Autism Speaks And The National Autism Data Center Aim To Improve Care

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In April 2023, Autism Speaks brought together data sources to address gaps in nationwide autism data with the launch of Autism by the Numbers, created in collaboration with the National Autism Data Center at Drexel University.

“Autism by the Numbers is a dashboard that centralizes information on autism services and supports available across the nation and data sources in an accessible, authoritative hub. In addressing gaps in access to nationwide autism data,” explained Keith Wargo, President and CEO of Autism Speaks. “We believe this innovative tool has the potential to better support the diverse needs of all people with autism.”

It also aims to foster insights into the systems that serve autistic individuals, spotlight accessibility of supports and services, and enable advocacy in key areas for the autistic community.

What The Dashboard Hopes To Accomplish

Autism Speaks and the National Autism Data Center at Drexel University collaborated in conceptualizing the project, identifying data sources, and analyzing and visualizing the Autism by Numbers tool. Autism Speaks is dedicated to creating an inclusive world for all individuals with autism throughout their lifespan.

The National Autism Data Center strives to house and utilize data to create meaningful information for autistic individuals, their caregivers, policymakers, service providers, and stakeholders seeking to improve care systems.

Together, they hope that the Autism by Numbers tool will encourage autistic individuals, families, advocates, and researchers to understand better the utilization of select autism services, outcomes, and policies across the U.S., including early diagnosis and intervention, healthcare costs, and transition to adulthood.

In delivering visibility into the landscape of autism services and supports, Autism by the Numbers offers a tool to facilitate planning and advocacy.

“People and communities need data that can be accessed and used to navigate systems. Whether it’s getting an autism diagnosis and linking to needed services, to understanding policies where they live,” said Jessica Rast, Research Scientist at the National Autism Data Center at Drexel University. “Together, we are exploring additional data sources and identifying solutions across communities through Autism by the Numbers.”

“We know how broad the autistic community is and that there is a large spectrum of needs across the lifespan,” said Wargo. “Yet, often, members of this community do not know where to find the resources, data, or support that will best serve them; this applies to areas ranging from education, healthcare, and employment. Therefore, we saw the need to pull together comprehensive data from across the nation and make it easily accessible to all community members better to address their concerns in key areas and life stages.”

Addressing Waiting Lists

Given the recent increase in autism prevalence, the need for more autism care (including more centers and employees) and diagnostic opportunities. Recently, there have been reports of families being on wait lists to see specialized pediatricians. Parents are on wait lists that are months and months out, which only prolongs a child’s opportunity to receive care.

Given that in the U.S., as many as 25% of children are at risk for a developmental delay, and autism is estimated to affect 1 in 36 children, Mr. Wargo feels that ABTN may help address the needs of these increasing numbers. “Our hope is that Autism by the Numbers will support the autistic community in mapping out a path for their future,” Wargo shared. “We have also developed several programs at Autism Speaks to help reduce wait time as part of quality improvement for clinical care.”

What Options Do Parents Have

Research shows that early diagnosis and intervention can have a positive lifelong impact on people with autism. In addition, interventions that started before age 4 may improve cognition, language, daily living, and social skills and jumpstart the planning process for special education services and other public programs. Families can leverage the information on the dashboard to make more informed choices.

And as research further highlights the effectiveness of caregiver-mediated interventions, other accessible resources for families include the World Health Organization’s Caregiver Skills Training Program, which was created with the support of Autism Speaks to teach caregivers skills that can help their child’s development.

Suppose families live in a state without access to early intervention or a proper doctor who understands autism. In that case, Amanda Woodman, Clinical Director of Springtide, suggests parents continue to advocate for their child no matter what.

“A child’s most dedicated and supportive advocate is usually a parent,” Woodman advises. “Find a pediatrician who will listen to your concerns, provide you with quality care, including developmental evaluation, and support you in finding resources for your child. You may also want to get involved with local and regional parent support groups that can help you access resources and who will join you in advocating for your child’s rights to effective treatment with lawmakers.”

Total acceptance of autistic people – beyond simple awareness – should be the societal standard. Initiatives like Autism by the Numbers aim to recognize this and the unique needs of the autistic community.

Still, we must stand together to truly deliver opportunities that celebrate the full spectrum of individuality and foster real inclusion. Together, we can achieve a world where every autistic person can reach their full potential, just as any neurotypical can.

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