo expands its benefit platform to support parents of neurodivergent children

Schafer recently spoke with EBN about why these caregivers need support, why the conversation around this large community is spoken in a whisper, and how employers should consider stepping up to boost wellness and retention. 

What are the specific challenges and nuances of raising a neurodivergent child that employers may be unaware of? 
It's an ebb and flow of chronic and crisis issues. Something occurs with your child and you are prepared for it — that's the chronic part. But it's the unpredictability that often creates the greatest challenges for parents. Employers need to understand parents of neurodiverse children need workplace flexibility. That's it. I've lived it, and I understand those needs, and without flexibility, you cannot navigate your child's needs and your career. It's impossible. 

What are some of the most overlooked needs or responsibilities of these caregivers? 
The number one time-need is related to school. I'm the former founder and CEO of Education Navigation, which provided support to workers as an employee benefit. We did research and found that working parents spend up to 12 hours a week on school issues, more than we had anticipated. And as the child grows, their needs change, and their educational requirements change. There are so many schooling options — public, private, homeschooling, cyber — and parents will often make changes or look for alternatives. 

Read more: 4 ways employers can combat stigmas surrounding neurodiversity

Where can employers help on this journey? 
A large company may provide $20,000 to working parents to address infertility issues at the family-forming stage of life. But the next phase of life is what I call family functioning, and there we may see companies offer on-site child care or stipends for care. But if you're giving $20,000 to parents dealing with infertility, provide that same amount of money to working parents who have neurodiverse children. For working parents, that could help address things like evaluations, private services and support, specialized child care — it would be a huge burden lifted. 

In your experience, what's stopping them from providing this support? 
Unless you've got a corporate climate where open communication happens, self-disclosure just doesn't. Our research has shown that employees are more comfortable to share with their manager that their parent is in early-stage dementia than they are that their 5-year-old is on the autism spectrum. A lot of companies are launching employee resource groups (ERGs) for parents of special-needs children, and that's important, but it's also preaching to the choir. So we need to back that train up a bit and say: What's the culture? What's the communication? Do I feel safe? Do I want my manager in this ERG meeting where I'm discussing my challenges and frustrations? It's a delicate dance and an interconnected web. But we can do better.