Chapter 1. Neurodiversity: The New Diversity

Judy Singer, a self-advocate and sociologist, is credited as being the first person to have used the term neurodiversity in her 1998 honors thesis, titled “Odd People In: The Birth of Community Amongst People on the Autism Spectrum. A Personal Exploration of a New Social Movement Based on Neurological Diversity” (Singer 1998). She then contributed a chapter based on this work to the book Disability Discourse, a volume in a series focused on disability, human rights, and society (Singer 1999). The title of her chapter was “‘Why Can’t You Be Normal for Once in Your Life?’ From a ‘Problem With No Name’ to the Emergence of a New Category of Difference.” In her work, Singer described the need to change the autism spectrum condition from a medicalized disability to a new social movement. She discussed that the “rise of autistic advocacy” was similar to the movements based on disability or difference but was different from the LGBT movements in that the neurodiversity movement was greatly accelerated.

Singer explained that the rise of the neurodiversity movement might be related to the invention and rapid development of the computer and the internet. She called computers an autistic invention and an essential prosthetic device for autistic people. As Singer explained, without these technological advances and the affinities of autistic individuals with computers, this group would not have enough social, organizational, and networking skills to further the autistic movement.

Singer described three objectives of the neurodiversity movement. First, she advocated for recognition of the characteristics of autistic individuals by neurotypical individuals. She described how autistic individuals were sometimes misjudged as incompetent or lazy. Second, she promoted civil rights for autistic individuals. She explained that autistic individuals were often teased, bullied, and discriminated against at school and in the workplace. She pointed out that even autistic people who were highly skilled and intelligent were not given the same rights to earn a living as neurotypical people. Finally, Singer argued that autistic individuals should receive services appropriate to their level of functioning. She stated that the variety of services that were available to people on the autism spectrum were limited and that many of these individuals were not benefiting from the services available to them.

In addition to Singer’s work, Harvey Blume’s 1998 article in The Atlantic was often cited as one of the first articles to use the term neurodiversity. He wrote, “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment? Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind” (Blume 1998). The autism rights movement (ARM) in the 1980s and 1990s encouraged stakeholders to move away from the medical model of disability. The ARM was initiated by Jim Sinclair, who argued that autism is “a variation in functioning rather than a disorder to be cured” (Solomon 2008). Sinclair advocated for providing therapies that teach autistic individuals coping skills rather than treatments that are meant to “normalize” their behaviors. He also advocated for autistic people to be recognized as a minority group. A common criticism of this movement was that most ARM activists were “high-functioning” self-advocates and therefore did not represent autistic individuals at all levels of functioning. Another criticism was that ARM trivialized the disabilities of autistic individuals.

Singer’s (1999) contention was that human minds are naturally diverse, with between-person variations being part of the rich tapestry of human experience, intellect, and skill. Formed in the 1990s, the neurodiversity concept aligned with the social model of disability (Oliver 1983), which proposed that disability may be a socially constructed oppression, a feature of being different or unusual as opposed to ill or injured. Although neurodiversity is still often referenced solely in relation to autism (Kapp et al. 2013), it is increasingly used in psychology and education as an umbrella term associated with autism, dyslexia, dyspraxia (or developmental coordination disorder), ADHD, and dyscalculia (Armstrong 2010; Grant 2009; Weinberg and Doyle 2017). Even though the ontological status of included conditions is still predicated on a medical model of deficit via DSM, the public perception of neurodiversity has shifted paradigmatically in recent years. A proliferation of articles espousing the benefits of neurodiversity in the business press (Austin and Pisano 2017; Bernick 2019; Comaford 2017) is supported by an albeit much smaller yet consistent voice from academia (Meilleur et al. 2015; Riddick 2001; Taylor and Walter 2003; White and Shah 2006). As the “diamond in the rough” narrative gains traction, it is time for ontological reflection from psychiatry and psychology, in an effort to understand how our work may be enhancing and limiting inclusion outcomes for individuals with these variations. In this section, we outline the issues in language, ontology, and epistemology that influence research and sociolegal practice.

As is typical in emerging narratives, language is evolving rapidly, through common discourse between stakeholders. The neurodiversity paradigm has stimulated much discussion on social media and spawned a movement among activists, seeking the right of self-determination, to choose nomenclature that reflects their experience, which may or may not relate to ill health (Ortega 2009). With neurodiversity as the umbrella, individuals with qualifying diagnoses may prefer the terms neurodiverse, neurodivergent, neurodifferent, or neurominority; these terms are currently used interchangeably, and debates are ongoing within the movement regarding which terms are “correct.” Some disability campaigners have eschewed “person-first” descriptors such as “person with autism,” which sound as though the person has an illness, in favor of autistic or autist, dyslexic, or dyspraxic, which describe the person’s diagnosis as an identity (note there is no equivalent for ADHD). Conclusions are yet to be drawn, but clinicians should be aware of the deeply felt positions regarding language and the identity level to which it speaks. Diagnosis within this context may be interpreted as affliction, catharsis, or vindication; it may empower or produce self-limiting beliefs, depending on what the diagnosis has meant to the person and how the associated experiences have resulted (positive or negative) in the past.

Identity-first language was found to be preferred in one study involving 3,470 autistic individuals, parents, and their broader support network in the United Kingdom (Kenny et al. 2016). The term autistic was endorsed by 61% of autistic adults, 52% of family members/friends, and 51% of parents (51%) but only 38% of professionals. In contrast, person with autism was endorsed by 49% of professionals, 28% of autistic adults, and 22% of parents. In a more recent study involving 198 autistic adults in Australia, participants were asked to rank-order six choices (person with autism, person on the autism spectrum, autistic, autistic person, person with autism spectrum disorder, person with autism spectrum condition). The term autistic was found to be the most preferred and second-least offensive, whereas the term person on the autism spectrum was shown to be the least offensive and second-most preferred (Bury et al. 2020). In this book, we choose to use identity-first descriptors for consistency. However, it is important to note that some neurodiverse individuals do prefer person-first language, whereas others do not have a strong preference either way. Using identity-first or person-first language is meant to demonstrate respect toward neurodiverse people. Therefore, it is ultimately the neurodiverse individual’s personal choice to declare a preference.

The language debate highlights a key ontological tenet of the neurodiversity movement: the evolutionary critique. The traditional medical model (Shelley-Tremblay and Rosén 1996) proposes that the high prevalence of conditions, their heritability (D’Souza and Karmiloff-Smith 2017; Siegel 2006), and their persistent comorbidity (Hendren et al. 2018) are indicative of evolved, advantageous benefits that sufficiently outweigh deficits. For example, benefits include the capacity for detail and memory in autism (Meilleur et al. 2015), entrepreneurial flair in dyslexia (Logan 2009), and creativity in ADHD (White and Shah 2006). In this model, the notion of disability or deficit exists in relation to sociohistorical norms rather than neurophysiological deficit or damage. To illustrate, we consider the skills of literacy, numeracy, sitting still, single focus, eye contact, and small talk to be so essential within education and development that those who have difficulty with these skills must be “broken,” yet we do not acknowledge the situational essence of these skills. In terms of human biological adaptation to environment, such behaviors are modern in the context of the human species and may indeed prove to be temporary. On this basis, some campaigners have gone so far as to argue that research aimed at “cure” or “intervention” is threatening these individuals’ right to exist (Baker 2011; Krcek 2012). As the language and ontology shift from diagnosis toward identity, tools such as DSM, which may change criteria or remove conditions (e.g., Asperger’s disorder), appear to some within the neurodiverse community as being adversarial because they make a patriarchal assertion that defines the boundaries of acceptable human form.

Moving forward, there will be opportunities for the neurodiversity paradigm to influence and be influenced by a collaboration of academics, practitioners, and stakeholders. The social model of disability research suggests that there should be “nothing about us without us” (Charlton 1998), calling for greater involvement of service users within research design (e.g., involving actually autistic persons in autism-related research development). Practitioners have access to research participants. Academics seek ecological validity for their work. A grounded theory approach (Ralph et al. 2015) (whereby we critique the questions we are asking through various lenses) can support the rigor of the hierarchy of evidence (whereby we note the answers to our questions) within the epistemological stance of critical realism (Houston 2014; Pawson 2006). Using iterative inductive, hypothetico-deductive, and abductive reasoning (Van Maanen et al. 2007) within this “pragmatic paradigm” (Simpson 2018), we can build on our understanding of naturally occurring variations in cognition, neurobiology, and genetics and go further. The end goals for both individuals and society are inclusion, equality, and the fulfillment of human potential (Doyle 2018). To succeed, we must embrace the medical, evolutionary, social, and policy models at our disposal and work toward a more unifying theory of neurodiversity.

In the 1980s and 1990s, the neurodiversity movement was organized by high-functioning autistic individuals. The agenda was mainly set to benefit the people advocating for themselves. We use the term neurodiversity with a broader meaning: the diversity that views differences in brain function and behavior as normal variations in the human population. We consider neurodiverse conditions to include autism, dyslexia, ADHD, dyspraxia, dyscalculia, dysphonia, Tourette syndrome, synesthesia, and other behavioral and neurobiological differences. Each of these conditions has been defined historically within the medical model, which emphasizes the characterization of symptoms or deficits. We emphasize that these are neurodiverse conditions instead of disorders. Although we acknowledge the challenges of these conditions, we recognize that these characteristics can be both strengths and challenges depending on the context. Most importantly, we apply these concepts across the entire spectrum of neurodiverse conditions.

To articulate the essence of the new definition of neurodiversity, we designed the SBMN. The SBMN is a formulation of approaches to maximize the potential of neurodiverse people based on their strengths and interests. This model focuses on enhancing their abilities and engaging other stakeholders to help them achieve developmental tasks during their formative years. The four main components of the SBMN are Gardner’s theory of multiple intelligences (Gardner 1983; Gardner and Hatch 1989), positive psychology (Seligman and Csikszentmihalyi 2000), positive psychiatry (Jeste et al. 2015), and Chickering’s seven vectors of development (Chickering and Reisser 1993).

For many years, human abilities have been benchmarked by the IQ test. This test, however, has significant limitations. The IQ test assesses only a few areas of human abilities, such as visual-spatial abilities, language aptitude, and mathematical abilities. In contrast, Gardner’s theory of multiple intelligences allows for more comprehensive understanding of human abilities. First introduced in 1989, Howard Gardner and Thomas Hatch proposed that separate psychological processes are involved in dealing with linguistic, numerical, pictorial, gestural, and other kinds of symbolic systems (Gardner and Hatch 1989). They reviewed the literature in several areas:

Gardner’s original list of intelligences included musical-rhythmic, visual-spatial, verbal-linguistic, logical-mathematical, bodily kinesthetic, interpersonal, and intrapersonal (Gardner 1983). He later added naturalistic as an eighth intelligence. He has also written about existential intelligence. Table 1–1 provides more details about the core components of the multiple intelligences and their associated potential occupations.

The second component of the SBMN is positive psychology. Founded by Martin Seligman and Mihaly Csikszentmihalyi, positive psychology is designed to promote individual well-being, contentment, and satisfaction through hope, optimism, and full immersion of oneself in experiences (Seligman and Csikszentmihalyi 2000). Hart and Sasso (2011) reported that 53 definitions of positive psychology had been published since the late 1990s. The top three themes of positive psychology they derived from these definitions included the following (Hart and Sasso 2011, p. 84):

As we apply positive psychology to interactions with neurodiverse individuals, we focus on the strengths that enable them to progress toward meeting their personal goals. Positive psychology is designed to help individuals develop a healthy, strengths-oriented life by raising their awareness of personal strengths, increasing their trust in personal abilities, helping them learn to engage in relationships, and increasing their self-satisfaction through success (Wehmeyer 2013). Positive psychology can also be useful in moving neurodiverse individuals away from negativity and immobility. Although co-occurring conditions, such as anxiety, depression, and executive dysfunction, are common in neurodiverse individuals, the practice of positive psychology guides these individuals to identify themselves by their strengths rather than their diagnoses or problems.

The third component of the SBMN is positive psychiatry (Jeste et al. 2015). In contrast to traditional psychiatry, positive psychiatry focuses on uncovering positive attributes and strengths. Instead of assessing risk factors, it emphasizes protective factors. In traditional psychiatry, treatment is typically about symptom relief through medication and short-term psychotherapy. In positive psychiatry, the goal is to increase well-being and growth through psychoeducational approaches. Positive psychiatry’s approaches are expected to reduce the emergence of mental health issues.

The final component of the SBMN is Chickering’s seven vectors of development: developing competence, managing emotions, moving through autonomy toward interdependence, developing mature interpersonal relationships, establishing identity, developing purpose, and developing integrity (Chickering and Reisser 1993). Our approach is to practice the seven vectors of development by 1) teaching neurodiverse individuals, either at school or in the workplace, to work toward fulfilling their developmental tasks; 2) encouraging other stakeholders (e.g., school officials or employers) to create neurodiversity-friendly environments; and 3) empowering mental health providers to provide services that can support neurodiverse individuals in fulfilling developmental tasks.

Collectively, the theory of multiple intelligences, positive psychology, positive psychiatry, and Chickering’s seven vectors of development provide a framework to practice the SBMN. This framework can be used to develop strengths-based programs in educational, employment, and clinical settings. In Chapters 4, 5, and 6, we illustrate the use of the SBMN for autism, ADHD, and dyslexia, respectively.

Successful diversity movements serve to change the culture by generating a wider acceptance of differences that results in a higher sense of equity and belonging. All cultural changes have to go through stages of development to achieve progression and sustained outcomes. Any person who knows that a particular behavior change is good for him- or herself has to go through precontemplation, contemplation, preparation, action, and maintenance. Change is generally hard for anyone. However, if the environment is shaped in a manner that facilitates change, the person will feel empowered, and the challenges encountered will be less overwhelming. Similarly, in organizations that embrace neurodiversity and desire to make it part of their culture, implementing changes that will benefit neurodiverse individuals will be much easier if the managers and employees believe that neurodiversity is beneficial for them and their organizations. More and more corporations are becoming interested in the neurodiversity movement. Employees and executives are forming grassroots efforts to initiate discussions on neurodiversity and to propagate the reasons why their organizations will benefit from practicing inclusion and building neurodiversity-friendly environments. As companies formalize their efforts to hire neurodiverse people, a sociocultural evolution will gradually happen. Neurodiversity will not only be a discussion in businesses; it will also be an important topic for students at all ages to learn and discuss. Neurodiversity will gradually become part of our societal culture.

Much has been achieved in women’s rights over the past 100 years. In 1920, the 19th amendment to the U.S. Constitution was ratified, empowering all American women to possess the same rights and responsibilities of citizenship. Today, women are holding key leadership positions in many state and federal government agencies, small and large businesses, and academic institutions. One might ask: Will it take 100 years for neurodiversity to become part of our culture? Will it take many years for neurodiverse individuals to truly receive equal rights and opportunities? Only time will tell. However, as our society becomes more and more digital, the environmental changes may become more and more friendly to neurodiversity. As the internet and digital technology advance, a major evolutionary transition that merges technology, biology, and society is bound to happen (Gillings et al. 2016). Digital technology has already become part of the social fabric of our society. Although digital technology can be a barrier for sustaining the human social interactions we are accustomed to, it has opened doors for neurodiverse people to communicate with others, thus enhancing their ability to be assimilated into their communities and into society at large.

Despite the promises of neurodiversity, barriers to inclusion are currently real, whether socially constructed, congenital, or acquired. Research shows that neurodiverse people are more likely to be incarcerated (Snowling et al. 2000; Young et al. 2018), unemployed (Dickson 2012; Jensen et al. 2000), and unable to achieve academic or career potential (de Beer et al. 2014; Holliday et al. 1999; Kirby et al. 2011; Painter and Welles 2011). Provisions for neurodiverse conditions or “invisible disability” are enacted in disability legislation across the world (e.g., in the United States, the Individuals with Disabilities Education Act in 2004 and the Americans with Disabilities Amendments Act in 2008; in the United Kingdom, the Equality Act in 2010). These laws oblige both educators and employers to make “reasonable” adjustments and accommodations to their environments. Accommodations for neurodiversity are more nuanced than are those for physical disability (e.g., access ramps for wheelchairs, screen readers for visual impairments, and sign language interpreters for hearing impairments). Neurodiversity accommodations may involve changes to the sensory environment, flextime or additional time, assistive technology, extended training, and performance coaching (Telwatte et al. 2017; Weinberg and Doyle 2017).

Treatment and intervention research for neurodiverse conditions, however, is predominantly medical (e.g., Amen et al. 2011; Doyle and McDowall 2019). Notably, one article reviewed the volume and location of dyslexia research in the English language since 1995 (Doyle and McDowall 2015). The authors reported that 62% of articles were published in neuroscience journals, and out of more than 11,000 studies, only 42 single studies (no randomized controlled trials) related to functional, occupational presentation. The paucity of applied psychological research for neurodiversity is well reported (Adamou et al. 2013, Baldwin et al. 2014; Doyle and McDowall 2019; Kirby et al. 2011; Weinberg and Doyle 2017) yet remains unaddressed. Our society seems to be heavily invested in neuroscience research instead of research associated with functional adaptation in neurodiverse conditions. Legislative branches worldwide have not spurred sufficient research in education or occupational fields to address barriers (Karmiloff-Smith 2009; Santuzzi et al. 2014). Our epistemological frame is divergent from the ontological paradigm shift, and research has not maintained pace with practice. We therefore lack reliable evidence upon which to base inclusion activity.

In conclusion, much work has to be done at the legislative level to maximize the potential of neurodiversity. More research is needed to devise better instruments to assess the many strengths of neurodiverse individuals. Meanwhile, the SBMN provides a framework that enables practitioners to develop their programs for the benefit not only of neurodiverse individuals but also of everyone in society.

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