Governments nationwide are working to improve the accessibility of digital services, from data collection to emerging technology.
The U.S. Department of Health and Human Services (HHS) announced its intention April 21 to collect health data for autism studies, and National Institutes of Health (NIH) Director Jay Bhattacharya said the NIH would create a “new disease registry” of people nationwide with autism, which sparked concern from advocates. HHS has since denied it will create such a registry. The HHS secretary has been criticized by advocates for a statement calling “an end to” autism.
As the federal government solidifies its strategy to support people with autism, states are leveraging technology to better serve this population.
PLATFORMS TO CENTRALIZE AUTISM RESOURCES
In California, officials launched theAutism Resource Hub in November 2024, to support the growing number of individuals with an autism diagnosis, according to Lauren Libero, the autism program specialist in the California Department of Developmental Services (DDS) who oversees its Autism Services Branch.
This trend is not unique to California; according to 2022 data, 1 in 31 children has autism. Experts attribute the higher prevalence of autism in recent years to better access to screening and an improved understanding of autism.
“What we heard through our helpline was individuals and families were really having trouble finding helpful information about autism,” Libero said, explaining this led to the hub’s creation.
There, users can find resources for autistic individuals, family members, caregivers and professionals. Resources include supportive apps for kids, employment aids for professionals, and a fact sheet on privacy rights. The hub also offers value for policymakers, Libero said, including informational materials and data on caseload characteristics, and state activities to support this population.
“Autistic individuals are part of their communities and deserve to be valued and included in policymaking,” Libero said.
California is looking to develop additional resources like updated screening and diagnosis guidelines, expected to be released later this year, Libero said. The state is also exploring additional video-based content — including translations — to support people with low literacy.
DDS works with other state departments to inform the hub’s development, and it also hosts a quarterly autism focus group of advocates served by California Regional Centers, who offer insight to improve the platform.
The state uses Google Analytics to monitor platform usage, Libero said. It has had thousands of visitors, and engagement is increasing by the month.
Minnesota’s online resource hub, the Minnesota Autism Resource Portal, launched in January 2020, and has since been updated and expanded. The goal, according to the Minnesota Department of Human Services (DHS) Autism Policy Lead Nicole Berning, is to create a centralized access point for reliable resources that could be used by various entities and state departments that serve people with autism. The platform offers decision-makers information on policies that may apply, and data and research on key areas.
To inform the portal’s creation, DHS worked with other state departments, advisory groups, and adults with autism. Officials have prioritized keeping information about basic supports like medical assistance programs, housing and economic assistance at its forefront, Berning said. They’ve also prioritized the display of frequently searched content like screening and diagnosis resources.
Minnesota uses Google Analytics to monitor the platform’s usage, Berning said. In the past year, it has seen over 46,000 visitors and about 120,000 views, which she said demonstrates users are returning to it.
DHS is focused on early intervention, to provide screening, diagnosis and support. The state is also exploring additional features that would let users filter resources by their role, such as caregiver or family member.
For other states developing similar platforms, Berning advises them to prioritize community input and be aware needs may evolve over time: “Be flexible, but know your purpose.”
A NEW (VIRTUAL) REALITY
Resource hubs are not the only way states are supporting people with autism. In 2023, Colorado’s Department of Human Services (CDHS) launched a pilot using virtual reality (VR) technology to train staff at one of its regional centers to better serve people with disabilities.
Since that launch, VR use has been expanded to all three regional centers, Elaine Fisher, staff development director for the Colorado Division of Regional Centers, said via email.
The state primarily uses VR in new employee orientation, Fisher said; in feedback, 88 percent of respondents said they felt prepared for their roles after the training, and 93 percent would recommend this orientation process to others.
“These findings underscore the value of both traditional and immersive learning technologies in preparing our workforce and supporting high-quality, individualized care,” she said.
CDHS has been working closely with Embodied Labs to develop a new module on autism for its VR training program, expected to launch later this year, the company’s Vice President of Clinical Innovations Carrie Cusker said via email. The module includes three distinct narratives — including a medical appointment — to offer learners insight into the experiences of someone with autism.
The immersive experience, Cusker said, “serves as both an educational and advocacy tool.”
