Jodie Singer’s early childhood was marked by significant communication challenges. While she could echo phrases or recite entire books like “Madeline,” simple yes or no questions from her mother remained unanswered. Her struggles also included self-harm, such as compulsively tearing at her skin and hair, and inconsolable tantrums.
Diagnosed with autism just before her third birthday, Jodie, now 28, continues to require intensive, 24/7 care. She communicates primarily through short, repetitive phrases and needs daily assistance with essential tasks like eating, dressing, and personal hygiene.
Jodie’s diagnosis came at a pivotal moment when the understanding of autism was rapidly evolving. Over the past quarter-century, the definition expanded from encompassing primarily severely disabled individuals to a broad spectrum that includes a wide range of abilities. This expansion has even led to autism being recognized as an integral part of the identity of many successful individuals, including prominent figures like Elon Musk and Bill Gates.
Many autism experts attribute the sharp increase in autism diagnoses to this broadened definition and increased public awareness. This rise has been controversially termed an “epidemic” by Health Secretary Robert F. Kennedy Jr., who links it to debunked theories about causes like vaccines and Tylenol, which are widely rejected by the scientific community.
This diagnostic expansion has fueled an intense, ongoing debate about how autism should be categorized. It has created deep divisions among parents and advocates, sparking heated discussions online, especially with Mr. Kennedy’s intense focus on the issue.
Earlier this year, Mr. Kennedy made a controversial statement about autistic children, claiming they “will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date.”
[Image: Jodie Singer, with her mother Alison and others, in a room at the Center for Discovery, her residential facility in Monticello, N.Y.]
These remarks ignited a strong negative reaction from many autistic adults, who condemned them as inaccurate and dehumanizing. However, Jodie’s mother, Alison Singer, while disagreeing with Mr. Kennedy on the root causes of autism, found his frank portrayal of the challenges faced by those with severe autism resonated deeply with her own family’s reality.
Ms. Singer, who leads the Autism Science Foundation, a research-funding nonprofit, is now a prominent voice among parents and clinicians advocating for a fundamental reclassification of autism. They argue that the current broad “spectrum” diagnosis overshadows the profound struggles of individuals with severe disabilities, like Jodie, for whom the diagnosis was originally intended.
At leading autism conferences and in scientific publications, this group has put forth a proposal for a new, distinct category: “profound autism,” designated for individuals with the most significant disabilities. Current estimates indicate that approximately one in 31 8-year-olds in the U.S. receive an autism diagnosis, a substantial increase from one in 150 in 2000. While severe cases contribute minimally to this rise, the majority of this surge is attributed to a greater number of higher-functioning individuals now being diagnosed.
[Chart: Prevalence of children with autism. Data indicates that from 2000 to 2016, both profound and non-profound autism diagnoses increased among 8-year-olds in the U.S., with non-profound autism showing a greater surge. Source: Centers for Disease Control and Prevention.]
For parents of children with severe autism, this expanded diagnostic umbrella has led to significant drawbacks. They report a consistent decrease in research focused on individuals with the most profound impairments, despite a substantial increase in overall autism research funding. A recent survey by the National Council on Severe Autism involving 800 families revealed that 80% were told their children were too disruptive even for specialized autism support programs.
Jill Escher, who founded the national council and has two adult children with profound autism, stated, “Autism has become so diluted, we can’t really tell what we’re talking about anymore.” Alison Singer echoed this sentiment, adding, “The idea that Elon Musk has the same diagnosis as my daughter is ludicrous.”
However, many autistic advocates fiercely oppose any proposal to divide the diagnosis. They express concerns that such a split could diminish or invalidate the experiences of those on the milder end of the spectrum. These activists, key figures in the neurodiversity movement, highlight psychiatry’s historical tendency to overlook the needs of individuals who were considered merely eccentric or challenging. They fear that a new division could once again marginalize those with less apparent, but equally valid, struggles.
“The underlying message is that we’re not ‘really’ autistic,” remarked Dr. Mary Doherty, an anesthesiologist and founder of Autistic Doctors International. She noted that among the many autistic individuals she knows, none support this proposed diagnostic split.
A Once “Very Rare” Disorder
[Image: Alison Singer assists her daughter Jodie with packing for the weekend.]
Autism’s formal recognition arrived with the 1980 edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), often called psychiatry’s “bible.” Initially, the diagnosis targeted toddlers who exhibited profound social detachment, severe language impairments, or complete mutism. These children often had IQs below 70 and engaged in self-destructive actions like head-banging or aggressive behavior. At the time, the manual described it as a “very rare” disorder.
For Alison Singer, the first signs of Jodie’s unique development appeared during a 1999 “Mommy and Me” class. Unlike other babies, Jodie meticulously arranged her toys by color and size rather than engaging in typical play. Her most striking challenge was her inability to use language to communicate effectively.
In the early days of the internet, parent email groups buzzed with alarming theories about autism’s origins. Andrew Wakefield’s now-discredited 1998 study linking autism to the MMR vaccine fueled fears. Simultaneously, the book “Let Me Hear Your Voice,” penned by an autistic child’s mother, promoted the unproven idea that intensive behavioral therapy could lead to a cure.
Responding to these hopes, Ms. Singer left her job and enrolled Jodie in 40 hours of therapy per week. However, after two years, while Jodie acquired some fundamental skills, her core autistic traits remained unchanged. “I realized this was going to be lifelong,” Ms. Singer reflected. The family resolved to focus on helping Jodie achieve her fullest potential.
Embracing a Unified “Spectrum”
[Image: Portrait of Ari Ne’eman, an autistic self-advocate and disability rights researcher.]
Dr. Ne’eman, diagnosed with Asperger’s in childhood, established the influential Autistic Self Advocacy Network in 2006. This organization championed interventions aimed at genuinely improving autistic people’s lives, rather than attempting to force them into typical behaviors. The neurodiversity movement, through its efforts to destigmatize autism, offered many adults a valuable framework for understanding their lifelong challenges. Online communities and sectors like science and technology saw “Aspie” culture flourish, even celebrating autistic traits as a unique form of “superpower.” Notably, Microsoft launched a neurodiversity hiring initiative.
However, in 2012, a study by clinical psychologist Catherine Lord at UCLA concluded that Asperger’s was an unreliable diagnosis, with diagnostic outcomes often depending more on the clinician than on consistent criteria. Compounding this, historical scrutiny revealed Hans Asperger’s problematic association with the Nazi regime.
Consequently, in 2013, psychiatrists consolidated these separate categories into the singular “autism spectrum disorder,” a classification still used today. This new system delineates impairment levels, from Level 1 (requiring minimal support) to Level 3 (requiring very substantial support).
This decision sparked immediate controversy. Dr. Simon Baron-Cohen, a clinical psychologist at the University of Cambridge, called it a “mistake.” In an essay written during the DSM revision, he contended, “I am the first to agree with the concept of an autistic spectrum, but there may be important differences between subgroups the psychiatric association should not blur too hastily.”
The Alarming Rise in Diagnoses
[Image: President Donald J. Trump and Health Secretary Robert F. Kennedy Jr. addressing reporters about autism at the White House.]
When autism first appeared in diagnostic manuals 45 years ago, it was considered exceptionally rare, affecting just two to four children per 10,000. Over time, these figures steadily climbed: to one in 500, then one in 150, and currently, an astonishing one in 31.
Both President Trump and Mr. Kennedy frequently invoke these statistics to suggest an alarming, rapid spread of autism. During a recent news conference, Mr. Trump declared, “The meteoric rise in autism is among the most alarming public health developments in history,” linking it to widely discredited claims about Tylenol and vaccines.
However, the scientific consensus points to a different primary driver for this increased prevalence: the evolving definition of autism itself. Dr. Eric Fombonne, a psychiatrist and epidemiologist involved in adding the Asperger’s diagnosis to the DSM, stated, “Everything changed when we included Asperger’s.” He highlighted that early autism studies showed 75% of individuals with the diagnosis also had intellectual disabilities; today, that figure is only about one-third.
Given the attention from Mr. Trump and Mr. Kennedy, some experts warn that the expanded diagnosis now carries significant public health implications. Dr. Allen Frances, who headed the 1994 DSM revision, admitted that the dramatic increase in autism diagnoses was unforeseen. “The dire consequences now include that people won’t get vaccinated because of this diagnosis,” he cautioned, lamenting that they “didn’t foresee it.”
Addressing a Profound Gap in Services
[Image: Eileen Lamb, with her sons Jude and Charlie, in their backyard.]
Parents of children with profound autism report that the increasing number of diagnoses has coincided with a growing difficulty in accessing appropriate services for their children. Alison Singer shared that Jodie was asked to leave three different schools before her district finally funded her placement in a specialized residential school in upstate New York, dedicated to children with profound autism.
Eileen Lamb, a mother of two autistic children, has personally witnessed this disparity. Her 12-year-old son, Charlie, who is non-verbal and has an intellectual disability, faces far greater challenges in securing accommodations than his 10-year-old brother, Jude, who, despite some social and communication issues, is considered gifted.
Last summer, both boys enrolled in a swimming class for children with disabilities in Austin, Texas. While Jude flourished, Charlie’s participation required an additional instructor, a cost Ms. Lamb and her husband couldn’t bear, forcing them to withdraw him. She also had to remove Charlie from his special education classroom due to incidents involving aggression, ingesting unsafe objects, and elopement.
“I see how broad the spectrum is every day,” said Ms. Lamb, who is also autistic. She notes that her online platform, The Autism Cafe, where she chronicles her experiences as a parent of a child with profound autism, often draws criticism from those who accuse her of stigmatizing the condition.
Jackie Kancir, executive director of the National Council on Severe Autism and full-time caregiver for her 22-year-old profoundly autistic daughter, highlighted the stark reality in her home state of Tennessee: programs exist for adults with mild to moderate disabilities, but “there is absolutely nothing available for her population.” Ms. Kancir contends that the neurodiversity movement has inadvertently “usurped this population to the point of exclusion,” leaving those with severe needs underserved.
Divergent Needs, Disparate Research
[Image: A son sitting on a couch looking at his mother, who is sitting next to him. The mother is holding a digital tablet.]
A critical, ongoing question revolves around whether profound autism represents a distinct biological classification. Unfortunately, research into this area is hampered by the severe underrepresentation of individuals with significant impairments in studies. Dr. Matthew Siegel, a child psychiatrist at Boston Children’s Hospital, highlighted that from 1991 to 2013, the inclusion of severely autistic participants in treatment studies plummeted from 95% to a mere 35%.
Dr. Siegel attributes part of this decline to practical challenges: individuals with profound autism often cannot complete online surveys, or tolerate the confinement and noise of an MRI machine for brain scans. Furthermore, obtaining informed consent for research involving those with intellectual disabilities, typically provided by their parents, adds another layer of complexity.
However, Alison Singer suggests that the rising influence of the neurodiversity movement has also redirected research focus. Priorities have shifted away from exploring causes and potential cures for severe autism towards areas such as mental health support, best employment practices, and resources for autistic women during pregnancy.
The research questions vital to parents of profoundly autistic children are vastly different. Ms. Singer articulated these concerns: “What is causing my child to bang her head against the floor? Why is she having seizures? Why doesn’t she eat? Why doesn’t she sleep? How can I teach her to talk?”
At various international autism conferences, proposals have been introduced for a specific “profound autism” category. This proposed definition includes individuals with minimal to no speech, an IQ below 50 (or both), and a requirement for 24-hour caregiver access.
Dr. Ne’eman, the Harvard disability researcher, acknowledges the urgent need for enhanced services and research for profoundly impaired individuals. However, he expresses apprehension that a new diagnostic label could further stigmatize them and increase their vulnerability, given psychiatry’s controversial history of institutionalizing individuals with severe disabilities. He also questions the practicality of drawing such a line, comparing the attempt to split the autism spectrum to trying to “cleave a meatloaf at the joints.”
A Glimpse into a Regular Day
[Image: Jodie Singer, flanked by resident aides, emerging from a therapy animal barn at the Center for Discovery.]
Like many parents of profoundly autistic children, Alison Singer harbors deep concerns about Jodie’s future after she and her husband are no longer able to care for her. Jodie resides at a residential center spread across 1,500 acres in upstate New York, home to 180 adults. Given that most residents stay for life, openings are exceptionally scarce.
During a summer visit with Ms. Singer, Jodie was engaged in her daily routine: feeding hay to the farm animals, often pausing to pet and kiss the goats.
However, my arrival and her mother’s Friday visit (instead of the usual Saturday for a weekend home trip) disrupted Jodie’s routine, causing visible distress. Ms. Singer patiently reassured her that it would be a “regular day” before they went home. Jodie responded by pacing and compulsively pulling at her hair, a behavior reminiscent of her childhood, while repeatedly murmuring “regular day.”
An hour later, back at her shared house on the expansive campus, the upset had subsided. As Ms. Singer packed her bag, Jodie sat by a sunlit window, quietly drawing a picture of her family. A gentle smile touched her face as she deliberately spelled out her own name: “Jodie.”
[Image: A sketchbook displaying a pink drawing of three stick figures, with the name “Jodie” carefully written above them.]