It’s impossible to get an autism diagnosis without a gap between what is expected and a person’s ability to meet those expectations. But who gets to set the expectations? And when expectations are not met, whose responsibility is it to close the gap? The individual? Their family? A school? An employer? A nation? All of the above?
If you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid. ~ Unknown
Although Albert Einstein is often credited with this saying, this has been fairly well disputed.
The answer to the question about who needs to close the expectations gap depends on one’s perspective on disabilities, so first we need to dive into understanding the different models of disability.
Medical model versus social model of disability
In order for health insurance to cover medical or psychological services, an individual typically needs a diagnosis related to the intervention. Diagnoses are helpful because they help identify why someone is struggling and what might help them struggle less or even thrive.
The current standard reference for mental and behavioral conditions, including autism, is the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), which was released in 2013.
The focus of these diagnoses is on what the individual lacks or cannot do — in other words, what is “wrong” with them. Autism diagnostic criteria include “persistent deficits in social communication and social interaction across multiple contexts” and “impairment in social, occupational, or other important areas of current functioning.”
In short, the medical model of disability views autistic people as disabled by their impairments or differences. The impairments are seen as something that can hold a person back from participating fully in life and achieving success — that they are different in a way that is bad.
Disability in the medical model is a personal problem, that the disability is in the individual, and it’s the individual’s issue to solve. The focus is on curing the person or providing interventions, so they become less disabled and able to fit in and be accepted by society.
Enter the social model of disability
A critique of the medical model of disability, the social model of disability was born in the 1970s within the physical disability movement in the United Kingdom. It sought to redefine disability as the restrictions placed on an individual by society when it does not provide equitable social and structural support to make environments accessible to people with physical impairments.
Rather than focusing on what is wrong with the person, it seeks to highlight what they need. For example, a building is inaccessible to someone in a wheelchair if it only has stairs rather than ramps and elevators.
If we apply this thinking to autism, in the social model of disability, being autistic is neither good nor bad. It’s just part of who someone is, a different way of thinking and being. It’s a difference like blindness or deafness, hair color or race, that needs to be accepted and accommodated.
The big shift comes when one looks at the proposed solutions to problems that result from the autistic person trying to function in a society that does not understand their needs nor accommodate them. In the social model of disability, the onus is on society to remove barriers and make the environment accessible to everyone.
Attitudinal: for example, when someone sees only what the person can’t do rather than what they can, or has low expectations of people with autism.
Environmental: such as not having a quiet place to take tests or do focused work in the workplace when there are attention issues.
Communication: for example, an unwillingness to provide agendas in advance of meetings or written instructions if an autistic person has auditory processing challenges.
Institutional: such as denying reasonable accommodations to qualified job candidates or employees, or refusing to hire (or firing) people who disclose they are autistic.
Popular with many of the autism self-advocates, I think the social model of disability is an interesting ideal to aspire to, and fortunately, some important protections already exist in the disability laws of many countries, but waiting for the world to meet the wide variety of needs autistic adults have will be an extended exercise in patience. Who wants to wait that long?
Where I think the social model has a point, though, is that many autistic people are tired of having their differences pathologized. They are tired of being required to do all the adapting to neurotypical culture expectations and would prefer that others at least try to meet them part of the way.
They don’t want to be “cured” of autism. They want to be understood and supported so they can live their best lives.
The neurodiversity paradigm
Not without critics, the neurodiversity paradigm builds on the social model of disability but still makes allowances for the medical model.
The term neurodiversity was coined in 1998 by Judy Singer, an autistic sociologist, to describe the neurological diversity among human brains. The concept is related to the more familiar biodiversity, which we know contributes to stronger, healthier biological ecosystems, and in the same way, neurodiversity suggests that the diversity in the way people’s brains are wired is something to celebrate rather than cure.
The neurodiversity paradigm challenges the idea that people with neurological, cognitive, and developmental differences are fundamentally flawed, as well as the idea that those whose brains more closely match the norm, are automatically superior and set the standards that must be met.
It extends the social model of disability, which originally started with physical disabilities, to include cognitive differences like autism, ADHD, and the "dys-es" (dyslexia, dysgraphia, dyscalculia, dyspraxia) as well as mental health conditions like OCD and Tourette’s. It looks at how to make the world a friendlier place for people whose brains are wired differently so they can live happier, healthier, and more productive lives.
The notion of neurodiversity is very compatible with the civil rights plea for minorities to be accorded dignity and acceptance and not to be pathologized. And while the neurodiversity movement acknowledges that parents or autistic people may choose to try different interventions for specific symptoms that may be causing suffering, it challenges the default assumption that autism itself is a disease or disorder that needs to be eradicated, prevented, treated, or cured. ~Simon Baron-Cohen in Scientific American, April 30, 2019
To understand the concept of neurodiversity, it helps to recognize that the way people’s brains are wired directly determines how they think, perceive, and behave in the world. Those whose brains are wired most similarly are going to think, experience life sensorily, and behave similarly. These people would be considered “neurotypical” and be in the “neuromajority.”
People whose brains diverge from this standard in some way would be called “neurodivergent.” Depending on their individual brain wiring, they will think, experience life, and behave differently in some way(s) from the majority, making them the “neurominority.”
Because people in the neuromajority have the greatest say in how society, systems, and organizations are set up because there are just more of them to agree on how things should be, they tend to have relatively even strength and weakness profiles. Everything was designed to accommodate their needs. Here are some examples:
Communication styles: Many societal norms and systems are designed around neurotypical communication styles. For example, social interactions often rely heavily on nonverbal cues, such as eye contact and body language, which may be difficult for some autistic individuals. Neurotypical communication styles that prioritize verbal communication and quick responses may also be challenging for individuals who have speech or language difficulties or slower processing speeds. This can result in difficulties in social interactions, misunderstandings, and exclusion for neurodivergent individuals.
Sensory environments: Many public spaces and environments are designed with sensory assumptions that cater to the needs of neurotypical individuals. For example, bright lights, loud noises, strong smells, and crowded spaces can be overwhelming for neurodivergent individuals, including those with sensory sensitivities often associated with autism. These sensory environments can lead to sensory overload, stress, and anxiety, making it difficult for neurodivergent individuals to fully participate in various settings, such as schools, workplaces, and community spaces.
Education and employment systems: Traditional education and employment systems are often designed with neurotypical assumptions and may not fully accommodate the needs of neurodivergent individuals, including those with autism. For example, traditional classroom settings may rely heavily on auditory learning and social interactions, which can be challenging for individuals with sensory sensitivities or social difficulties. Employment systems may prioritize social skills, networking, and multitasking, which can be difficult for some neurodivergent individuals. This can result in barriers to accessing education and employment opportunities, and can limit the potential for neurodivergent individuals to thrive in these settings.
Social expectations and norms: Societal expectations and norms, such as social cues, unwritten rules, and social hierarchies, can be complex and challenging for neurodivergent individuals, including those with autism who may struggle with social interactions and social understanding. These expectations may be unspoken or implicit, making it difficult for neurodivergent individuals to navigate social situations and feel included in social settings. This can result in social isolation, misunderstandings, and exclusion for neurodivergent individuals.
Access to accommodations and support: Access to accommodations and support services, such as assistive technologies, therapies, and reasonable accommodations in education and employment, may be limited or not readily available for neurodivergent individuals, including those with autism. This can create barriers to accessing the support and resources needed to fully participate in various aspects of life, such as education, employment, and community engagement.
With all these challenges in environments and systems that were not designed with them in mind, neurodivergent people naturally end up with strength and weakness profiles that are much more dramatic than neurotypical people.
If someone is unable to speak, helping them to communicate verbally if possible is likely to improve their quality of life. If their food preferences are so restrictive it causes malnutrition, it would be abusive to deny them medical attention. If they yell and scream to get attention, it would be irresponsible to not teach them more adaptive ways to get their needs met.
But if all we do is focus on what someone can’t do, we lose out on the amazing strengths, skills, and talents they can bring to the table. In many cases, people with exceptional challenges also possess exceptional strengths, but if all we do is focus on what they can’t do, and they spend all their time trying to close the gap, they never have the opportunity to allow their strengths to shine.
All that potential is being lost during a time when the world is experiencing unprecedented complex challenges. It behooves us to figure out how to leverage different thinking styles, people who naturally think outside the box, to help us solve the massive challenges we face.
We can’t solve today’s problems with the same level of thinking we used to create them. ~Unknown
This is another quote often attributed to Albert Einstein, but this cannot be confirmed or disputed
Not only do we all experience a kinder, richer world, but we may also unlock the keys to solving many of the complex problems we face.
How does the neurodiversity paradigm change the conversation about autism?
If we challenge the traditional medical model of viewing neurodevelopmental conditions like autism as disorders to be treated or cured, and accept them instead as natural variations in neurological development, it can cause a sea change that benefits everyone.
We begin to recognize neurodivergent individuals as having diverse strengths, abilities, and perspectives, which is the first step to creating systems, organizations, and environments in which we can tap this currently lost potential.
This paradigm shifts the conversation about autism in several significant ways:
Moving from pathology to identity
The neurodiversity paradigm emphasizes that autism is not a disease or a deficit, but a natural variation of human neurology. It recognizes autism as an integral part of an individual's identity, rather than a disorder to be fixed or eliminated.
This shift in perspective encourages acceptance and celebration of neurodivergent individuals, fostering a sense of pride and belonging in the autistic community.
Focusing on strengths and abilities
The traditional medical model of autism often focuses on deficits and challenges associated with the condition. In contrast, the neurodiversity paradigm highlights the strengths and abilities of neurodivergent individuals.
It recognizes that autistic individuals have unique talents, skills, and perspectives that can contribute positively to society. This reframing of autism as a form of neurodiversity promotes a strengths-based approach that nurtures the inherent abilities of autistic individuals, which enables them to thrive.
Just like their challenges tend to be more dramatic than neurotypical people, their strengths can be equally dramatic, but unless they are enabled to bring those talents to the table, we all lose out on all this potential.
Rather than solely focusing on fixing what neurodivergent people can’t do, when their challenges are supported, everyone in society gets to benefit from what they can do. Everyone wins!
Advocating for inclusion and accommodation
The neurodiversity paradigm emphasizes the importance of creating inclusive and accommodating environments that embrace neurodiversity. It encourages societal changes to accommodate the needs and preferences of neurodivergent individuals, such as providing reasonable accommodations in education, employment, and social settings.
This shift promotes a more inclusive and equitable approach to supporting autistic individuals in all aspects of life so they can thrive.
Valuing diverse perspectives
The neurodiversity paradigm recognizes that neurodivergent individuals have unique perspectives and experiences that can contribute to diverse ways of thinking, problem-solving, and creativity. It challenges the notion of a "normal" or "typical" neurology and encourages a more inclusive and accepting view of cognitive diversity.
This promotes a broader understanding of human diversity and challenges societal norms around neurodevelopment and cognition.
Encouraging self-advocacy and empowerment
The neurodiversity paradigm promotes self-advocacy and empowerment among neurodivergent individuals. It encourages autistic individuals to speak up for their own needs, preferences, and rights, and to actively participate in decision-making processes that affect their lives.
This shift empowers neurodivergent individuals to be active agents in their own lives and promotes autonomy and self-determination.
The neurodiversity paradigm shifts the conversation around autism and other neurodivergent conditions from one of deficit and pathology to one of diversity and inclusion. It challenges the notion that there is a single "normal" way of being and thinking and instead embraces the idea that neurological differences are a natural part of human variation.
In this paradigm, the responsibility for closing the expectations gap is not solely on the individual or their family, but also on society as a whole. It calls for creating inclusive environments that accommodate the diverse needs of neurodivergent individuals, removing attitudinal, environmental, communication, and institutional barriers that limit their participation and inclusion in various aspects of life.
While the neurodiversity paradigm has its critics and may still face challenges in gaining widespread acceptance, it offers a promising and empowering framework for changing the conversation around autism and other neurodivergent conditions.
It encourages a shift in mindset from viewing autism as a problem to be solved or a deficit to be cured, to seeing it as a difference to be understood, accepted, and celebrated. It promotes the idea that neurodivergent individuals have the right to be recognized, respected, and supported in living their best lives, just like anyone else.
In conclusion, the neurodiversity paradigm challenges the traditional medical model of disability and offers a more inclusive and empowering perspective on autism and other neurodivergent conditions. By recognizing and valuing neurodiversity, we can change the conversation from one of deficit and pathology to one of acceptance, inclusion, and celebration of differences. It calls on society to create accessible and accommodating environments that enable neurodivergent individuals to thrive and contribute their unique strengths to the world. Embracing the neurodiversity paradigm can lead to a more inclusive and equitable society where all individuals, regardless of their neurological differences, are valued, accepted, and supported.