Autism Speaks,National Autism Data Center creating dashboard

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20 May 2023, 6:49 am

Autism Speaks And The National Autism Data Center Aim To Improve Care Services
Jennifer Jay Polumbo is the CEO of Wonder Woman Writer & Mom to two boys, one with autism

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.

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.

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.

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.

This is not a news article but a Autism Speaks public relations press release. There is not even the usual attempt to disguise this. It hits all their talking points. Earliest intervention possible that is a code word for ABA. When parents go to the Autism By Numbers site I am pretty sure they will be directed to the nearest ABA provider. “Through the lifespan” is right out of Autism Speaks’s mission statement. The article talks about children and young adults, that is not through the lifespan. For older adults it is the same old, same old, we don’t exist. The article ended with talk about beyond awareness to total acceptance. Anybody can go to a neurodiversity advocate website and use their language to virtue signal. I do see any mention of Autistic involvement.

To look on the bright side the fact that they feel the need to mention acceptance is progress. Conceivably the dashboard could help adult autistics find a clinician to diagnose them. Maybe the dashboard will not be as ableist as the article makes it seem, maybe its the author not the project. The article gives no reason to expect the maybes will become reality.

Either way a major demerit to Forbes for publishing this.

Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman