HCM 340 Module 3 Final Project Milestone One example

Milestone One: The Wait Between a Positive Autism Screen and a Diagnosis for Young Children

[Student Name]

Southern New Hampshire University

HCM 340: Healthcare Delivery Systems

Module Three Final Project Milestone One

[Instructor Name]

[Date]

The organization, setting and figures below are a composite written as a model document. No real employer, client, colleague or patient is described.

Milestone One: The Wait Between a Positive Autism Screen and a Diagnosis for Young Children

The Gap

The American Academy of Pediatrics recommends that every child be screened for autism spectrum disorder at 18 and 24 months, because autism can be diagnosed that early and because early intervention improves outcomes (Hyman et al., 2020). Screening is the part of the system that works reasonably well: it happens in primary care, at well-child visits most children already attend. The gap is what happens next. A child who screens positive must be referred for a diagnostic evaluation, and in most regions that evaluation is performed by a small number of specialists, typically developmental-behavioral pediatricians, child neurologists, child psychiatrists or psychologists, working in hospital-based centers. Families then wait.

The result is a delay that is large and measurable. Across the national surveillance network, the median age at which children received their earliest known autism diagnosis in 2022 was 47 months, and it ranged from 36 months at one site to 69.5 months at another (Shaw et al., 2025). A review of diagnostic models described a typical difference of about two years between the earliest signs of autism and the average age of diagnosis, caused largely by long waiting lists and lengthy evaluations (Gordon-Lipkin et al., 2016). A child flagged at 18 months and diagnosed at 47 months has spent more than a year and a half of the most responsive period of brain development waiting for a label that unlocks services.

Why the Gap Exists

The gap is a product of how the delivery system is organized, not of any single clinic's performance. First, diagnosis has been concentrated in specialty care. Developmental-behavioral pediatricians are few, and most practice in academic centers in large cities, so demand from an entire region funnels to one or two clinics. Second, the traditional evaluation is long and multidisciplinary, often requiring several appointments with different professionals, which limits how many children each clinic can see. Third, primary care clinicians, who see children most often, have generally not been trained or paid to make the diagnosis themselves, and a study of diagnoses from 2004 to 2019 found that the share made in primary care declined each year, even though children diagnosed by primary care clinicians were diagnosed about a year earlier (Smith et al., 2024). Fourth, the diagnosis is a gateway. Insurance coverage for behavioral therapy, eligibility for special education services and access to many state programs depend on a formal diagnosis, so the wait for evaluation delays everything that follows.

These causes interact. Rising recognition of autism has increased demand, prevalence among 8-year-olds reached 1 in 31 in 2022 (Shaw et al., 2025), while the specialist workforce has not grown to match it. The bottleneck therefore gets worse each year unless the system changes where and how diagnosis happens.

How the Gap Looks in One Region

The national figures become concrete in a single region. Consider a composite Midwestern state in which one children's hospital houses the only developmental-behavioral pediatrics clinic accepting new patients under age four. The clinic receives about 1,400 referrals a year for suspected autism and completes about 700 full evaluations, so the waiting list grows by several hundred children annually even before new staff leave or retire. Families referred today are offered a first appointment roughly 13 months out. Children in the state's rural north travel up to three hours each way, and families whose first language is Spanish wait longer still because the clinic has one bilingual psychologist. Meanwhile, the state's early intervention program can serve children under three without a diagnosis, but many private insurers and some school programs require one before approving intensive therapy, so many families who reach the top of the list have already aged out of the youngest and most responsive window. The composite is illustrative, but each element in it, a single regional clinic, a year-long wait, long travel and too few bilingual clinicians, appears repeatedly in the published descriptions of this bottleneck.

The Population Affected

The primary population is children between about 18 and 48 months of age who have screened positive for autism or whose parents or clinicians have raised developmental concerns, and their families. Within that group, the burden is uneven.

Families covered by Medicaid often face the longest waits, because fewer specialists accept Medicaid and because clinics with limited capacity may prioritize by referral source. Rural families face distance: an evaluation at a regional center may mean a full day of travel and missed work, repeated across several appointments. The surveillance data also show wide variation by place, with the median age of diagnosis differing by nearly three years between sites (Shaw et al., 2025), which suggests that where a child lives shapes how quickly the system responds. Children from families whose primary language is not English face added barriers in screening, scheduling and evaluation, and differences in intellectual disability rates by race and ethnicity among diagnosed children raise concern that some groups are identified later and with more severe needs.

The effects reach beyond the child. Parents wait months knowing something is wrong without a name for it or access to services, and many report stress and uncertainty during this period. Siblings, grandparents and child care providers are affected as families adjust without guidance. Health systems are affected too: children who are diagnosed later may need more intensive services, and early intervention programs lose time with children who could benefit most.

Why This Gap Matters for the Final Project

This topic meets the test of a delivery system gap. The needed service, a timely diagnostic evaluation, is well defined; the gap between need and delivery is measurable; the causes lie in how care is organized; and the population affected is identifiable. Evidence also shows that early, intensive intervention improves outcomes for toddlers diagnosed with autism, with one randomized trial finding gains in IQ, adaptive behavior and diagnosis after two years of treatment (Dawson et al., 2010), which means that each month of delay has a cost. Milestone Two will identify and analyze an existing initiative designed to shorten the wait, and the final paper will assess whether initiatives of that kind could close the gap at scale.

References

Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A., & Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125(1), e17-e23. https://doi.org/10.1542/peds.2009-0958

Gordon-Lipkin, E., Foster, J., & Peacock, G. (2016). Whittling down the wait time: Exploring models to minimize the delay from initial concern to diagnosis and treatment of autism spectrum disorder. Pediatric Clinics of North America, 63(5), 851-859. https://doi.org/10.1016/j.pcl.2016.06.007

Hyman, S. L., Levy, S. E., Myers, S. M., & Council on Children With Disabilities, Section on Developmental and Behavioral Pediatrics. (2020). Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1), e20193447. https://doi.org/10.1542/peds.2019-3447

Shaw, K. A., Williams, S., Patrick, M. E., Valencia-Prado, M., Durkin, M. S., Howerton, E. M., Ladd-Acosta, C. M., Pas, E. T., Bakian, A. V., Bartholomew, P., Nieves-Muñoz, N., Sidwell, K., Alford, A., Bilder, D. A., DiRienzo, M., Fitzgerald, R. T., Furnier, S. M., Hudson, A. E., Pokoski, O. M., . . . Maenner, M. J. (2025). Prevalence and early identification of autism spectrum disorder among children aged 4 and 8 years: Autism and Developmental Disabilities Monitoring Network, 16 sites, United States, 2022. MMWR Surveillance Summaries, 74(2), 1-22. https://doi.org/10.15585/mmwr.ss7402a1

Smith, J. V., Menezes, M., Brunt, S., Pappagianopoulos, J., Sadikova, E., & Mazurek, M. O. (2024). Understanding autism diagnosis in primary care: Rates of diagnosis from 2004 to 2019 and child age at diagnosis. Autism, 28(10), 2637-2646. https://doi.org/10.1177/13623613241236112