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For over a decade, Heather Hegedus was a trusted face of Boston 25 Morning News, commuting before the sun rose from her home in Westwood to WFXT’s Dedham studio to walk viewers through what they needed to know as they prepared for their days. Across town at WBZ-TV Channel 4, her husband, Tom McNamee, was behind the camera, capturing the news. Their combined passion for storytelling was evident.
While they helped shape the news in Boston, a more personal story was unfolding at home, one that would eventually lead Heather to leave the anchor desk and assume a role she never anticipated: a national advocate and ambassador for the profound autism community.
NEWS ROOTS
The couple’s story began at WFSB, the CBS affiliate in Hartford, CT in 2007. Heather served as an Anchor/Reporter and Tom, a videographer, and together they formed a partnership that eventually delivered them both to the Boston news scene.
“In 2012, I got a call from the news director at Boston 25 asking me to apply for an anchor job.” Heather said. “I started as Weekend Anchor, and then I was promoted to Weekday Morning Anchor.”
Tom followed his future wife, joining the WBZ team, where he currently serves as the station’s Chief Photographer. While they covered news across the state and New England, when it came time to choose a place to raise their family, Westwood was the clear choice.
“We didn’t just settle on Westwood; we found Westwood and loved it for the schools and community feel,” Heather clarified when I asked how they settled on Westwood. “I wanted to be close to work because I had to be on-the-air at 4 a.m. We also live within walking distance of downtown and Buckmaster Pond.”
Heather recently transitioned from local news to a new role at Fidelity Investments, where she hosts Market Sense, a weekly, live financial podcast about the markets and economy with more than 3.5 million views to date. Heather comes up with each week’s topics and arranges the guests, including some of the company’s brightest leaders.
In many ways, the move to Fidelity came as a result of unprecedented uncertainty facing local TV journalism.
“Local news is facing a major shift because people are cutting the cable cord and consuming news on their phones, computers or streaming services,” Heather explained. “Companies have created their own digital platforms, so they no longer need legacy or traditional media to act as a middleman. Did that change the landscape for local stations? Sure, and it opened new doors for journalists to put their expertise to work in spaces that didn’t exist for us before.”
SHIFTING PURPOSE
This shift in Heather’s career coincided with her growing role as a mom and advocate for her 10-year-old son, Brooks. Before Brooks was a month old, Tom and Heather got a call that Brooks tested out-of-range on the Newborn Screen for some immune system markers which can indicate a child has Severe Combined Immune Deficiency or SCID. They were rushed into Boston Children’s. They then spent the first year of Brooks’ life afraid to take him out in crowds. When he hit the one-year mark, immunologists felt Brooks’ immune system was showing reassuring signs. However, at the same time, Tom and Heather began noticing Brooks wasn’t meeting milestones like feeding himself, talking or walking.
At 18 months, Brooks received an autism diagnosis – on the earlier side of when children are typically diagnosed.
“There is no medical test, like a blood test, to diagnose autism, but the developmental specialists we worked with were able to pinpoint right away that Brooks wasn’t doing many of the main things neurotypical babies and toddlers do,” Heather said. “He was babbling less than a kid who is developing more typically, but he also was lacking non-verbal skills, like pointing at something of interest. He wasn’t responding to his name. We had a big, 100-pound dog, and he didn’t seem to notice the dog. He also wasn’t playing appropriately with toys – he would get ‘stuck’ on something like the handle to a baby gate – he’d just want to lift it up and down for what felt like hours. I kept buying new toys, thinking, ‘maybe we just don’t have the right toys?’”
Tom remembered receiving the initial diagnosis and feeling, in many ways, the same as he does today.
“It was devastating, and we’re still trying to wrap our heads around it every day,” Tom admitted. “But we don’t have a choice. We power forward with what we have, and Brooks is an amazing little guy.”
Heather realized early on being a parent to a child with significant needs meant becoming an overnight advocate.
“When we got the diagnosis, we went through a real grieving process as if someone had died, but we were grieving the life we just assumed we would have, and, in a way, grieving for our son,” she said. “Another mom said to me, ‘Well, now you get to be an advocate.’ I told her, ‘But I didn’t ask to be one.’ Because the waitlists for specialists and services are long, and Brooks needs accommodations to be included in anything from school to activities, we knew we owed it to him to get him the supports and services he needs to help him live the best life he possibly can.”
WHAT IS “PROFOUND AUTISM?”
One of the primary goals of Heather’s advocacy is to raise awareness about the specific term “profound autism.” The new term is increasingly being used by the medical and research community to distinguish a subgroup of children and adults with autism who require lifetime 24-hour supervision and support to stay safe and healthy.
Individuals with profound autism are nonverbal or minimally verbal, often have an IQ under 50, and are unable to perform daily activities on their own, such as dressing, brushing their teeth or going to the bathroom. They may be unable to express if they’re in physical pain or if someone hurt them.
“Researchers are just beginning to identify several distinct subtypes of autism,” Heather explained.
Heather now serves on the board of the Profound Autism Alliance to raise awareness and bridge the gap in research, started by her friend and mentor, Judith Ursitti, a fellow profound autism mom in Dover.
“A study was done by an autism journal in 2019, and it showed only 6% of clinical research studies include participants with profound autism,” Heather said. “So that means 94% of the studies out there aren’t applicable to kids like Brooks. He also suffers from a medically complex profile involving immune system and gut issues, so we need research into what’s causing his medical issues so we can effectively treat them.”
Last year, Brooks was one of only 60 kids in the entire country chosen to participate in a clinical trial involving Microbiota Transfer Therapy, designed to restructure Brooks’ gut microbiome by removing harmful bacteria and introducing healthy, purified microbes from screened donors.
The success of the MTT was short-lived; when Brooks stopped taking the MTT capsules, his gut issues returned.
“Autism is a spectrum, and Brooks is definitely on the most severe end,” Heather said. “With Brooks, it’s about more than neurodiversity. Having profound autism likely entails medical and safety layers that include self-harming behaviors.”
IT TAKES A VILLAGE
Heather, Tom and their five-year-old daughter, Maddie, have learned how to meet Brooks where he’s at.
“Brooks prefers to keep to himself, particularly after a long day of school,” Heather said. “But Maddie is so determined to get him to engage with her and is such a spitfire. It’s so fun to watch her walk up to him and try to get him to acknowledge her through something Brooks enjoys – maybe it’s one of his favorite songs. She really loves her brother. And that interaction is so important for Brooks’ development.”
Heather said she used to worry about explaining autism to Maddie, but Maddie’s understanding happened organically.
“She never had that moment where she had to ‘accept’ it like Tom and I did, because we had a period of our lives before autism. Maddie never did. She just grew up with it, and she doesn’t see Brooks’ behavior as ‘autism.’ She just sees it as Brooks being Brooks. She’s a very intuitive and compassionate child who is wise beyond her five years.”
Maddie even helps Brooks use his Augmentative and Alternative Communication (AAC) device to learn how to express his wants and needs.
“Maddie sometimes chases Brooks around our house with the device, playing ‘speech therapist.’ I wouldn’t be surprised if she ends up in an autism-related career field, like many autism siblings,” Heather said.
The family’s connection to Westwood has been a source of strength. The school system and Brooks’ Westwood ABA or “WABA” school team have been incredibly supportive, along with Shalom Corner at Temple Beth David, where Maddie attends preschool.
However, raising a child with profound autism comes with layers of complexity that the family wishes more people understood.
“Think about what we have to do every day just to make sure he’s safe and cared for, because he needs 24/7 support,” Tom said. “We both work full time in Boston, so we have to make sure there’s always somebody who has eyes on him and is helping him with things, like going to the bathroom. It takes a village and we’ve been so fortunate to have therapists, babysitters, neighbors, family, friends and fellow autism parents here who ‘see’ us and don’t hesitate to pitch in. We literally couldn’t do it without them.”
AUTISM MISCONCEPTIONS
Heather also expressed concern about how autism is portrayed in the media.
“The Telepathy Tapes is a podcast a bunch of friends have asked me if I listen to, and I think there is a danger in glamorizing autism and making it seem like a superpower when there are some families, like ours, who are truly struggling to get through the day sometimes. Or shows like Love on the Spectrum may lead people to think that’s what autism always looks like, but there’s this saying that, ‘if you’ve met one child with autism, then you’ve met one child with autism.’ Because it truly is a vast spectrum.”
Heather hopes people will learn to ask questions rather than make assumptions.
“A great way to approach it if, say, you learn a friend has a loved one with autism is to start by asking: What do I need to know about [name of the person]?’ And then ask what you can do to support not just the individual, but their family. Some families may feel isolated, because sometimes it’s hard to even leave the house and engage in typical activities. Raising a child with special needs can cause a tremendous emotional, physical and financial strain on the entire family,” Heather said.
PAYING IT FORWARD
Today, Brooks continues to work hard, often clocking 40 hours per week in therapy between school and home. His happy places are hammock swings and trampolines.
“That’s one of his strengths; he taught himself how to use the trampoline and how to even do cool, twisty moves,” Tom said.
While their daily lives look different from other families who routinely head to weekend sports games, there is purpose in each achievement, each milestone, and each day… as Brooks’ parents try to help him learn the life skills he will need when they are no longer there.
People with profound autism are individuals who bring value to the world and deserve to be seen, heard, and supported. Their challenges should not be shameful, nor should their limitations carry stigmas. The McNamee family continues to be a resource for others who are just starting their journey with a new diagnosis, and they’re passionate about helping others navigate the path they’ve been on for years.
In their Westwood “village,” where neighbors have embraced the adorable 10-year-old as simply “Brooksy,” the McNamees have found something more valuable than a lead story: they’ve found a community that understands behind every clinical diagnosis is a child who is deeply loved, and a family that will never stop being his voice.