Where does the concept of Neurodiversity come from? 

Education for all through the recognition of neurological variability 

Within the SIMPL4ALL project, it was deemed necessary to introduce the concept of neurological variability or neurodiversity to structure an education that was truly designed ‘for everyone’. But where does this term come from? It is discussed more and more often within the contemporary debate on neurodevelopmental disorders and atypical development, often incorrectly or inconsistently, without, however, really understanding its scope and enormous inclusive power (real and not purely nominal). In fact, ‘this term, in analogy with biodiversity, considers atypical development as individual variation in development and as the result of a natural pressure of life to replicate itself with small variations in its forms‘ (Orsolini, 2019 p. 33). However, not everyone, even within the advocacy movements for people with disabilities, is aware of how this term developed and especially what this term means. Within the advocacy world there are frequent misunderstandings that often run the risk of turning into conceptual aberrations and into real internal struggles such as the “thinking by contrast” (Dewey, 1938) Neurotypicals vs. Neuroatypicals, and the absurd contraposition between advocacy associations of parents and of persons with disabilities themselves in a renewed parent versus child contrast, and the more general contraposition between health professionals and stakeholders.  

Language issues: NT vs ND; Parents vs Children 

To bring order within these contrasts, some terminological clarifications are urgently needed. The term Neurotypical or NT was created within the movements of those people who recognise themselves within the Neurodiversity paradigm and who, as opposed to them, call themselves Neurodivergent or Neuroatypical. Care must be taken, however, as these terms that seem similar are in fact not strictly synonymous. In continuity with what is universally credited as the creator of the Neurodiversity paradigm, the Australian sociologist and autistic person Judy Singer, it is possible to state that the term Neurodiversity “is not a tool to divide us from them” and that Neurodiversity “refers specifically to the limitless variability of human cognition and the uniqueness of each human mind“. It is therefore rightly possible to say that we are all neurodiverse since no two human beings on the planet have identical cognitive functioning.  

However, a question arises. If it is correct to say that we are all neurodiverse, it is not, however, correct to say that we are all neuroatypical or neurodivergent, just as it is not correct to say that ‘we are all somewhat autistic, hyperactive or dyslexic or even disabled’. How then to combine neurological diversity, neuro-atypicality and the whole range of conditions that are part of the DSM-5 as true psychiatric diagnoses of disorders (Autism Spectrum Disorder, Dyslexia, Dysgraphia, ADHD, etc.) that give rise to disabilities and are at the extremes of a normal population distribution? To clarify this point, we are helped by the concept of the spectrum, which places these diversities on a continuum from disorder to broad conditions phenotypes.  

Person First Language and Identity First Language  

Also in this case, a correct use of language is very important, which we can divide into Person First Language and Identity First Language. In the first case, the person is not exhausted in what is primarily seen as a disorder and one therefore speaks of ‘Person with…’. This language is characteristic of parent associations and some advocates such as Donna Williams (1999). In the second case what is essentially seen as a condition identifies, defines the person and “is part of who they are” (Grandin, 1995).  

The use of an Identity First Language is prevalent in the advocacy associations of persons with disabilities as they claim their neuroatypicality from an identity perspective and as a social minority. To be avoided instead are all those prurient expressions such as: ‘Affected by…’, ‘Hit by…’, ‘Suffering from…’ or even worse ‘Sick with…’ not unjustifiably despised by anyone involved in advocacy and more generally to all stakeholders. But if the language of suffering is to be fought anyway, who is then right? Disorder or Condition?  

If, with respect to the Social Model of Disability, where disability is given by the interaction of the different or disturbing characteristics of the person in interaction with the environment, the use of Person First Language (i.e. ‘person with a disability’ in that the person is not exhausted in his or her being disabled) appears more correct than the dilemma disorder or condition, it is possible to affirm that both terminologies are valid and that they should not be thought of in contrast. Within the Neurodiversity paradigm, autism and neurodevelopmental disorders are essentially conditions that can become a disorder when personal characteristics (biological and psychological variables) in interaction with the environment (social variables) create marked difficulties in the person’s functioning. 

It is then up to the individual person to decide how disturbed he or she feels by his or her condition.  

Question of models: Stakeholders Vs Professionals 

Historically, research and intervention on neurodevelopmental disorders and atypical development can be represented as a pendulum that has swung within the ‘Nature-Culture’ binomial, whereby the focus has alternately focused first on culture-related variables and thus on all those processes linked to interpsychic relations (factors external to the individual) and then on nature-related variables and thus on all those individual biological and intrapsychic differences (internal to the individual) that determine the individual’s typical or atypical development.  

This is a long and tortuous process (like any scientific and cultural process) and part of a debate that has been going on since at least the middle of the last century, but which has seen important steps forward combined with many missteps. The concept of Neurodiversity stands right within this debate as a milestone for a new concept that can bring together the two main actors in this process: stakeholders and practitioners. It is a concept capable of considering all three variables that have historically been analysed: psychological, social, and biological within a single paradigm defined as the ‘Bio-psycho-social Model’, which aims to analyse diversities in opposition to the ‘Medical Model’, which instead appears to be centred solely on the identification of deficits that determine atypical development. The pendulum however, as stated by Judy Singer herself, with the introduction of the concept of Neurodiversity begins to swing back to the side of biology, although no longer from a deficit perspective but from a diversity perspective, this time with a decidedly positive connotation. The concept of Neurodiversity as stated by the author herself “is not a psycho-medical diagnosis but a sociological concept that can provide neurological minorities with “an analytical lens to examine social issues such as inequality and discrimination“. In this sense, the step forward is remarkable in that atypical development can now also be considered as an alterity of typical development and no longer solely and exclusively as a minus. Happy and prophetic in this sense appears to be an expression of the Austrian physician Hans Asperger who already in 1938 (Asperger, 1944) stated with a certain confidence, defending his young autistic patients from the Nazi eugenic plan: ‘Different does not mean inferior‘. 

However, Judy Singer herself realised over time that “like any movement that tries to elaborate a Grand Theory of Everything, the social model also has its fundamentalist and extremist tendencies” that are conceived in opposition to health professionals. This tendency is openly condemned by the author who reminds us that “it was researchers in the field of medicine, starting with the doctors Hans Asperger, Lorna Wing, Simon Baron-Cohen and Oliver Sacks, and psychologists, in particular Tony Attwood who laid the foundations that allowed autistic people and their families to recognise each other and form their own movement“. Furthermore, with respect to the scepticism about biology found in some extremist fringes, he points out that ‘it was neuroscience that legitimised us, and it was the language of neuroscience and computer science that was the source of powerful metaphors for our movement‘.  

Where does the concept of Neurodiversity come from? 

It is no coincidence that one of the pioneers of autism has been cited in relation to the concept of Neurodiversity since it was within the nascent Autistic Community, at the turn of the millennium, that this concept took shape and was developed and structured. We are in the aftermath of the scientific community’s universal acknowledgement of the failure of Bruno Bettelheim’s psychoanalytic theories who, initially in connivance with the other autism pioneer Leo Kanner (Kanner, 1943), had traced the cause of autism to the so-called “refrigerator-mothers” (Bettelheim, 1967) linking autism to a certain coldness of parents (and especially mothers) towards their children. With an incredible scientific reductionism, the scholar in question identified the deficit within the social and psychological variables and more specifically in a “defective attachment” (Bowlby 1969) in the mother-child relationship; an attachment that would then determine the subsequent atypical development and onset of the autism disorder. It was a dangerous analysis of psychological and social variables alone with an evident confusion of the cause-effect relationship between them.  

What had Kanner, Bettelheim and so many other scholars seen, that had misled them? Curiously enough, about thirty years after Bruno Bettelheim’s theories came out, an Australian sociology student, Judy Singer, coined the term Neurodiversity from her stormy relationship with her autistic mother in a 1998 article published in the journal Disability Discourse, the title of which refers directly to a reproachful phrase she and her father used to address to their mother: Why can’t you behave like a normal person for once in your life? From a nameless problem to the emergence of a new category of difference. (Valtellina, 2020, p. 45). She certainly deserves credit for coining the term that she introduces in a few but incisive words: 

For me, the key significance of 'Autism Spectrum' lies in its claim to anticipate a policy of Neurologically Diversity, or 'Neurodiversity'. Neurologically Diverse' is an addition to the already known political categories of class/gender/race and will raise awareness of the social model of disability. 

The development of Neurodiversity takes post-modern fragmentation to the next stage. Just as the post-modern era occasionally sees an overly entrenched belief blow up, even those beliefs we take most for granted: the fact that we all see, hear, touch, smell and gather information in much the same way (unless we are visibly disabled) is about to vanish. 

(Judy Singer, 1998) 

We are light years away from the context of psychoanalytic clinics, from the palaces of medicine and even from behavioural psychology, which in the study and treatment of classic autism, and not, only was gaining increasing acceptance. We are within Disability Studies and the magnifying glass is not medical but sociological and anthropological. Judy Singer coined the term Neurodiversity first, adopting a perspective that is indeed sociological but above all biological and genealogical. In this sense an important reference is Asperger’s who first took such a position in his 1944 essay and which, read today in the light of Neurodiversity sounds almost prophetic:  

Often, we found among these children descendants of important families of scientists and artists, sometimes one had the impression that in the child only the quirks and oddities remained of past greatness, which are often present even in great scientists. Despite their considerable eccentricities, many of these fathers occupied high positions, which contributes to the question of the social significance of this personality type [...] an observer oriented towards individual psychology would explain the entire picture of the autistic state from the situation of an only child, seeing in it an exogenous cause [...] but as is the case in so many other contexts, the individual psychology way of looking at things confuses cause with effect [...] anyone who knows, moreover, that autistic children who grow up among siblings develop in exactly the same way as only children, cannot but find an explanation based on an exogenous cause absurd. No, the fact that these children are autistic is not due to the unfavourable educational influences to which a child without siblings is exposed, but has its basis in the predispositions inherited from parents who are themselves autistic. 

(Hans Asperger, 1944) 

Judy Singer’s original contribution within which the concept of Neurodiversity was created, however, is not her 1998 article but a work that preceded it and whose gestation perhaps took up the space of a lifetime. We are talking about the highly autobiographical passages contained in his degree thesis in Sociology, composed between 1996 and 1997, formally presented in 1998 and entitled ‘Strange People. The birth of a community among people on the autistic spectrum. A personal exploration of a new social movement based on neurological diversity’ (Singer, 2016). This thesis, although years in the making, has several elements of originality. A first element is the conceptual transitions that the Australian scholar experienced on her own skin. During her childhood, she had been an eccentric child, the daughter of a mother with particularly strange behaviour, who then in turn became the mother of a child with atypical development, who with much difficulty was then classified within the level 1 autism spectrum disorder (Asperger’s Syndrome for DSM-IV-TR nostalgics). Like many similar cases, it was the daughter’s diagnosis that first led her to discover her mother’s membership of the spectrum and then, as icing on the cake, her own placement “somewhere within the spectrum” (Singer, 2016).  

A second element of originality is constituted by the way in which Judy Singer carried out her research for her degree thesis by inserting herself as a participant within the autistic community and precisely in the forum Independent Living on the Autistic Spectrum (abbreviated InLv), a support and self-mutual aid group created by Martijn Dekker. Today we would define the research carried out by Judy Singer as action-research (Lucisano, & Salerni, 2004) and the Australian researcher herself is very keen to emphasise in her text the fundamental contributions she received from feminist and post-modern research theories that first questioned the paradigm of objectivity and the separation between the observer and what is observed. With respect to her situation as researcher, mother, daughter, and person on the spectrum, hers is literally a ‘view of many places’ that has given us a ‘new category of diversity‘. 

Other important contributions to the concept of Neurodiversity 

Speaking of the emergence of the concept of Neurodiversity, however, at least two credit notes should be made to two American journalists, authors of important contributions. The first credit note goes to Harvey Blume, who is often credited along with Judy Singer for coining the term and being the first to speak of ‘neurodiversity’. The Australian sociologist herself repeatedly mentions the American journalist with whom she formed a friendship and collaboration that was very important for the formation of the concept within the InLv forum of which Blume was also a user. One of the fundamental merits of the American journalist, and for which he is cited by Singer herself in her degree thesis, was that of having identified the formation of the Autistic Community starting from the analogy with that of the Deaf Community within the Disability Right Movement. In his famous 1997 article “Autism & Internet” or “it’s the stupid wiring! ” (Valtellina, 2020, p. 31) basically identifies not only the Autistic Community as an aggregation of people similar in wiring but, going a little beyond the simple computer metaphor, states peremptorily that “simply for many autistic people Internet is like Braille” and it is precisely this language that allows them to “circumvent one of the deficits of the Triad defined by Sacks: social interaction” (Blume, 1997).  

A second note of credit, goes to Steve Silberman who, profoundly influenced by both Judy Singer and Harvey Blume, contributed decisively to the dissemination of the concept of Neurodiversity first with the 2001 article “The Geek Syndrome” (Valtellina, 2020, p. 59) and then through the 2015 best seller “Neurotribù. The Talents of Autism and the Future of Neurodiversity‘. In these two writings, the American journalist, through accurate research and documentation, starting from the alleged phenomenon of an unidentified ‘autism epidemic‘, traces the core of the Autistic Community to the geeks living in Silicon Valley. Asperger’s syndrome or ‘engineer’s disorder‘ seems to be prevalent in the creative geniuses of Silicon Valley who are shaping the modern world through computer and technological inventions. Such people are also gaining considerable economic and social clout, and all this far from the stereotype of the brilliant but practically incapable autistic person. An example of this is the recent statement by Elon Musk (the Tesla owner and one of the ten richest men on the planet) who declared not only that he is a person in the Autism Spectrum but that it is precisely to this neurological diversity of his, this different way of thinking that he owes much of his immense fortune. Further proof, if proof were needed, that ‘the world needs all kinds of minds‘ and therefore Neurodiversity. 

Conclusions 

Alongside the classical categories of diversity such as gender, religion and ethnicity, the concept of neurodiversity or neurological diversity is increasingly emerging. This concept becomes fundamental from the perspective of the bio-psycho-social model to conceive of atypical development and neurodevelopmental disorders within a framework that considers them not only as deficits but as otherness and, in some cases, as a real source of resources for humanity as a whole. This concept should inform the social sciences and especially psychology in the study of the individual, his development and his specific cognitive functioning, and pedagogy in the creation of evidence-based educational methods no longer based on a norm but respectful of the specific neurological diversity existing between individuals. The rose of the sciences is increasingly missing the fundamental contribution of sociology and anthropology, and Disability Studies continues to claim more and more space. Ultimately, even in the presence of marked difficulties in functioning and major neurodevelopmental disabilities, only a specific understanding of the Neurodiversity inherent in individuals can provide the tools to facilitate each individual developmental trajectory (whether Neurodivergent or Neurotypical) towards its maximum potential. 

References 

1. Asperger H. (1944) Die «Psichopathen» in Kindesalter in Archive fur Psychiatrie und Nervenkrankheiten, vol. 117. Trad. It. Franco Nardocci (a cura di) (2003), Bizzarri, intelligenti e isolati. Il primo approccio clinico e pedagogico ai bambini di Hans Asperger, Erickson. 
2. Blume H. (1997) «Autism & the Internet» o «it’s the wiring, stupid! Trad it. «L’Autismo & Internet» o «è il cablaggio stupido! in Valtellina E. (a cura di) (2020) L’autismo oltre lo sguardo medico, Erickson, pp. 29-43. 
3. Dewey J. (1938) L’unità della scienza come problema sociale. Trad. it. di Piero Lucisano in CADMO 
4. Grandin T. (1995) Thinking in pictures and other reports from my life with autism. Vintage books. Trad. It. (2001) Pensare in immagini e altre testimonianze della mia vita di autistica, Erickson 
5. Orsolini M. (a cura di) (2019) Pensando si impara. Stimolare l’attenzione, le funzioni esecutive e la memoria di lavoro nei bambini con bisogni educativi speciali, Franco Angeli. 
6. Silberman S. (2001) The Geek Syndrome, Wired. Trad. It La Sindrome dei Geek in Valtellina E. (a cura di) (2020) L’autismo oltre lo sguardo medico, Erickson, pp. 59-75. 
7. Silberman S. (2015) NeuroTribes. The Legacy of Autism and the Future of Neurodiversity. Trad. It. (2016) NeuroTribù. I talenti dell’autismo e il futuro della Neurodiversità, Edizioni LSWR 
8. Singer J. (1998) Why can’t you be normal for once in your life? From a problem with no name the emergence of a new category of difference in M. Corker e S. French (a cura di) (1999), Disability discourse Open University French. Trad it. Perché non riesci a comportarti da persona normale, per una volta nella vita? Da un «problema senza nome» all’emergenza di una nuova categoria della differenza in Valtellina E. (a cura di) (2020) L’autismo oltre lo sguardo medico, Erickson, pp. 45-58. 
9. Singer J. (2016) Neurodiversity. The Birth of an Idea. 
10. Williams D. (1999) Nowbody Nowhere. The remarkable autobiography of an Autistic Girl. Jessika Kingsley Publisher. Trad. It (2002) Nessuno in nessun luogo, La straordinaria autobiografia di una ragazza autistica, Armando Editore. 

Essential links 

1. https://neuropeculiar.com/2020/03/14/che-cose-la-neurodiversita/ (accessed 30 June 2021)  
2. https://www.inlv.org/inlv-historic.html (accessed 30 June 2021) 
3. https://www.repubblica.it/salute/2021/05/10/news/elon_musk_ho_la_sindrome_di_asperger_ecco_come_funziona_il_mio_cervello_-300318913/ (accessed 30 June 2021) 
4. https://neurodiversity2.blogspot.com (accessed 30 June 2021)  

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SIMPL4ALL embraces neurodiversity. What is neurodiversity? Learn more about its history and meaning, because neurodivergent or neuroatypical people, are different, not less!