Reva Mathieu, EdD, BCBA
Duquesne University
The New York Times article, “Should the Autism Spectrum Be Split Apart?” (Ghorayshi, 2025), presents a complex and deeply personal examination of the ongoing debate surrounding the definition and diagnosis of autism. The article also expands upon whether the diagnostic category of autism spectrum disorder (ASD) should be divided into separate classifications that better reflect the more polar ends of the spectrum. The article is framed around a variety of stories from individuals who experience autism either themselves or through supporting family members.
Through their stories, the article illustrates how the current wide spectrum of autism is defined. The definition now includes individuals with significant intellectual, behavioral, and communication impairments on one end of the spectrum, while including those with less intensive and pervasive support needs on the other end. The article provides an opportunity to view the various tensions between caregivers of profoundly affected children and adults and self-advocates within the neurodiversity movement who argue that autism is something to be celebrated as a variation, not a disability. Ultimately, the article raises a critical question: Has the expansion of the autism spectrum diagnosis inadvertently obscured the unique needs of those requiring the most substantial support? This review will explore several key themes emerging from this discussion and invite readers to consider the diverse perspectives and lived experiences of those impacted.
Diagnostic Expansion and Its Consequences
Historically, autism has been defined in a variety of ways, and at many points, it was more narrowly characterized by profound language and social deficits as well as severe behavioral challenges. It wasn’t until the 1980’s that autism was considered its own diagnostic category. Over successive revisions of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the criteria broadened to encompass a wider range of presentations, including individuals once identified as meeting the criteria for Asperger’s syndrome in 2013. This expansion contributed to the now-familiar prevalence rates of approximately 1 in 31 children, which included a dramatic increase from the earlier estimate of 1 in 150 (CDC, 2024). Even more striking, in the 1970’s and 1980’s, studies were identifying prevalence rates for autism to be around 2 or 4 cases per 10,000 children (Boat & Wy, 2015).
Connected to these changes in diagnostic criteria, the article also highlights a concern voiced by some parents and clinicians that the increase in diagnostic inclusivity has inadvertently diverted research and service-related resources away from individuals with the most significant needs (Barall, 2026). To support this assertion, research by Stedman and colleagues (2019) documented a significant decline in the inclusion of profoundly autistic participants in treatment studies. Specifically, this shift represents not only a research gap but also, and potentially more importantly, an access gap to essential services that may be required by the group of the individuals with higher-level needs. Many advocates for the differentiation in diagnostics note the potential positive impacts of including distinct diagnostic categories. For example, the addition of a profound autism category may increase the likelihood that these higher-needs populations remain visible and attended to within research and policy frameworks while also strengthening access to specialized clinical, residential, and community-based services that are adequately funded and tailored to the intensity of their support needs.
Neurodiversity, Representation, and Ethics
The article also thoughtfully juxtaposes the perspectives of parents advocating for a split diagnosis with those of autistic adults and self-advocates who see the proposal as potentially ableist and marginalizing. Leaders in the neurodiversity movement emphasize the progress that has been achieved through recognition of autism as a natural variation in human neurology rather than a disorder to be “fixed” (Garcia, 2021).
From a scientific and treatment perspective, both views raise valid ethical and practical considerations. While the neurodiversity movement rightly challenges stigmatizing and limiting narratives, the call for distinct recognition of profound autism underscores an equally pressing reality that individuals with significant support needs require intensive, evidence-based interventions that may differ fundamentally from supports for those with less intensive needs. This distinction does not diminish the value of neurodiversity; rather, it reinforces the necessity of precision in diagnosis and subsequent service allocation based on individualized and specific needs.
The debate also reflects ethical tensions around representation and voice. While self-advocates with the ability to communicate their wishes and needs push for autonomy and inclusion, parents of profoundly autistic individuals often find themselves advocating on behalf of children who cannot self-advocate due to intellectual or communication challenges. This responsibility is also increasingly assumed by siblings, who may step into advocacy roles as their parents age or pass away.
Both groups share a legitimate need for recognition. Policy and practice frameworks must reflect a nuanced understanding that supports autonomy and self-determination (Celiberti, 2025). These frameworks should coexist with high-intensity behavioral, medical, and educational interventions for those requiring substantial and lifelong assistance. The creation of a category like “profound autism” may help clarify service pathways and research priorities, provided it is guided by rigorous scientific standards and avoids stigmatization or exclusion.
Research Priorities and Evidence-Based Practice
A recurring issue in the article is the imbalance in research priorities. As attention and funding have expanded toward quality-of-life measures, workplace inclusion, and mental health (often focused on vocal autistic adults), the needs of those with profound autism (e.g., basic communication, safety, and adaptive living skills) have received comparatively much less attention (Frampton, 2025; Trapp, 2026).
This imbalance is problematic. Evidence-based interventions, particularly those grounded in applied behavior analysis (ABA), remain the most effective and empirically validated means for teaching functional communication, self-care, behavior reduction, and daily living skills to individuals with autism (Gitimoghaddam et al., 2022; Schreibman et al., 2015). Efforts to redefine or split the diagnosis should not obscure the critical need for scientifically supported treatment—regardless of classification. Rather than a categorical divide, the field would benefit from increased investment in research that spans the full continuum of autism, ensuring equitable attention to those with profound disabilities.
Conclusion
This article offers an essential and emotionally resonant contribution to the ongoing dialogue about what autism means and how best to support individuals across the spectrum, as well as the families who care for and support them. It reminds professionals that while autism encompasses immense diversity, our collective efforts must be guided by scientific precision, ethical responsibility, and deep compassion in research, policy, practice, and access to supports. This debate also underscores the enduring relevance of ASAT’s mission, which is to promote access to evidence-based, individualized interventions for all individuals with autism, but particularly those whose voices and needs risk being overshadowed in broader societal conversations (Celiberti, 2026).
Both perspectives within this debate reflect a shared struggle for access, though the nature of that access may differ. For individuals with profound needs, it may involve intensive behavioral and medical supports, safety-related interventions, and respite services for families who often experience all-encompassing and unrelenting caregiving demands. For individuals with less intensive needs, it may mean the right to be seen, respected, and accommodated as people who experience and process the world differently, with supports that foster autonomy, dignity, and quality of life.
Despite these differences, both groups are united by a common desire for understanding, compassion, meaningful inclusion, and the right to the best quality of life the world has to offer. As professionals, advocates, and community members, we must work to recognize that no two lived experiences of autism are the same. By remaining open to perspectives that differ from our own and those close to us, we create opportunities for empathy, collaboration, and partnership. It is through this kind of perspective-taking that we can begin to realize that, even when our paths diverge, we can still walk beside one another, committed to building a world that honors every individual’s humanity and potential.
References
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Barall, R. J. (2026). Science Corner: Who is missing from autism research – and why it matters. Science in Autism Treatment, 23(1).
Boat, T. F., & Wu, J. T. (Eds.). (2015). Prevalence of Autism Spectrum Disorder. In Mental Disorders and Disabilities Among Low-Income Children. National Academies Press (US). National Academies Press. https://www.ncbi.nlm.nih.gov/books/NBK332896/
Celiberti, D. (2025). What autism awareness should be about. Science in Autism Treatment, 22(4).
Celiberti, D. (2026). Three mothers share their journeys navigating profound autism; Part 1 of a two-part interview with Lorri Unumb, Judith Ursitti, and Eileen Lamb. Science in Autism Treatment, 23(1).
Centers for Disease Control and Prevention. (2024). Autism and developmental disabilities monitoring network surveillance year 2022. U.S. Department of Health and Human Services. https://www.cdc.gov/autism/addm-network/index.html
Eckes, T., Buhlmann, U., Holling, H.-D., & Möllmann, A. (2023). Comprehensive aba-based interventions in the treatment of children with autism spectrum disorder – A meta-analysis. BMC Psychiatry, 23, Article 133. https://doi.org/10.1186/s12888-022-04412-1
Frampton, S. (2025). Science Corner: An overview of external validity. Science in Autism Treatment, 22(7).
Garcia, E. (2021). We’re not broken: Changing the autism conversation. Houghton Mifflin Harcourt.
Gitimoghaddam, M., Chichkine, N., McArthur, L., Sangha, S. S., & Symington, V. (2022). Applied behavior analysis in children and youth with autism spectrum disorders: A scoping review. Perspectives on behavior science, 45(3), 521–557. https://doi.org/10.1007/s40614-022-00338-x
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
Trapp, W. (2026). Science Corner: The importance of participant characteristics when determining the external validity of a research line. Science in Autism Treatment, 23(2).
Reference for this Article:
Mathieu, R. (2026). A review and discussion of The New York Times Article: Should the Autism Spectrum Be Spit Apart? Science in Autism Treatment, 23(3).
Related ASAT Interviews:
- Three mothers share their journeys navigating profound autism in Part 1 of a two-part interview
- Three mothers share their journeys navigating profound autism in Part 2 of a two-part interview
- Interview with Eileen Lamb, Mother and Advocate
- Lessons Learned, Lessons Shared: An interview with Dr. Sabrina Freeman, Parent, Author, and Advocate
- Interview with Beverley Sharpe, mother of Allison
- Interview With Preeti Chojar, MCA, ASAT Board Member and Mom to Ravi
- Interview with Robyn Schneider, author and mother of twins with autism
Related Perspectives Pieces:
- A mother’s perspective on her son’s place in the autism community
- Standing up for science on parent social media
- What autism awareness should be about
Related ASAT Articles:
- Science Corner: Who is missing from autism research and why it matters
- Clinical Corner: How can I best advocate for my child?
- Clinical Corner: What are some quality-of-life indicators for adults living with autism and intellectual disabilities?
- Clinical Corner: How can I better integrate compassionate care into ABA education and practice?
- Clinical Corner: How can I promote success for individuals with autism in the community?
- Clinical Corner: How can parents promote autonomy while supporting a healthy lifestyle in young adults with autism?
- Clinical Corner: What are some adaptive skills for a young adult to gain independence?
Related Media Watch Letters:
- Media Watch: ASAT responds to Examiner.com’s Reshaping public misconceptions of parenting a child with autism
- Media Watch: ASAT responds to Psychologytoday.com’s Making severe autism visible
- Media Watch: ASAT responds to FoxPhilly.com’s Parents of autistic children worry what life will bring when they’re adults
- Some Media Representations of Autism Across the Lifespan
