Many behavior analysts are encountering a novel practical challenge in their work: more children and adults receive an autism diagnosis, yet their needs vary more widely than ever. A recent episode of The Daily, “The Autism Diagnosis Problem,” explores why diagnoses are increasing and what that means for service systems.
Although the episode is designed for a general audience, it highlights several issues that are directly relevant to behavior-analytic practice.
The Diagnosis All Under One Tent
The podcast traces the evolution of autism within the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-5-TR, 2022) from the perspective of Catherine Lord, PhD, a renowned clinical psychologist who helped developed the criteria for an autism diagnosis. She identified the following milestones:
- 1990: Autism recognized by the DSM-III as a distinct neurodevelopmental disorder defined criteria required for the diagnosis. However, the heterogeneity of presentations became quickly apparent: Criteria were not consistently present for those who presented for autism assessment and were considered for diagnosis. For example, not every individual who presented with social deficiencies also had communication impairments. Cognitive impairments were sometimes present, but not always.
- 1994: The DSM-IV broadened its criteria for the autism diagnosis by allowing for “types.” Subsequent research on the reliability of these criteria found that clinical diagnoses frequently differed across sites and clinicians, even with standardized diagnostic tools (Lord et al., 2012). For example, some individuals received autism diagnoses at one location, while others with very similar presentations received Asperger’s diagnoses at another site. At the same time, individuals with Asperger’s form a sociopolitical movement to abolish the Asperger’s diagnosis, arguing for the acknowledgment of neurodiversity.
- 2013: DSM-5 places what used to be called “Asperger’s” and “autism” under one big tent – autism spectrum disorder. The new spectrum disorder allows diagnosticians to specify identifiers to denote severity level. These severity levels are underutilized (i.e., less than half of the children between 4 and 8 years old who had received an autism diagnosis also had a severity specifier; Russell et al., 2026).
Dr. Lord and many other specialists suggest that the rising autism prevalence is largely due to the broadening of diagnostic criteria, not a sudden increase in underlying incidence. It was actually Dr. Lord who pioneered the development the tools for diagnosis, such as the Autism Diagnosis Observation Schedule (ADOS). And yet she is now one of the leading voices in the “over-application” of the ASD diagnosis.
In practical terms, this means that the population of individuals receiving an autism diagnosis is more heterogeneous than ever. For behavior analysts who provide autism supports, this diagnostic overshadowing is not surprising, but it is consequential.
As the category expands, diagnoses are even less informative for treatment planning. Note that direct links from diagnostic assessment to treatment are rare (this is one of the major criticisms of the DSM diagnostic system): Two clients with the same diagnosis may require entirely different intervention approaches. Consequently, individually tailored assessments leading to functionally defined behaviors/points of intervention, not diagnostic labels, must guide the support offered. Behavior analysts collaborate with individuals, families, and systems during individualized assessment, to find out what supports are needed and acceptable for each unique client in their specific situation or setting.
Issue 1: Diagnosis as a Gatekeeper to Services
Dependence on diagnosis creates a systemic problem: Many behavior analytic settings require an autism diagnosis as an entry point for individualized assessment services. And it is not behavior analysts self-inflicting this requirement – rather is it those far removed from the direct services, such as insurance agencies, and state and federal programs. This creates a powerful contingency in which diagnosis functions as a gateway to support (e.g., number of therapy hours, availability or type of school supports, insurance coverage or other reimbursement).
The perquisite of a diagnosis has two downstream effects: an increased motivation among families to seek diagnosis and pressure on clinicians to interpret criteria more liberally. This creates tensions for both families and service providers. How do we advocate for clients with significant need who do not meet criteria for a diagnosis? How do we ensure appropriate intensity of services when diagnostic categories are broad? What does the training of behavior analysts have to look like to accommodate such heterogeneity in presentations?
Issue 2: Capacity Building
Two developments occurred: As autism spectrum disorder became a broadened diagnostic category, awareness of the diagnosis also expanded via media coverage and social media. Thus, health service equity and access have improved for individuals who traditionally were underserved (e.g., girls and women, members of minoritized populations). The incidence of autism has increased from 1/500 to 1/31 individuals in a little over 20 years (Shaw et al., 2025). As more individuals qualify for services under an expanded diagnostic category, systems must build capacity to offer supports across a larger and more diverse population with highly heterogeneous needs.
Yet, this is easier said than done. It begs the question of whether it is truly realistic to expect capacity to expand. There are unfortunately numerous examples where we haven’t built adequate systems to support need – obesity, mental health, homelessness, veteran care. And is the case with all these, the subgroups with more substantial needs are left further outside the system.
Both providers and funders alike are at risk of focusing their resources on specific constellations within the spectrum diagnosis (e.g., considering all individuals adequately served with early interventions). Contingencies upon the business of healthcare – from risk management to personnel shortages – may be barriers to building capacity and neglect older children and adults (and their families) who need intensive supports.
For example, a recent survey by the National Council for Severe Autism reported that 79% of respondents had been told their child was “too severe” to receive services.
Dr. Lord then raised an important concern: Do individuals with more intensive needs receive adequate support in today’s diagnostic and services environments? To represent this group of individuals, families and providers have coined the term “profound” autism, denoting moderate to severe comorbid cognitive impairment, little or no communication, and the need for 24-hour supervision (Watchel et al., 2024). These are the individuals meeting the DSM-5 severity level 3, requiring very substantial support.
At the same time, shifts in research and service priorities have increasingly emphasized community integration, employment, and emotional stability—important areas but not matching the needs of individuals with comorbid cognitive impairment and/or communication disorders who require intensive, ongoing support. As a result, individuals with intensive support needs (or “profound” autism) appeared in up to 95% of research in the 1990s and roughly 35% of research on autism today (Stedman et al., 2019).
For practitioners, these issues are not abstract. They are reflected in limited service availability, long waitlists for more intensive supports, and caps in provider training for high-support populations.
Issue 3: The Autism Identity
The podcast also highlights a broader cultural shift: Today, autism is understood not only as a clinical diagnosis, but also as a sociopolitical identity among individuals with fewer support needs. This cultural shift has meaningful benefits, including increased acceptance and reduced stigma related to the diagnosis (see recent blog on dismantling ableism). However, it also introduces complexity for service systems.
Diagnosis now serves at least two distinct and overlapping functions: a source of belonging and community building to promote meaningful social change, and a mechanism for accessing services and supports. These functions may align – but not always.
The podcast gives an example of a young woman with autism who is a strong advocate for individuals to live independently and not in residential settings or group homes. She tries to protect individuals with autism from the institutional practices of the past. Yet, families of individuals with intensive support needs also do not want to return to the past: They need resources to be allocated to creating novel and innovative residential living environments that promote individualized wellbeing while offering the supports needed.
What’s a Behavior Analyst to Do? Moving Toward a Practice-Oriented Reframing
Dr. Lord asks: Who gets to speak for the entire diverse community of individuals diagnosed with autism? What projects will receive funding? Who gets the resources for building capacity? Where does research focus?
And while the discussion focused on who qualifies for diagnosis and where the boundaries should be – behavior analysts can contribute a critical perspective by shifting the conversation from: “Does this person meet diagnostic criteria?” to “What scaffolding or support does the person (and their family) want and need? What does the child or their family have to learn? What teaching practices should we use in specific situations?”
This shift—from category to function—is at the core of behavior-analytic practice and is essential in a landscape where diagnostic labels are not predictive of the level of support wanted or needed, and often confusing. For ABA practitioners, the takeaway is not to debate where the autism boundary should be drawn. Instead, it is to recognize that:
- The diagnostic category will evolve
- Service systems will continue to rely on it
But effective practice cannot depend on it. Rather, a behavior-analytic approach emphasizes individualized assessment, data-based decision making, function-based intervention, and ongoing measurement of outcomes. A previous blog series reviewed the shortcoming of focusing on diagnosis (Part 1) as well as alternatives to the DSM that could refocus on matching assessment with treatment resources (Part 2).
Final Takeaway for Practitioners
“The Autism Diagnosis Problem” highlights a growing mismatch between broad diagnostic categories and individualized service needs.
For behavior analysts, this is a call to:
- Anchor clinical decisions in data, not labels
- Advocate for needs-based service models
- Communicate clearly with families, funders, and interdisciplinary teams
- Maintain a functional, individualized approach—regardless of diagnosis
As the field continues to grow within complex service systems, the role of the behavior analyst is not just to deliver intervention, but to help shape how need, eligibility, and effectiveness are understood.
References
Barbaro, M. (Host). (2025, November 24). The autism diagnosis problem [Audio podcast episode]. In The Daily. The New York Times. https://www.nytimes.com/podcasts/the-daily
Lord, C., Petkova, E., Hus, V., Gan, W., Lu, F., Martin, D. M., Ousley, O., Guy, L., Bernier, R., Gerdts, J., Algermissen, M., Whitaker, A., Sutcliffe, J. S., Warren, Z., Klin, A., Saulnier, C., Hanson, E., Hundley, R., Piggot, J., Fombonne, E., … Risi, S. (2012). A multisite study of the clinical diagnosis of different autism spectrum disorders. Archives of General Psychiatry, 69(3), 306–313. https://doi.org/10.1001/archgenpsychiatry.2011.148
National Council for Severe Autism. (n.d.). National survey on severe autism: Survey results. https://www.ncsautism.org/survey-results
Russell, L. A., Tinker, S. C., Shaw, K. A., Maenner, M. J., Dirienzo, M., Kirby, A. V., Howerton, E. M., Vanegas, S. B., & Lopez, M. (2026). Prevalence of autism spectrum disorder severity levels from the fifth edition of the Diagnostic and Statistical Manual (DSM-5) in the autism and developmental disabilities monitoring network. Journal of Autism and Developmental Disorders, 10.1007/s10803-026-07292-6. Advance online publication. https://doi.org/10.1007/s10803-026-07292-6
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
Stedman, A., Taylor, B., Erard, M., Peura, C., & Siegel, M. (2019). Are children severely affected by autism spectrum disorder underrepresented in treatment studies? An analysis of the literature. Journal of Autism and Developmental Disorders, 49(4), 1378–1390. https://doi.org/10.1007/s10803-018-3844-y
Wachtel, L. E., Escher, J., Halladay, A., Lutz, A., Satriale, G. M., Westover, A., & Lopez-Arvizu, C. (2024). Profound autism: An imperative diagnosis. Pediatric clinics of North America, 71(2), 301–313. https://doi.org/10.1016/j.pcl.2023.12.005