A Curated Guide

Resources for HIE and Autism Families

The organizations we found useful — and what took us so long to find them.

When Elijah was diagnosed, we had no map. We learned about the organizations on this page by accident — from other parents in hospital waiting rooms, from therapists who mentioned them in passing, from late nights chasing one link to the next. This page is the map we wish we'd had when we started. Every resource listed here is one we have personally evaluated and found genuinely useful for families navigating HIE, autism, or both.

We've organized this page into four categories that reflect the stages most families move through: understanding the initial HIE diagnosis, receiving the autism evaluation, finding the right therapists, and fighting the insurance and financial battles that follow. You will not need all of these at once. But you will probably need most of them eventually, and knowing where to look before the crisis arrives is its own kind of preparation.

The list is not exhaustive. We deliberately kept it short rather than comprehensive — this is the shortlist, not an index. These are the places worth your time.

HIE Support

These organizations exist specifically for families dealing with hypoxic-ischemic encephalopathy. What makes them different from general disability resources is that the people who run them have often been where you are. The communities are small enough that you can find other parents whose children are at the same stage of recovery, and specific enough that the information is actually relevant to what your family is going through—not generic advice about brain injury, but guidance calibrated to HIE and its specific long-term trajectory.

Autism

Autism resources range from excellent to actively misleading, and it can be hard to tell the difference when you're new to the diagnosis. The organizations we've listed here take a science-based approach—they don't promote unproven treatments, and they're honest about the range of what autism looks like. That second point matters especially for HIE families, because autism following a birth injury often looks different from idiopathic autism, and the resources need to reflect that complexity rather than flatten it.

Therapy & Development

Finding good therapists is harder than finding good organizations. These resources help with both—the major professional associations for speech-language pathology, occupational therapy, and applied behavior analysis all maintain searchable provider directories, and understanding what each discipline does before you start calling clinics makes the search considerably faster. They are also useful for understanding what good therapy actually looks like, so you can recognize it when you find it and recognize when you're not getting it.

Insurance & Legal

Insurance companies deny ABA therapy. Ours did it more than once, using a review process that excluded Elijah's HIE records and the opinion of every therapist who had worked with him. These resources helped us understand our rights and navigate the appeals process—including external appeals, which most parents don't know they can request. They also cover financial planning tools, including ABLE accounts and Medicaid waiver programs, that can make a material difference in a family's long-term capacity to provide care.

Other

Hope for HIE

Hope for HIE began as a virtual network of parents seeking to connect after their children had been diagnosed with HIE (Hypoxic Ischemic Encephalopathy). Since beginning on Facebook in 2010, the network has grown to serve thousands of families worldwide.

hopeforhie.org

HIE Help Center

Comprehensive guide for HIE families, including associated conditions like autism and cerebral palsy

hiehelpcenter.org

Nathaniel's Hope

Nathaniel’s Hope celebrates kids with special needs (our VIPs) as well as educates and equips communities and churches to provide FREE respite care and programs to enrich the lives of VIP families. Our programs are designed to provide hope and practical assistance to VIP kids of all ages and their families. They also give Buddies an opportunity to invest in the lives of VIPs!

nathanielshope.org