Thought Leadership & Innovation Foundation Supports Families Impacted Autism Spectrum Disorder: Robust Medical Research and Programs
The Thought Leadership & Innovation Foundation (TLI) is focused on support and education for the autism spectrum disorder (ASD) and opening opportunities to address the many challenges for reaching an ASD diagnosis. Each individual affected by ASD is unique, and no two can be treated in the same manner.
TLI is dedicated to making ASD information and resources easily accessible, personalized and ready-to-use for patients, families and physicians.
What is Autism Spectrum Disorder (ASD)?
Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain from a genetic disorder or other causes not yet known. People with ASD might behave, communicate, interact, and learn in ways that are different from most other people, however there is often nothing about how they look that sets them apart from other people, making the disorder extremely difficult to diagnose.
Autism affects all ethnic and socioeconomic groups, and minority groups are often diagnosed at a later age. Boys are four times more likely to be diagnosed with autism than girls, and data shows the average age of diagnosis is 4-5 years of age, although autism can be reliably diagnosed as early as 18-24 months of age.
The Challenge of Diagnosing ASD
In 2023, the CDC reported that approximately 1 in 36 children in the U.S. is diagnosed with an autism spectrum disorder (ASD), according to 2020 data, despite there being no medical detection for an ASD diagnosis. Additionally, there is no standardized definition of the different types of autism and with closely related symptoms, the diagnostic process becomes even more difficult.
The ASD diagnosis entails specialty doctors like a neurodevelopmental pediatrician or a pediatric neurologist who examine a child’s behavior and development. However, these doctors often have long waiting lists—sometimes up to six months.
Our Role Within the ASD Community
The Thought Leadership & Innovation Foundation (TLI) knows firsthand that access to high-quality information enables parents to become better support for their children, advocate for the services they need, and improve their quality of life.
We are partnering with pediatricians and other medical specialists to develop a research gateway which integrates a new knowledge base of over 30,000 peer-reviewed research articles with new communication tools, links to valuable resources within the ASD community, and potentially integration of some tools already used in the community to encourage collaboration and education to solve some of the community’s challenges.
Over 50 abstracts are released weekly on new autism related treatments and therapies. That is a lot of new science being published! Newly released articles and studies will be peer-reviewed for validity before they are included in the gateway. Further, the research articles will be categorized by symptoms (i.e., seizures, gastrointestinal, immune, etc.), fully searchable and downloadable.
This new information service will provide several benefits to pediatricians and other medical specialists, and eventually parents when it is fully built:
· Streamlined Access: The knowledge base of research will become the new home of the collection of peer reviewed research in autism that has been curated by TLI Fellow Dr. Dan Rossignol over many years. Since 2006, Dr. Rossignol has published 53 papers, abstracts, editorials, and book chapters concerning autism and related conditions. The gateway will aggregate the research and provide improved navigation to provide the easiest access to the information needed to care for those with ASD.
· Improved Quality of Care: By increasing access to relevant research, pediatricians and other medical specialists can have information at their fingertips to better understand signs of autism and refer individuals to the specialist best suited to support their needs.
· Peer Community: In a large and geographically dispersed community, communication can be a challenge. The research gateway will have a modern and robust communication tool that will be used for connecting the clinical community and facilitating online forum discussions.
The Features of Our Services
TLI is looking to work alongside medical professionals to deliver personalized information for those affected by ASD. Serving as a center for research to best support individuals affected by autism, TLI offers a consolidated library of peer-reviewed autism research that includes information and links to resources for pediatricians and other medical specialists, instant, Google-like search of the reference library, monthly updates with new published science and more.
Backed by a team of established healthcare professionals and dedicated research assistants, TLI looks to progress the information surrounding ASD to share this knowledge with others.
Interested in Making a Difference?
We are committed to fully developing the potential of this important program and we are actively recruiting a select group of pediatricians and other medical specialists to become Thought Leaders for our Autism Research Gateway program. If you are interested in becoming a part of this dynamic group of innovators, please contact us for more information.