Bridging the gap in autism spectrum disorder care: Empowering physicians with up-to-date research and current solutions

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The growing incidence rate of autism spectrum disorder (ASD) has been well documented, particularly among children. With this increase, primary care physicians (PCPs), many of whom may not yet have treated a patient with ASD, must now prepare for an influx of adults with ASD transitioning from pediatric care into primary care practices. As these individuals age, the role of PCPs becomes increasingly important.

However, many PCPs are challenged to meet the nuanced needs of adults with ASD due to gaps in resources, knowledge and access to up-to-date research. It’s essential to recognize that while groundbreaking research on autism continues, there is an immediate opportunity to improve the care provided today.

People diagnosed with ASD often present with medical conditions that may not always appear straightforward but can be treated effectively. There is no need to wait for future innovations to begin enhancing the quality of care, as physicians can improve treatment today by incorporating already available resources into their approach.

The problem: Gaps in primary care for adults with ASD

Keri Schoenbrun
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PCPs often serve as the first point of contact for individuals with ASD, yet many physicians report feeling inadequately prepared to address the complexities of the disorder. Only 13% of surveyed providers feel they have the tools and resources necessary for effective ASD care, leaving the majority without the means or resources to deliver high-quality care.

This lack of preparedness is particularly concerning given the high prevalence of co-occurring conditions among adults with autism, such as epilepsy, gastrointestinal disorders and anxiety, which often go untreated or are mismanaged due to insufficient knowledge. The urgent need for better resources and more comprehensive training for physicians is underscored by the stark difference in life expectancy among individuals with ASD, averaging 54 years compared with 72 years for the general population.

Examples outside of medicine highlight the importance of structured transitions, which could serve as models for the needed improvements in health care transitions. Resources like the Transition Tool Kit help address various challenges that individuals with autism face as they move from adolescence to adulthood, offering guidance on areas such as education, employment and independent living. A similar example in education, “When the Bus Stops Coming,” provides practical insights for families navigating this critical period.

However, structured programs that specifically guide adults with autism through health care transitions, such as moving from pediatric care to adult primary care, remain limited. This gap often leaves individuals without sufficient medical support, exacerbating many addressable health issues into adulthood.

Balancing today’s care with tomorrow’s promise

Over the past several decades, substantial progress has been made in understanding and diagnosing ASD. Early intervention has been a major focus, with research demonstrating that early diagnosis and targeted therapies can significantly improve outcomes for children with ASD.

Diagnostic tools such as the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R) have become gold standards in identifying ASD. These tools have enabled earlier and more accurate diagnoses, allowing for timely interventions that can make a significant difference in a child’s development.

While research continues to explore promising therapies, such as neuromodulation and genetic studies aimed at uncovering the causes of autism, these advances are not yet available for the current adult population. The exciting developments offer hope for future generations, but meaningful improvements can begin now by applying existing knowledge and treatments

Immediate solutions: Addressing current care needs

PCPs increasingly recognize the importance of being well-versed in autism-specific health care needs, particularly as more practices express interest in treating adults with ASD. The good news is that a breakthrough isn’t necessary to start providing better care. Tens of thousands of peer-reviewed studies have already been published that address many of the co-occurring conditions that patients with autism experience, from sensory sensitivities to gastrointestinal issues.

In order for physicians to better incorporate existing knowledge into everyday practice to improve outcomes and quality of life for these, we must find ways to better connect this vast amount of data with the health care system’s current protocols.

For today’s patients, the focus must go beyond long-term research prospects to actionable, evidence-based solutions that can be implemented now. Not only can regular checkups and physicals be informed by up-to-date research, but PCPs can feel more confident referring patients to specialists who also have access to an existing body of research.

The role of knowledge sharing and centralized resources

While PCPs are often the first line of health care treatment, they frequently face challenges in keeping up with the latest advances in therapy and ASD research. To effectively bridge the gap between research and practice, a centralized and comprehensive source of up-to-date information on ASD is essential.

A centralized knowledge source allows physicians to access relevant studies and treatment options when they are considering patient cases, enabling better clinical decisions. Access to current findings on co-occurring conditions commonly associated with ASD would support more effective individualized treatment plans, improving patient outcomes.

Beyond enhancing treatment, a centralized platform would boost both patient and caregiver confidence in the health care provided. It would also serve as a valuable tool for ongoing professional development, giving PCPs access to the latest training materials and emerging research.

Moreover, a centralized resource would facilitate communication and collaboration among health care providers, fostering a more cohesive approach to ASD care. Such collaboration is especially beneficial for physicians with limited specialized training in ASD who are responsible for managing the overall health of these patients.

Finally, access to a broad knowledge base would allow physicians to tailor their care strategies to each patient’s specific needs. For adults with ASD, individualized care is particularly relevant, as their health challenges differ from those of younger individuals and often require a more nuanced approach.

Moving forward with current solutions in autism care

While autism research is being pursued on a grander scale, many tools to address the medical needs of adults with autism already exist today. There is no need to wait for a blockbuster treatment to provide respectful, effective medical care. Significant impact can be made simply by making it easier for physicians to leverage the tens of thousands of published studies and interventions that are available today.

The role of primary care in the lives of adults with ASD cannot be overstated, especially with a growing population that requires PCPs to be empowered with the latest knowledge and resources to provide effective care.

A centralized knowledge resource dedicated to ASD research and treatment can play a pivotal role in closing the gap between what is known and what is practiced in the care of adults with ASD. By focusing on the immediate needs of today’s adults with ASD and leveraging current research, we can bring about meaningful improvements in their quality of life.

Keri Schoenbrun is development director of TLI, the Thought Leadership & Innovation Foundation. She is a senior business leader with more than 20 years of experience at renowned enterprise organizations such as American Express, Accenture and Gartner/CEB, as well as boutique consultancies such as RAISE Communications and the Alexander Group, Inc.