More than the Disorder: The Neurodiversity Lens of Autism
One autistic person's take on what it means to experience "autism"
The autism community is greatly divided due to the medical model vs social model of disability and how that applies to autism. In this article, I will summarize the current discourse as I understand it, and then explain my personal take, as an individual with autism. I do not believe I speak for the autistic community, but I want to add my story and perspective to the conversation.
Autism: The Disorder
Autism Spectrum Disorder was historically diagnosed as a form of childhood schizophrenia. The initial usage of the word meant a condition nearly opposite to the modern use of the word. In the 1950s, autism meant hallucinations and vivid fantasy, yet by 1970, the same word was being used to describe a lack of inner world. The medical world defines autism by the way it appears to psychologists, psychiatrists, and psychoanalysts. As our understanding of the human brain changes, so then does our understanding of autism. Or, in other words, the medical model doesn’t know what it’s talking about. Good scientists will admit that we don’t have enough understanding of the human mind to properly define “autism.”
Yet, the phenomenon we are trying to describe, the experience of an autistic individual, does not change. What we now define as autism has always existed, even if the way we talk about it has changed.
So what are we describing? What is autism? According to the DSM-V, the ultimate source for the medical model in America (and most westernized countries, I believe? Or maybe just English speaking?), a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions
Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication
Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behavior. For either criterion, severity is described in 3 levels:[A]
Level 3 – requires very substantial support
Level 2 – Requires substantial support
Level 1 – requires support
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behavior. For either criterion, severity is described in 3 levels:[A]
Level 3 – requires very substantial support
Level 2 – Requires substantial support
Level 1 – requires support
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
The medical model focuses on the ways autism impairs a person’s daily life. In the medical model, the emphasis is on the disorder. The medical model focuses on the deficits the autistic person may experience, and thus finds solutions to address those deficits.
Under the medical model, the focus will always be on curing autism, because the medical model only sees the impairments and deficits associated with ASD. Autism is only bad and so of course, the focus is on a cure.
So if someone excels in therapy and learns to cope with all of their symptoms to the point that there is no longer “clinically significant impairment” to their daily life, did they “cure” their autism?
The Neurodiversity Approach
The Neurodiversity model of autism says that autism is not a disorder of the mind, but rather a flavor of personality, so to speak. This theory says that someone is born autistic—that it’s society’s treatment of these individuals that creates the disabling symptoms. In fact, most autistic “symptoms” identified in the DSM-V are just human distress symptoms: self soothing behaviors and reactive outbursts.
Human personality is very poorly understood in the scientific sphere. At the tip of this iceberg, we have the five factor model of human personality. I have enjoyed considering autism through the lens of various human personality models, though, and could write an entire article on autism through the lens of Karl Jung and the MBTI assessment. But for the sake of this article, lets use the simpler FFM lens.
The five factor model of personality says that humans have five global traits that make up their personality.
openness (O) measures openness to new ideas.
conscientiousness (C) measures self-awareness and attention to detail.
extraversion (E) measures social energy.
agreeableness (A) measures a desire to “keep the peace” and cooperate with others.
neuroticism (N) measures sensory sensitivity—it’s often shown in negative traits or poor stress tolerance, but it ultimately stems from a nervous system that has a propensity for quick arousal and slow return to baseline.
Low scores on O, C, E, and A, but high neuroticism sounds a lot like autism.
Personality traits are innate, and it is much easier to adjust your life to your personality than trying to change who you are all the time. By looking at autism as an extreme personality profile, rather than a disorder, we leave room for healthy Autistics. People who are raised by understanding parents, who are taught tools by elder Autistics who have walked the path of life and learned breadcrumbs of wisdom to pass on. People who live in a society that accepts diversity in human personality, including all the quirks of autism.
I am here for the radical idea that the world doesn’t need to be hostile to autistics. Autism doesn’t need to be disabling. Instead, we can use it to spur social change and drive our society towards more kindness, more equality, and more acceptance.
Practical Applications
Why does any of this matter? We’re all trying to help people with autism thrive, right?
The goal may be the same, but how we get there is what truly divides the community. The traditional approach is Applied Behavior Analysis, or ABA, therapy. Let’s talk about what that means. ABA therapy uses positive reinforcement to reinforce desired behaviors. Essentially, you are training the autistic individual to perform neurotypical behaviors. It’s a trick. You’re teaching them to suppress their autism and act “normal” for the sake of putting everyone around them at ease. We won’t even talk about the fact that you’re training your child like a dog.
ABA does not consider the autistic individual’s perspective, because the medical model is only focused on minimizing symptoms of the disorder. I believe that most parents’ desire is for their child to be healthy and happy. Acting normal at the expense of their mental health and happiness is not in line with normal parental desires.
The neurodiversity model says, “you are not broken, you are different. Here are some tools that help others like you when they struggle.” Autistic accommodations are merely socially abnormal. Neurotypicals receive accommodations all the time without anyone noticing.
The schooling system is set up to accommodate the common needs of children: quiet time for testing, loud communal rooms for eating. Gym class and recess are at assigned times to allow for energy release, but students are expected to be able to contain their energy and sit still at their desks, so as not to distract other students. Never mind that this distracts the neurodiverse student who needs to move more than their neurotypical classmates.
The M-F, 9-5 workday is set based on neurotypical working preferences. Many neurodivergents work in a flow state for long periods of time, but then need a long time for recovery, too. Personally, I flourished on a job that I worked my 40-hour shift in one stint, then had 5 days off before my next shift.
The world is set to a neurotypical’s default settings. My sensory sensitivity means I’m often dealing with sensory overload because of something that is set to the neurotypical standard. For example, at night, when the street lamps come on, I need sun glasses to tolerate the blinding lights.
Just because a therapy is coded as ABA, does not mean it is truly an ABA approach therapy. Often, that’s the only type of therapy covered by insurance. Instead, pay attention to your therapists’ motives. Are they trying to make your life easier with your “difficult child,” or are they trying to ease the difficulties in your child’s life? Autistic children deserve to be raised without the complex trauma that currently enmeshes almost every autistic experience. It is beyond time to turn the focus from curing autism to understanding autism, because there is nothing to cure.
For further reading, I suggest Devon Price’s Unmasking Autism: Discovering the New Faces of Neurodiversity.