Neurodiversity in Families: Innovative Ways for Employers to Support Parents

BY Emily McCrary-Ruiz-Esparza | August 02, 2023

There are more than 11 million children with special needs in the U.S., according to the National Institutes of Health. For the parents of those children, the responsibilities are many and often changing—family life is different, which means their work life will be different too. How can employers make it better?

“Parents will tell me, I don’t need pity, I don’t need sympathy,” said Angela Nelson, executive director of clinical services at RethinkCare, a virtual platform for behavior and mental health needs. What they do need, she says, is flexibility, reassurance, and recognition. 

“We’ve heard from families that they really need flexibility. That’s probably the No. 1 thing.” They also want reassurance, said Nelson. “Reassurance that they’re not going to lose their job or be discriminated against if they disclose that they have a child with a disability.”

Parents of neurodivergent children appreciate the recognition that their experience of parenthood is atypical. “A lot of families I’ve talked to have said things like, ‘It was really wonderful when a colleague said, ‘You had that big doctor’s appointment or that neurologist’s appointment you’ve been waiting for for so long, how did it go?’ Or, ‘How are you doing? Not just your child, but how are you doing?’”

Neurodivergence comprises a broad spectrum of conditions, but it often describes people who have Down syndrome, sensory processing disorders, intellectual disabilities, mood disorders (like bipolar disorder), Prader-Willi syndrome, Tourette syndrome, or are on the autism spectrum. No experience with neurodivergence is alike any other, but caregivers commonly shoulder a longer list of responsibilities.

During From Day One’s July virtual conference on personalized approaches to family health, I moderated a panel of four leaders in HR and clinical mental health titled “Neurodiversity in Families: Innovative Ways for Employers to Support Parents.” Nelson and the other leaders discussed what they’ve learned about supporting parents who care for neurodivergent family members.

Give Them Flexibility 

Consensus among panelists is that parents with neurodivergent children and family members need flexibility, perhaps even more than other families. They might be needed at regular school meetings or doctor’s appointments, or they might require the ability to work from home during certain periods of the day or week. 

For employees whose income depends on the ability to be physically present at a work site, flexibility can be tougher to come by. At Keysight Technologies, a company that makes testing and measurement equipment, on-site manufacturing-division workers have more leeway than is typical for the sector.

Gloria Estrada, the company’s VP of total rewards and HR services, said employees can often choose the shift that best suits their schedules, plus “we can also set up partnerships where a couple of employees cover an environment and a timeframe–then if they need to be off, they can be off.”

In some cases, flexibility can also be bought by helping parents to coordinate the search for caregivers and other providers, which can be time-consuming. Caring for a child who is neurodivergent can play a major role in parents’ ability to work full-time, and single parents are more at risk for disruptions to work schedules. Mothers of children with special needs often report changing or quitting their jobs or reducing their hours to care for their kids.

The panel of speakers, clockwise from top left, moderator Emily McCrary-Ruiz-Esparza, Gloria Estrada of Keysight Technologies, Jeanne Walsh of Boston Scientific, Candace Damon of Northwestern Mutual and Angela Nelson of RethinkCare (Image by From Day One)

Concierge services that handle research for workers—research about care providers, educational or behavioral counseling services, even their child’s legal rights—can lighten the workload for parents. That’s why Keysight provides its employees with such a benefit.

“The stress of having to find the right provider is almost as much as doing the logistics of it, just thinking about what it takes, who I should look for, and what is available,” said Estrada. “This particular provider really helps ease not just the burden of the workload, but the mind of the employee.”

Make It Easy to Access Resources

Whatever you provide, make it simple to access and teach workers how to use it. Candace Damon, the VP of field rewards at the life-insurance company Northwestern Mutual, recently documented employee resources and their use cases.

“We offered a bunch of support services, but we found that it was really hard [for employees] to navigate, given all the services we provide,” she said. “So we recently came out with a toolkit that helps them identify what organizations to work with on which topics, then those organizations help get them to providers.” 

Having it all documented is especially helpful to newcomers and to employees whose family member has received a diagnosis for the first time, plus it helps preserve privacy for workers who want it. “They can reach out to these third-party providers and get the support they need without one of their field leaders knowing or without one of the home office employees knowing,” Damon said. “It’s between them and those that they are searching for guidance from.”

Train Workers and Managers on Neurodiversity

Jeanne Walsh, the director of benefits and global mobility at biomedical engineering firm Boston Scientific, acknowledged that despite having an extensive policy to be proud of—including ample time flexibility and a concierge service—more remains to be done. 

“What we need to do more is in manager training,” she said. “The best policy in the world isn’t effective unless there is awareness, especially from our people managers, that the needs of this particular demographic are really quite unique, and therefore need a higher level of support than someone who doesn’t have this challenge.”

Employee resource groups can connect workers with the services they need in an environment where they already feel comfortable. Walsh works with Boston Scientific’s resource groups to conduct sessions about resources for parents with neurodivergent children. 

“Across benefits, the biggest challenge is awareness and making it easy for employees to get resources,” she said. “Corporate benefits can send out all the communications in the world, but the ERGs are the boots on the ground.” 

Colleagues need an understanding of what it means to care for a neurodivergent family member, and Damon’s team is trying to address that in public forums. “We’ve done a lot in the space of diversity and inclusion and creating psychological safety for our field members, from things like talking about it on the main stage at our annual meeting and at our regional meeting, to group sessions and discussing what it’s like to have neurodivergent family members.”

Walsh too is making a point of destigmatizing behavioral health matters, whether it’s for the employees themselves, a child, or a spouse. “One of my colleagues in DEI, her overall philosophy is to lead with kindness,” said Walsh. “It’s making sure that we’re having those conversations at all levels, that people are seeing it from leaders within the organization, from their managers, from human resources—trying to make it easier for people to discuss the situations they have at home.”

Emily McCrary-Ruiz-Esparza is a freelance journalist and From Day One contributing editor who writes about work, the job market, and women’s experiences in the workplace. Her work has appeared in The Washington Post, Quartz at Work, Fast Company, Digiday’s Worklife, and Food Technology, among others.

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