The Deficit Model
THE DEFICIT MODEL
"In dealing with autism, I'm certainly not saying we should lose sight of the need to work on deficits, But the focus on deficits is so intense and so automatic that people lose sight of the strengths."[1]
Before I had an autistic son, my understanding of autism had come from my academic and clinical training. If you asked me what autism was, I probably would have told you something like this: Autism is a neurodevelopmental disorder, likely caused by a combination of genetic and environmental factors, that leads to challenges with social skills, repetitive behaviors, speech and nonverbal communication. This deficit-based understanding of autism was first introduced to me as a medical student and reinforced when my son was diagnosed.
Many research articles and medical books introduce autism spectrum disorders as “devastating neurodevelopmental disorders”[2] and yet when I was discuss the topic with my highly successful husband, he insisted that “if there was a drug that caused autism it would be considered a performance-enhancing drug”. There can be truth in both, but considering one without the other is drastically incomplete. The lens through which we make our observations can have a large impact on the truths we conjure. Often our simple error is that we as healthcare providers may forget we are using a lens in the first place.
The deficit model of thinking is not specific to autism - it reflects a core feature of western medicine teaching. Physicians are trained to compare patient data (symptoms, lab data, images, etc.) against established standards for physiological and psychological health and any deviation from these norms can be interpreted as a potential indicator of disease or disorders. Categorizing differences and deficits into specific disease entities is key in being able to research and understand the basis of disease and establish effective, evidence-based treatments to “fix” the underlying problem or at least ameliorate suffering. This, I was taught, is the foundation of medicine and was core of my medical education.
As an ER doctor, I am a master at the ‘find the deficit and fix it’ mindset of medicine. It is crucial to my ability to rapidly and systematically evaluate patients, identify critical issues, and prioritize treatments. Thinking about medicine in this way makes me good at what I do. A skilled ER doctor is always on the lookout for specific symptoms, abnormal vital signs, or laboratory results that deviate from the norm - those are the patients that most urgently need our attention so that we can use our proven treatments and interventions to re-establish normal. If you come to the ER with vomiting from suspected food poisoning, your elevated heart rate might trigger me to worry about something more concerning, like dehydration or electrolyte abnormalities. Abnormal tenderness on your abdominal exam might make me consider a gallstone rather than food poisoning as the cause of your vomiting. And, if your blood pressure starts to drop below normal, I am suddenly worried about sepsis and treatment becomes more urgent. We are trained to fix abnormal data points so that we can restore normal function. I am a firm believer in this deficit-based approach – it guides my practice, it alleviates suffering, and it saves lives.
The current medical approach to diagnosing and treating autism has applied the same basic premise of identifying deficits and fixing them to the autism spectrum. When a parent brings their child in for an autism evaluation, the clinician uses a series of interviews, structured observations, and standardized diagnostic tools to gather data points related to areas of social interaction, communication patterns, and the presence of restricted or repetitive behaviors. Those data points are then compared against an age-adjusted “normal’. If there is sufficient deviance from ‘normal,’ an ASD diagnosis is obtained, and a severity scale (Level 1, 2, or 3) is applied based on the level of support the child needs. This approach is standardized, reproducible and currently our best diagnostic tool for evaluating patients with suspect autism spectrum disorders. Diagnosing kids early through this method is key in that it enables early intervention that can dramatically change the course of a child’s life and minimize the co-morbidities. The measuring of deficits and tracking of deviance from a “normal” has been key in establishing and proving the benefit of these therapies.
This deficit-based approach has led to evidence-based therapy and early intervention that has been shown to prevent missed developmental milestones. However, when you live with and love autistic humans, you realize that current diagnostic criteria for autism only captures the tiniest piece of the autistic experience and completely fails to describe the essence of what it means to be autistic. In fact, you start to realize that defining an autistic person only by their ‘deficits’ is as incomplete as defining a neurotypical person only by their deficits.
Autism also challenges our traditional classification and understanding of disorders, where similarities and common patterns guide diagnosis and comprehension. Autism, in many ways, is a disorder of difference rather than similarities – almost an exaggeration of normal human strengths, weaknesses, tolerances, and intolerances. Research in this area is complicated by similar studies that draw seemingly contradictory conclusions. Some studies show strengths in the same area that others show weaknesses. Others show no difference at all.
Our tendency to cling to a deficit-based view of autism may stem from the fact that these common deficits represent the only definable similarity among autistic individuals. As if we have sifted through and hand selected the few traits that are shared amongst the autistic community even if these deficits only represent a very small fraction of the autistic experience.
In recent years, the neurodiverse community has become increasingly vocal about their rejection of the so-called deficit framework of ASD. They argue that by focusing almost entirely on the deficits, we pathologize neurological differences and overlook the unique strengths and abilities associated with neurodivergent conditions. Even more concerning is the valid concern that defining autism through a deficit lens causes harm to the autistic community by perpetuating negative stereotypes and stigmas and negatively impacting the self-esteem and identity of neurodivergent individuals by framing their natural way of being as inherently flawed.
The neurodiverse movement advocates for rethinking normalcy, viewing autism as a variation of human thinking rather than a disorder that needs to be fixed. It’s not to say that the deficits described in the DSM aren’t inaccurate or incorrect - many autistic individuals do face those challenges, and those criteria and questionnaires are essential for early diagnosing and initiating early intervention, which we have seen has tremendous benefit - but rather a deficit framework of autism is drastically incomplete.
After my son received his formal autism diagnosis and I had finished my tearful read of the list of deficits and challenges he would face in his life, I longed to understand autism both from the perspective of a concerned mom and a curious physician-scientist. By now, I had read numerous books and was very familiar with the diagnostic criteria but there were a few things that just didn't make sense.
How was it that “autism”, supposedly one diagnosis, could present in so many unique ways? How could a single diagnosis present as a range of developmental delays to savant skills, even in the same person? What did my husband (a successful entrepreneur and CEO), have in common with my son (a brilliant, sensitive ten-year-old who has suffered from violent meltdowns) and all the incredibly diverse autistic patients I had cared for over the years have in common? The more I learned about autism, the more my physician brain sought a common thread. What does it mean to be autistic?
Scientific research in this area is advancing rapidly. Autism is accepted as a complex neurodevelopmental condition arising from a combination of genetic and environmental factors that influence early brain development, typically characterized by differences in social communication, sensory processing, and patterns of behavior or interests, which vary widely in presentation and severity among individuals. We have so far found hundreds if not thousands of genes that are associated with autism yet have failed to prove that having those genes causes autism. A myriad of environmental triggers and hypotheses have been floated, many of which have been shown to increase the likelihood of being diagnosed with ASD[3]. But, as of 2025, the biological basis of autism remains a bit of an enigma, and the complexity of the presentations make it difficult to fully understand.
The transition from DSM-4 to DSM-5 criteria for autism occurred in 2013, marked a significant shift in the diagnostic criteria for autism spectrum disorders. One of the most impactful changes was the consolidation of previously separate diagnoses (Autistic Disorder, Asperger's Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified) into a single diagnosis of Autism Spectrum Disorder (ASD). Also, differences in sensory processing were explicitly included as a criterion for the first time, reflecting advocacy from the autistic community, which long emphasized the importance of sensory experiences in autism.
The autistic community continues to advocate for a strengths-based approach and recognition of autism as a difference that may include disability, rather than solely defining autistic experience as a deficit. Their work has challenged the merits of the deficit framework, particularly in areas such as the theory of mind—the ability to understand others’ mental states—and empathy in autism. Many autistic individuals report experiencing intense empathy, albeit expressed in ways that may not align with neurotypical expectations. [A1]
Double empathy theory recognizes that communication difficulties between autistic and non-autistic individuals are reciprocal[4] and based on differences in how we experience and understand the world. This difference in experience and understanding is only disabling for autistic people because the “societal context prioritizes the non-autistic perspective”.[5] Similarly, challenges in social cognition traditionally linked to Theory of Mind are being reframed. Rather than deficits, these may represent diverse cognitive styles and alternative ways of processing social information.
When I attended the World Autism Conference, I put my MD credentials on my name badge, hoping that would help me identify and connect with my physician peers because I thought they would be the ones to help me on my quest to understand autism. But, to my surprise, the Western medical community was largely absent from the conference. I sheepishly asked an acupuncturist who I met why no other Western medicine providers were there, and she answered, well, they don’t usually come to these kinds of conferences. An occupational therapist I sat with at lunch repeated the same: most of her colleagues also adhered to the other version of autism and attended the ‘other’ conferences. This was an autism conference created for and by the autistic community, and their view of autism was a staunch contrast to what I, as a physician, was trained to understand.
I took a seat in the back row and listened.
The people in that room, while honest about the challenges of navigating a world not designed for them, didn’t see or define autism as a pervasive developmental disorder, a disorder of social communication and interaction, or a disorder of sticky thoughts and restrictive behavior – in fact, they didn't see autism as much of a medical diagnosis at all. They saw it as a way of being human.
[1] Grandin and Panek, The Autistic Brain.
[2] Sanders et al., “A Review of Neuropsychological and Neuroimaging Research in Autistic Spectrum Disorders,” 1.
[3] Authors note: While environmental factors have been shown to contribute to the development of autism spectrum disorder, there is no single environmental factor that is both known to cause autism or known to be required for the development of ASD.
[4] Milton, “On the Ontological Status of Autism.”
[5] Bottema-Beutel et al., “Avoiding Ableist Language.”
[A1]Very significant.