Navigating an HIE diagnosis is its own complex journey—and for some families, that path eventually leads to a second diagnosis: autism. In this Peer Perspective panel, Hope for HIE social worker Jen Schaefer was joined by community members Crystal F., Kacie M., and Crystal E., who shared their lived experiences at the intersection of HIE and autism. Together, they explored the diagnosis journey, daily life, school and therapy supports, and the hopes and lessons that carry them forward.
As with all Peer Perspective conversations, this panel is not medical advice. Instead, it reflects the reality that there is no single “right” way to feel, decide, or move forward. Below are key takeaways from this engaging and thoughtful discussion.
We're sharing the key notes from the Peer Perspective Panel, along with a link to the full video on YouTube.
The path to an autism diagnosis varied widely across all three panelists—and that, in itself, was an important point. Kacie's son, Cash, was diagnosed at age two through the developmental clinic that was already monitoring him as an HIE graduate, where regular neuropsychiatric evaluations caught the signs early. Crystal F.'s son, Colby, received a working diagnosis at two and a half, then an official diagnosis at three and a half after she noticed repetitive behaviors and was encouraged to seek a developmental pediatrician evaluation. Crystal E.'s son, Ethan, wasn't diagnosed until middle school—partly because he was already receiving so many of the supports he would have needed, and distinguishing HIE-related traits from autism-specific ones took time.
One consistent thread: for many HIE families, autism traits can be easy to attribute to the brain injury itself, making it harder to identify when a separate diagnosis may also be present. Panelists encouraged families not to wait if they have concerns, and to trust their observations as parents.
Hearing the word "autism" for the first time brings different emotions for different families. Kacie described knowing the diagnosis was likely coming, but still finding it hard when it was official—not because of the diagnosis itself, but because of the worry it stirred about her son's future. Over time, and with support from therapists and the autism community, that worry gave way to understanding and confidence.
Crystal F. described feeling validated—finally having a name for what she was observing and a clearer direction to look. Crystal E., who had already navigated so many diagnoses, said she felt largely indifferent at the time. "It was just one more bit of data," she shared. But looking back now, with her son nearing the end of high school, she is deeply grateful for that diagnosis—because it opened doors that would have otherwise remained closed.
The takeaway: however you feel when you receive this news—relieved, scared, sad, or even numb—your reaction is valid.
All three panelists agreed that an autism diagnosis, once in hand, created access to services and supports that might not have been available through HIE alone. ABA therapy, developmental evaluations, IEP classifications, Medicaid waiver programs, vocational services, and even college accommodations were all mentioned as things the diagnosis helped unlock.
Crystal E. shared a particularly striking example: her son's IEP and diagnosis documentation is now being used as he applies to universities, helping him access accommodations through College Board for the SAT and opening the door to services that follow him beyond the school years. "Sometimes you don't realize how much those little tiny pieces of paper matter," she said—for reasons that extend far beyond getting services in your school district.
Crystal F. noted that early on, her son's IEP was taken away in kindergarten because the school said he "wasn't severe enough." It wasn't until she moved districts and learned more about her rights that it was reestablished. Knowing what your child is entitled to—and advocating firmly for it—makes a real difference.
All three panelists spoke to a frustrating and common experience: having their child's autism traits minimized or dismissed by others, including professionals. Kacie described feeling like her son's struggles were sometimes overlooked because he didn't fit stereotypical expectations of what autism looks like. Crystal E. pointed to the rise of loosely used terms like "digital autism" being applied to neurotypical children who struggle socially—which can inadvertently minimize the very real and distinct challenges that autistic individuals face.
This minimization doesn't always stop as children age. Crystal E. warned that as kids get older and can appear more functional in some settings, it can actually become harder to be heard. Advocacy doesn't end at school age—and knowing how to advocate effectively, and persistently, is one of the most important skills a parent can develop.
Each family described a daily life shaped by their child's unique needs, with routines, supports, and challenges that change as their child grows.
For Kacie, whose son Cash is four, current challenges center around navigating large-group social situations and sensory sensitivities. Cash thrives in one-on-one play or small groups, but big birthday parties and loud environments can feel overwhelming. Some expected challenges—like potty training—went more smoothly than anticipated. Others, like sensory processing, have been an ongoing and evolving part of their daily experience.
Crystal F.'s son Colby, at 12, is in the thick of puberty's first phase—physical changes happening before developmental readiness follows. Hygiene routines, visual schedules, and careful balance between supporting him and allowing him independence are central to their days. She shared a quietly joyful moment: her son recently tried to cross the street to tell some kids their lemonade stand strategy wasn't working. "He was ready to go talk to strangers," she said. "That's a win."
For Crystal E. and her 17-year-old son Ethan, the focus has shifted toward what independence looks like in adulthood—managing relationships, navigating puberty 2.0 (the developmental side that arrives later than the physical), protecting his self-esteem, and preparing for what comes after high school. She also gently reminded the room that for those with children who are older and more complex medically, the fact that their child can be evaluated and diagnosed with autism at all is, in its own way, a sign of how far they have come.
School systems can be one of the most challenging arenas for HIE and autism families—and one of the most critical. The panelists offered hard-won guidance:
Fight for what your child needs, even when it isn't offered. Crystal F. shared that she didn't learn until years in that schools could provide support with hygiene routines—something she wishes she had known sooner. Ask questions, even the ones that feel silly. Speak up. You are your child's best advocate.
Don't be afraid to disclose the autism diagnosis in school settings. All three panelists noted that while there may be fears about stigma, the diagnosis has only opened doors for their families—never closed them. It can be used strategically: share it when it benefits your child, use it to access the services and accommodations they need.
Keep every piece of documentation. IEPs, neuropsychological reports, evaluations—these documents matter long after school ends. As Crystal E. explained, they resurface when applying for college accommodations, state waiver programs, vocational services, and more. "Always be collecting that paper trail," she said.
Don't jump off waiting lists. Crystal F. noted the danger of leaving an ABA wait list during a period of apparent stability—only to need it again months later. The wait times are long, and it's better to stay on the list and decline when the spot arrives than to start the clock over.
All three families were familiar with the foundational therapies—speech, OT, and PT—that often begin in the HIE journey long before an autism diagnosis arrives. But the conversation opened up to some less commonly discussed options:
Kacie shared a genuinely positive experience with ABA therapy started early (within about a month of Cash's diagnosis), which she credits with helping him progress from a Level 2 to a Level 1 autism classification by age three. For their family, it was play-based, goal-oriented, and focused on speech and sensory development.
Crystal E.'s family approached therapy from a neuroplasticity-first philosophy from the very beginning—aquatic therapy, hippotherapy, hyperbaric chamber, prompt therapy for speech, behavioral support in the home, PSR, and respite-based community integration. As Ethan has gotten older, OT has shifted from fine motor to life skills—money management, community navigation, building independence.
Crystal F. recently discovered Parent Management Training through a pediatric neuropsychology office—not therapy for her son, but support for her as the parent, helping her implement strategies in their home. She had never heard of it despite being in this world for 13 years. "Don't stop searching," she said, "because you will uncover something under a rock somewhere."
The consistent message: what works will look different for every child. Don't let the standard list be the ceiling.
More than once, panelists described the emotional whiplash of watching a skill emerge, disappear, and slowly return. Potty training. Hair washing. Making a peanut butter sandwich. Showering independently. These are not linear processes, and setbacks do not mean the work was wasted.
Crystal F. offered a grounding reminder: her son started making his own sandwiches last year. It's messy. But he's doing it. And that—the doing of it—is what matters.
Progress is not always visible in a straight line. That doesn't mean it isn't happening.
As children grow older, the relationship between parent and child changes in ways that aren't always easy to anticipate. Crystal E. shared a tender, telling moment: she went to help her son clean something off his face, and he made clear he didn't want her in his space without asking first. She had to shift her thinking. "This is his world. This is his life."
She now asks permission before helping—and has shared that expectation with his other caregivers too. It's a small thing that carries enormous weight: our children, even those with significant support needs, deserve to be asked. Their autonomy matters.
Each panelist offered a closing thought for families who may be just beginning to wonder whether autism is part of their child's picture.
Kacie encouraged early intervention above everything else. "If you can get into therapies, if you can get into early intervention—do it," she said. "Their brain is moldable. Take advantage of that window." She also wondered aloud whether HIE-related autism may respond to therapy in ways that are somewhat unique—and expressed hope that more research and community conversation will continue.
Crystal E. made a passionate call for advocacy—not just the asking, but the learning how to ask. "Be the river that carves the path, or the flood that smashes everything—whichever approach gets results for your kid." She reminded families that it is never too late to advocate, and that the end goal matters more than the specific path to get there. "What do you want this to accomplish? Focus on that. There are so many creative ways to still get there."
Crystal F. offered hope. "There's hope in everyone's story. It's going to look different." She described the long, rigid days with her son—and the unexpected moments when he surprises her with flexibility, or reaches out for a hug. "I just tear right up. And I think: we're having a good day. We're going to be okay."
Panelists highlighted several resources that supported them along the way:
If you need help navigating resources or connecting with support, please reach out to our team.
Navigating HIE and autism together is its own kind of journey—layered, unpredictable, and filled with both challenge and unexpected grace. The three families who shared their stories in this panel are a testament to what it looks like to keep showing up: fighting for services, staying on wait lists, attending IEP meetings, learning how to ask, and cherishing the small wins.
You are not alone on this road. And there is hope in every story—including yours.
Thank you to Crystal F., Kacie M., and Crystal E. for so generously sharing your lived experiences and insights in this Peer Perspective panel. Your voices bring connection, understanding, and real hope to families navigating HIE and autism together.
To watch the full Peer Perspective Panel or to read our key takeaways at a glance, click the buttons below!
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