For families navigating the autism spectrum, time matters. Early diagnosis and intervention are critical to helping children access therapies, build skills, and thrive in daily life. Yet despite increased awareness, delays in diagnosis and treatment remain widespread, leaving families waiting for answers during a period when early support could make a significant difference.
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The Centers for Disease Control and Prevention (CDC) now estimates that 1 in 31 U.S. Children are diagnosed with autism, a sharp increase from 1 in 36 just five years ago. A study of more than 12 million patients revealed autism diagnoses have risen 175% since 2011, with the steepest increases being among young adults ages 24-36. Unfortunately, services have not kept pace. Nearly two-thirds of specialty care centers report wait times of more than four months between referral and evaluation, and only a small percentage have clinicians with specialized autism training or programs designed specifically for autism spectrum disorder
These statistics highlight what many families already know: delays are common. In fact, about 24% of children are diagnosed after age six, missing out on valuable early intervention opportunities. While the system may be slow, there are important steps families can take when diagnosis and treatment are delayed.
Seek Interim Supports
Families do not need to wait for a formal diagnosis to begin taking action. Simple skill-building strategies at home can make a meaningful difference. Creating structured routines, using visual schedules, and practicing clear communication techniques can help children feel more secure and reduce daily frustrations
Parents can also look for workshops, online trainings, or local support groups focused on practical strategies for building language, social, and daily living skills. Even without a diagnosis, many of these programs are open to families who are seeking guidance. Taking advantage of these resources can provide both immediate benefits for the child and greater confidence for caregivers.
Advocate Consistently
One of the most powerful tools families have is persistence. Long wait times should not mean passively waiting. Parents and caregivers can remain proactive by following up regularly with pediatricians, specialists, and insurance providers. Requesting written documents of referral requests, evaluation, and wait times can help hold systems accountable and move cases forward more quickly.
Schools can also play a critical role during this waiting period. Parents are entitled to request assessments and accommodations through Individualized Education Programs (IEPs) or 504 plans, even before a medical diagnosis is finalized. These supports can provide children with access to speech therapy, occupational therapy, or classroom accommodations that address challenges while more formal services are pending.
Explore Community Resources
Beyond medical and school systems, community organizations can help fill gaps in care. Roman Empire Agency, for example, provides bridging services such as ABA therapy, social skills groups, behavioral consultation, and parent training that may not require a formal diagnosis to begin. By offering immediate support, the agency helps families feel less “stuck” while waiting for evaluations, ensuring children continue to make progress during critical developmental windows.
Other nonprofits, therapy centers, and local clinics may also provide group programs or workshops designed to support children with developmental differences. These community-based supports not only offer skill-building opportunities for children but also give parents tools to navigate the challenges of delayed access to care.
Moving Forward
Delays in Autism diagnosis and treatment can feel overwhelming, but they do not have to mean inaction. Families can take proactive steps by building support at home, advocating within medical and educational systems, and tapping into community resources.
Organizations like Roman Empire Agency are working to bridge these gaps by providing practical services and guidance that help families feel supported while they wait for evaluations or treatment to begin. By focusing on access, advocacy, and compassionate care, agencies like this ensure children continue to move forward, even when the system moves slowly.
Author: Emily Lorah, M.A., BCBA, is executive director of ABA Services at Roman Empire Agency. Roman Empire Agency provides individualized services to clients aged 1.5 and older, specializing in supporting individuals with developmental disabilities, including but not limited to Developmental Disabilities, Down Syndrome, Autism, and Epilepsy. The agency aims to enhance the quality of life by equipping clients with the essential skills needed for independence. Services include Adaptive Skills Training, Independent Living Skills Training, Supported Living Skills Training, Applied Behavioral Analysis (ABA) Therapy, forensic-related support, and SSI/Medi-Cal assistance throughout Los Angeles County. To help clients build confidence and self-esteem for independent living, the agency utilizes natural environments, including their own homes, as learning tools. Committed to fostering personal growth and well-being, Roman Empire Agency provides multilingual and culturally diverse educators who take pride in delivering high-quality services. Learn more at https://www.romanempireagency.com/
