Research and Education Support Patients and Families to Overcome Challenges of Autism Spectrum Disorder Diagnoses 

Updated on November 17, 2023

Diagnosing Autism Spectrum Disorder (ASD) can be a complex and intricate process, presenting several challenges for individuals, their families and healthcare professionals. Currently, there is neither medical detection for ASD nor standardized definitions for the types and subtypes of autism. Early signs and symptoms often go unnoticed, delaying helpful and necessary interventions for young children. 

An autism diagnosis does offer a pivotal opportunity to assess and understand the unique needs and strengths of a child on the spectrum. This understanding, supported by the latest medical research and interventional approaches, helps tailor a practical course of action to support the individual as he or she grows and develops. While it is challenging there are ways that we can create a better, more supportive approach.  

The Thought Leadership and Innovation Foundation (TLI) is focused on support and education relating to ASD diagnoses by providing easily accessible, personalized and ready-to-use information. Our services support patients, families and physicians in this difficult journey.

What is ASD?

Autism spectrum disorder (ASD) is a complex neurodevelopmental condition characterized by a wide range of symptoms, skills and levels of impairment. It is typically diagnosed in early childhood and affects a person’s ability to communicate, interact with others and engage in repetitive behaviors or activities. ASD is often described as a “spectrum” because it encompasses a diverse range of symptoms and severity levels. Some individuals with ASD may have significant impairments in their communication and social skills, while others may have milder challenges and can function well in certain areas of life.

Common ASD features may include difficulties in social interactions, verbal and non-verbal communication challenges, repetitive behaviors or obsessive interests and sensory sensitivities. The exact cause of ASD is not fully understood, but it is believed to involve a combination of genetic and environmental factors. 

ASD diagnoses are complicated because every individual is unique, and ASD symptoms present differently from person to person. While ASD patients face a common cluster of neurotypical challenges, there is often nothing about how they look that sets them apart from other people, making the disorder extremely difficult to diagnose.

The Challenges Associated with an ASD Diagnosis

As a disorder, ASD diagnoses are increasing at an alarming rate. According to the Centers for Disease Control, approximately 1 in every 36 American schoolchildren received an ASD diagnosis based on 2020 data. Boys are four times more likely to be diagnosed with ASD than girls. Autism crosses all gender, socioeconomic and demographic barriers. Disadvantaged individuals are often diagnosed less frequently and at later ages, which can delay effective interventions.

Often, standard pediatric ASD assessments do not result in specialist referrals, which can delay critical early interventions. According to a study published in Pediatrics, only 39% of children who tested positive on the Modified Checklist for Autism in Toddlers with Follow-Up (M-CHAT/F) received referrals to specialists. This assessment is typically used for a standard autism screening between 18 and 24 months, the earliest ASD can be diagnosed. Unfortunately, most autism diagnoses are delayed, with the average age of diagnosis somewhere between four and five years of age.

Alleviating ASD Diagnosis Challenges

Early diagnosis and intervention provide the best opportunity to support ASD individuals in healthy development. One of the most important ways to provide this is through improved sharing of existing and ongoing autism research with individual medical professionals, their peer groups and even families. TLI supports this effort through a new information service for the ASD support community by advocating for improved access to high-quality information.  This type of resource serves as an important tool that enables parents to provide better support for their children, become stronger advocates for the services they need and improve their children’s quality of life.

Autism research is ongoing, with more than 50 abstracts typically released weekly on new autism-related treatments and therapies. More than 30,000 autism-related research papers have already been published. TLI is creating a curated, easy-to-navigate gateway for peer-reviewed research to aggregate this important information. 

This knowledge base will also fuel greater collaboration among medical professionals and autism’s medical support community regardless of geographic distance. It will act as a resource for medical professionals to deepen their understanding of ASD diagnostic indicators and intervention options. Many individuals with autism also present related conditions, from physical and psychological medical issues to neurological differences, which can help confirm suspected ASD diagnoses earlier and more accurately. 

An ASD diagnosis is never easy. It requires parents and caregivers to educate themselves on the disorder and how they can best work with medical professionals to assist their children. This gateway creates a collaborative resource for ASD teams to draw from in creating a plan.

Creating a Supportive Community

Supporting ASD individuals requires a cohesive community of medical professionals, family members/caregivers and specialists who can provide the necessary interventions to help children develop and grow throughout their lives. This community can also help build awareness among the public in assisting ASD individuals to thrive to the best of their abilities. 

A community approach also maintains the ability to share information as it becomes available. New research, treatments and approaches will undoubtedly continue to advance breakthroughs in early diagnosis, subtyping and personalized treatment of autism, creating a more unified and standardized approach, even when autism can present so uniquely from individual to individual.

To meet the unique needs of an autistic child, interventions are typically multifaceted and can play a crucial role in addressing the core challenges of autism, including communication difficulties, social interactions and sensory-based sensitivities. Using a comprehensive, community-based approach to treatment and support, we can better equip all individuals on the spectrum to navigate the world and reach their full potential.  

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Shawn Murphy

Shawn Murphy is Vice President of the Thought Leadership & Innovation Foundation (TLI). The Thought Leadership & Innovation Foundation (TLI) is a not-for-profit organization that works at the nexus of science, technology and public health, innovating for superior prevention, treatment and outcomes for those facing life-altering medical diagnoses.TLI helps patients across the country and around the world find better healthcare outcomes. Visit and follow us on LinkedIn.