Autism: A New Introduction to Psychological Theory and Current Debate - Tiffany Watt Smith 2019
The history of autism
There are two strands to the history of autism — the history according to professionals, mostly clinicians and latterly researchers, and the history according to autistic people and their families. Here we provide a brief overview of key influential figures from both strands, who have helped to shape how autism is viewed today.
1. Kanner’s autism
He wandered about smiling, making stereotyped movements with his fingers, crossing them about in the air. He shook his head from side to side, whispering or humming the same three-note tune. He spun with great pleasure anything he could seize upon to spin… . When taken into a room, he completely disregarded the people and instantly went for objects, preferably those that could be spun… . He angrily shoved away the hand that was in his way or the foot that stepped on one of his blocks.
(Kanner, 1943; reprinted in Kanner, 1973)
This description of a 5-year-old boy called Donald was written over 70 years ago in Kanner’s landmark paper Autistic Disturbances of Affective Contact. The term “autistic” comes from Bleuler (1908), who used the word (from the Greek “autos” meaning self) to describe the social withdrawal seen in adults with schizophrenia. Despite radical changes in our conceptualisations of autism, clinicians and teachers today still remark on similar features to those described by Kanner so many years ago. Moreover, autism has almost certainly always existed. Folktales can be found in nearly every culture that tell stories of individuals with unusual behaviour and a literal interpretation of the world. The following stories come from two very different cultures, but each centre on a character who we might now describe as autistic. The first tale comes from India:
One time Sheikh Chilli was hotly in love with a girl, and he said to his mother: “What is the best way of making a girl fond of one?” Said his mother: “The best plan is to sit by the well, and when she comes to draw water, just throw a pebble at her and smile”. The Sheikh went to the well, and when the girl appeared, he flung a big stone at her and broke her head. All the people turned out and were going to murder him, but when he explained matters, they agreed that he was the biggest fool in the world.
(From 151 Folktales of India, Kang & Kang, 1988)
The second folktale comes from Malta:
In a village, there lived a boy called Gahan. It was Sunday and Gahan’s mother wanted to go to church early. But Gahan didn’t like getting up in the mornings, so he said he would stay in bed. When his mother was ready to go, she came into Gahan’s room. “I’m off to church now”, she said. “When you get up, if you decide to come to the church, be sure and pull the door behind you”. “Don’t worry, mother”, said Gahan, “I won’t forget”. After a while Gahan climbed out of bed, washed and dressed and was just about to leave when he remembered what his mother had said. He opened the front door, pulled it down, held it by the knocker and began to pull it along behind him. You can imagine how all the people laughed when they saw Gahan walking along the street dragging the door behind him. When he arrived at the church he walked straight in. But he made such a banging and clattering noise that everyone turned to see what was happening. They, too, thought that it was very funny, but Gahan’s poor mother was very embarrassed. “What on earth are you doing?” she asked. “Well, mother”, answered Gahan, “you asked me to pull the door behind me if I left the house, didn’t you?”
(From Folktales from Australia’s Children of the World, Smith, 1979)
These tales suggest that the unexpected behaviours of people with autism have been recognised in many different cultures over the centuries. But it was not until Kanner wrote about a group of 11 children with a puzzling but similar constellation of features that autism was clinically recognised. These features, as described by Kanner, included the following:
Extreme autistic aloneness: the children did not relate to people as expected and appeared to be happiest when left alone.
Anxiously obsessive desire for the preservation of sameness: the children were extremely upset by changes of routine or surroundings, such as a different route to school, or a rearrangement of furniture.
Excellent rote memory: the children Kanner saw showed an ability to memorise large amounts of material (e.g. an encyclopaedia index page), which was out of line with their apparent learning difficulties.
Delayed echolalia: the children repeated language they heard, but did not appear to use words to communicate beyond their immediate needs. They would also use “you” when referring to themselves and “I” for the other person (termed “pronoun reversal”), following from a direct repetition of the other speaker’s remark. In the same way, children with autism may use the whole of a question instead of a typical request (e.g. “Do you want a sweet?” meaning “I want a sweet”).
Hyper-sensitivity to stimuli: Kanner noticed that many of the children he saw reacted strongly to certain noises and to objects, such as vacuum cleaners, elevators and even the wind. Some also had feeding problems or would eat only a very restricted diet.
Limitation in the variety of spontaneous activity: shown in the children’s repetitive movements, verbalisations and interests. However, Kanner felt that the children showed a good relation to objects, such as dexterity in spinning things or completing jigsaw puzzles.
Good cognitive potentialities: Kanner believed that the outstanding memory and dexterity shown by some of his cases reflected a superior intelligence, despite the fact that many of the children had been considered to have severe learning difficulties.
Highly intelligent families: Kanner remarked that all his cases had intellectual parents. However, this is probably due simply to a referral bias — Kanner’s sample is unlikely to have been representative; only the well-connected managed to see the famous child psychiatrist at Johns Hopkins Hospital.
In his later writing (Kanner & Eisenberg, 1957), Kanner isolated just two of these many features as the key elements of autism: “Extreme isolation and the obsessive insistence on the preservation of sameness”. The other aspects he considered to be either secondary to and caused by these two elements (e.g. communicative impairments), or nonspecific to autism (e.g. stereotypies). In Chapter 3, we will reassess Kanner’s description of autism and consider changing diagnostic criteria in relation to that original set of case studies.
2. Asperger’s autism
While Kanner is often considered the first person to have characterised autism, Hans Asperger was working at the same time in Austria with a group of children he also identified as having a shared set of features (Asperger, 1944). Recent examinations of the history of autism research and clinical practice have raised the question of whether Asperger ’got there first’ and Kanner partly drew on his original work (Silberman, 2016). This possibility may have been hidden by the fact that it took many decades for Asperger’s work to be translated from the original German (Asperger, trans. Frith, 1991). Questions have also been raised, just as we were finalising this book, about Asperger’s work under the prevailing Nazi regime, with a new paper revealing a disturbing level of complicity from the physician (Czech, 2018). Asperger’s writings have shaped our understanding of the condition and cannot be ignored in the history of autism. As we write, the autism community is adjusting to the shocking new information about Asperger’s role in the evil treatment of disabled children by the Nazi death machine and discussing whether the term ’Asperger’s syndrome’ (no longer in the diagnostic manuals) is still appropriate and acceptable.
Kanner and Asperger were both foundational to our understanding of autism and their descriptions are similar in many ways. Both men believed the social differences in autism to be innate (in Kanner’s words) or constitutional (as Asperger put it) and to persist through life into adulthood. In addition, Kanner and Asperger both noted the children’s lack of eye contact, their stereotypies of word and movement, and their marked resistance to change. The two authors report the common finding of isolated special interests, often in idiosyncratic objects or topics. Both seem to have been struck by the attractive appearance of the children they saw. Kanner and Asperger make a point of distinguishing the disorder they describe from schizophrenia, on the basis of three features; the improvement rather than deterioration in their patients, the absence of hallucinations and the fact that these children presented as autistic from their earliest years. Lastly, both Kanner and Asperger believed that they had observed similar traits — of social withdrawal or atypicality, intense delight in routine and the pursuit of special interests to the exclusion of all else — in the parents of many of their patients.
There are three main areas in which Asperger’s and Kanner’s reports disagree, if we believe that they were describing the same sort of child. The first and most striking of these is the child’s language abilities. Kanner reported that 3 of his 11 patients never spoke at all and that the other children did not use what language they had to communicate. Asperger, by contrast, reported that each of his four case study patients (and, by implication, most of the unspecified number of such children he met) spoke fluently — even “like little adults”. Asperger notes their “freedom” and “originality” in language use, and reports that two of his four cases had a tendency to tell “fantastic stories”.
Asperger’s description also conflicts with Kanner’s on the subject of motor abilities and coordination. Kanner (1943) reported that “several of the children were somewhat clumsy in gait and gross motor performance, but all were very skillful in terms of finer muscle coordination”. Asperger, by contrast, described all four of his patients as clumsy and recounted their problems not only with school sports (gross coordination) but also with fine motor skills such as writing.
The last area of disagreement in the clinical pictures painted by Asperger and Kanner is that of the child’s learning abilities. Kanner believed that his patients were best at learning rote fashion, but Asperger felt that his patients performed “best when the child can produce spontaneously” and suggests that they are “abstract thinkers”. The same dichotomy can be observed in different approaches to autistic support and education today.
How are we to understand and resolve these contradictions? One possibility is to separate what we refer to as autism into sub-categories: autism vs. Asperger’s syndrome. Indeed, these sub-types were introduced into previous iterations of the diagnostic manuals (more on this in Chapter 3). Another is to consider autism in terms of a spectrum that varies not only between people but also across the lifespan and in different contexts. This was the main contribution made by our next foundational clinician-researcher in the history of autism, Lorna Wing.
3. Wing’s autism
For a long time, autism research moved slowly — although researchers such as Michael Rutter and Eric Schopler were publishing new ideas and results, attention to this ’very rare’ condition was limited and major developments did not take place until some decades later. At that point, Lorna Wing — an exceptional clinician, researcher and the parent of an autistic daughter — began to pioneer a new understanding. Next, we provide a few more examples of how parents of children with autism have shaped understanding, awareness and especially service provision. However, a more in-depth history of autism research and practice can be found elsewhere (Feinstein, 2011; Donvan & Zucker, 2017), revealing the massive contribution made by people — such as Bernard Rimland in the USA — who had both family and professional knowledge of autism.
In 1979, Wing and her colleague Judith Gould published a seminal paper, which first introduced what came to be called the “triad of impairments” (Wing & Gould, 1979). The paper reported on a large epidemiological survey, raising the methodological bar relative to the groups of case studies which had been used to define autism up to that point. Drawing on a screened sample of 914 children, and detailed data from 132, Wing and Gould grouped the features of autism into three categories: social interaction, communication and imagination. Social interaction and communication difficulties aligned closely with the original observations by Kanner (and Asperger, though at that time, his work was not yet known in England). Wing and Gould noted atypicalities in the interaction styles of children and absence, or unusual use, of speech. The ’imagination’ domain was a novel way to conceptualise the presence of repetitive and stereotyped behaviours, as well as unusual styles of play, especially an absence of pretending, or “symbolic play”. Later, this work was re-capitulated in adults (Shah et al., 1982), detecting the same clusters of features in a large clinical sample. This last observation, of reduced pretend play, was also foundational to the ’Theory of Mind’ (ToM) account of autism (see Chapter 5).
Wing and Gould’s paper also introduced a new way to sub-categorise children based on their social approach style (at any one point in time) into one of three groups (see Figure 2.1 and also Castelloe & Dawson, 1993):
Aloof: these children were described as being either “aloof and indifferent in all situations” or as making social contact in order to satisfy a need, but then retreating immediately.
Passive: this group accepted social contact, but did not seek it out. In the playground, for example, they might be given a role in a play scenario, but require direction from their non-autistic peers to sustain it.
Active but odd: these children did approach others to engage in social interaction, but did so in an atypical way. A consequence of their peculiar behaviour was that they “were sometimes rejected by their peers” — an early flag for the fact, now increasingly recognised, that the responses of non-autistic people play a key role in the experience and adaptation of autistic children (Grossman, 2015).
Attempts at sub-grouping have continued using more data-driven approaches (e.g. Grzadzinski et al., 2013; Prior et al., 1998; Stevens et al., 2000) though to date, none of these has proven definitive. Meanwhile, Wing took a different tack with the publication of her book The Autistic Spectrum (1996), which gave prominence to this term, highlighting variability between individuals who share the same broad diagnosis. In particular, Wing emphasised that difficulties and strengths present themselves differently across the lifespan, and in different environmental contexts. Her work, published over a period in which diagnoses of autism were dramatically on the increase, had a particular impact on educational practice as teachers, more than clinicians, began to take responsibility for the progress of children on the autism spectrum.
Figure 2.1 An illustration of Lorna Wing’s “aloof, passive, odd” sub-types
Reproduced from Uta Frith, 1989, with kind permission of the author and of the artist, Axel Scheffler.
4. Myths and controversies
So far, we have emphasised the contributions made by some of the early pioneers to the clinical characterisation of autism. This history of course includes many other key figures, and there is further reading by and about some of these at the end of the chapter. However, the clinical and academic history of autism is also sadly laden with tragic examples of negative characterisations of autism, leading to misguided and sometimes abusive treatments. While we do not have space to explore these in detail, it would be remiss of us to ignore them.
One of the most pervasively damaging theoretical accounts was the so-called refrigerator mother model, a psychogenic theory that attributed the presence of autism in children to a lack of caring and responsive parenting, rather than to a biological cause (see Donvan & Zucker, 2017 for a full history). Blame was laid wholly at the feet of the mother, in line with the heavily gendered parenting roles of the time. Many autistic children were taken from their families and raised in institutions, and mothers were given psychotherapy to try to correct their parenting. One early approach to educating autistic children was Applied Behaviour Analysis (ABA), developed by Ivar Lovaas using the principles of conditioning first established in animals. Children were taught basic skills in discrete steps, using both reward and punishment to encourage ’correct’ behaviour. While ABA has evolved considerably from this time, and now covers a wide array of approaches, it remains controversial to many for its apparent pursuit of a highly normative ’ideal’ child, focusing on behaviour alone and reliance on evidence of efficacy that has been considered weak (Dawson et al., 2008).
The often-upsetting history of autism research and practice is essential reading for anyone choosing to specialise in the field. While we designate it as ’history’, many autistic adults today were raised in this context, and psychogenic theories still have a harmful influence in some parts of the world. For further reading we point our readers to Neurotribes (Silberman, 2016) and In a Different Key (Donvan & Zucker, 2017).
5. Baron’s autism
Thankfully, many parents survived the damage done by psychogenic theories and have been prominent in shaping research, and especially practice. Michael Baron, whose son was one of the earliest children diagnosed with autism in the UK, founded a school for autistic learners, together with other parents. This group went on to evolve into today’s National Autistic Society (NAS) which provides information and support to autistic people and their families across the UK. Founded in 1962, the NAS was the first autism association in the world and inspired and fostered similar parent-led groups internationally. In 2003, the National Autistic Society appointed Dr Larry Arnold as their first autistic trustee — a landmark moment in the autistic rights movement. Scottish Autism was similarly founded by parents, with five families mortgaging their houses to set up what was then The Scottish Society for Autism in 1968 and creating the first autism-specific school in Scotland. Baron continues to be a prominent spokesperson on behalf of autistic people, especially those with a learning disability, and their families.
Parents have also been prominent in shaping public perceptions of autism and have inspired researchers. Browsing in a second-hand bookshop as a student, Francesca chanced upon Clara Claibourne Park’s account (1968) of raising her autistic daughter, which sparked her enduring interest in autism. Almost two decades later, Sue was captivated as a PhD student by Charlotte Moore’s frank and affectionate book (2004) about her autistic sons. Parents have also founded some excellent online resources for learning more about autism, building communities of expertise and shared support — the Thinking Person’s Guide to Autism is an excellent place to start.
The pioneering efforts of parents have left a legacy of charitable autism support organisations and schools from which the community continues to benefit. However, there are also tensions between parts of the autism community (largely driven by non-autistic parents of autistic children) that emphasise a need for cure or rehabilitation versus parts of the community (largely driven by autistic adults) that are focused on acceptance and rights. When the co-founders of Autism Speaks (a USA parent-led charity) visited the UK and spoke about their mission ’to fight and cure autism’ (making an analogy with fighting cancer), the Something About Us campaign, led by Dinah Murray, was developed to “establish a creative autistic presence; give autistic people a chance to say what people most need to hear about autism; have the widest possible exposure; rebalance a specific event to diminish Autism Speaks’ impact; create alliances and generate obligations” (Murray, personal communication). Similarly, the title of the book Loud Hands: Autistic People Speaking was selected specifically to counter the notion of “quiet hands” — i.e. no ’stimming’ or flapping — which is a part of many early intervention programmes. For psychologists working in practice or research, these tensions between different perspectives within the broad community of stakeholders can be challenging to navigate and interpret. Being informed about the differing perspectives, and the personal experiences which underlie them, is crucial for anyone in the field.
6. Sinclair’s autism
A history of autism cannot be complete without considering the accounts of autistic people. Women have been particularly prominent in this literature — Temple Grandin’s Emergence: Labelled Autistic was the first autistic autobiography and, along with Donna Williams’ Nobody, Nowhere, became a classic in the growing canon of first-person accounts of autism. There are also academic writers on the subject, one of the most prominent of whom is Jim Sinclair. Sinclair was an early leader for the autistic community, co-founding Autism Network International in 1992. Xe1 has subsequently shaped scholarly argument in support of neurodiversity, writing in 1993 that:
1We believe this is Dr Sinclair’s preferred pronoun.
autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with.
Later, in Being Autistic Together Sinclair describes how Autism Network International was set-up and the founders discovered that “the time autistic people got to spend together was precious to many of us. People enjoyed it and wanted more of it” (Sinclair, 2010). As a consequence, the first autistic-led event for autistic people and their allies, Autreat, was launched in 1996, inspiring similar events around the world.
Simultaneously in Europe, Martijn Dekker launched Independent Living on the Autism Spectrum, or InLv, an online network with the slogan “where those who are different, find that they’re not alone”. Autistic-led organisations are now proliferating and include the Autistic Self-Advocacy Network (founded 2006), Autism Rights Group Highland (founded 2005) and the Autism Women’s Network (founded 2009). In 2005, Aspies for Freedom celebrated the first Autistic Pride Day, now celebrated internationally on June 18 every year. More recently, the journal Autonomy was launched by autistic academics to publish disability rights and sociological autism research, often by neurodivergent scholars (Arnold, 2013).
Led by autistic advocates, community leaders and scholars, we now find ourselves at a turning point in the conceptualisation of autism. Autistic people have become pioneers of the larger disability rights agenda, emphasising a social model of disability (Shapiro, 1994; Solomon, 2008) and demanding a role in shaping the policies and services that affect their lives (Ne’eman, 2010). This characterises the disabling consequences of autism, like all disabilities, as being the result of an environment that fails to enable individuals who do not operate in the same way as the mainstream majority. A more nuanced account, the post-social model, shifts the focus subtly from the environment as the culprit to the interaction between the individual and their environment (see Chapter 9 for more on this). To take a simple example, someone who doesn’t walk requires both a personal aid (e.g. a wheelchair) and an enabling environment (e.g. ramps, wide doorways) to get around. Disability rights campaigners are beginning to have success in placing ableism (prejudice against disabled people) alongside racism, sexism and homophobia as a major source of disadvantage in our society.
Within the disability rights movement, autism is often characterised as a ’hidden disability’ — meaning that it is not marked out by obvious physical features. Other hidden disabilities include many of what psychologists term “neurodevelopmental disorders” — e.g. attention deficit hyperactivity disorder, dyslexia, dyspraxia, epilepsy and Tourette’s syndrome. Moving away from the negative terminology of ’disorder’, the term neurodiversity was coined by InLv member Judy Singer, who wrote, “We are beginning to divide ourselves … according to something new: differences in ’kinds of minds’ … swinging the ’Nature-Nurture’ pendulum back towards ’Nature’” (Singer, 1998). Neurodiversity thus describes variability in brain structure and function, and resulting cognitive processes, accounting for differences between all individuals and, in cases of neurodivergence, also giving rise to diagnostic categories. Neurodivergent people may find that their experiences of the world and of other people do not align with the norm, and this is attributed to basic, underlying neurological differences. Crucially, neurodiversity dictates that neurodivergent people are different, not less.
It is important to emphasise that adopting a neurodiversity stance does not preclude providing support to people in need, nor does it deny the very real challenges experienced by many autistic people and their families. Autism is often accompanied by mental health difficulties (e.g. anxiety, depression), medical conditions (e.g. epilepsy) and behavioural features (e.g. self-harm, poor sleep, limited diet) which have significant negative impact on the individual and those around them. Autism is also associated with intellectual disability in many cases (though see Dawson et al., 2007, for thoughts about intelligence testing and autism). Limited verbal communication and/or additional language impairment presents a significant barrier for many. Even where autism is accompanied by high IQ and fluent speech, it might be categorised as a learning difficulty as it offers barriers to learning, where learning is expected to occur in a typical classroom. All of these issues are worthy of research attention and targeted support. The essence of neurodiversity tells us that, in identifying such areas for support and measuring suitable outcomes, our goal should be to provide relief in areas of need but not to eliminate an individual’s neurodivergent status.
The motto “nothing about us without us” foregrounds the need for disabled people to be involved in all aspects of decision-making about disability. In the context of autism practice and research, we must work closely with autistic people and their allies to deliver research that matters to them (Milton, 2014). This does not mean abandoning psychological theory nor scientific rigour. It does mean developing participatory research practices (Fletcher-Watson et al., 2018; Scott-Barrett et al., 2018) and framing our questions, designing our methods and disseminating our findings in a way that is respectful and embracing of autistic differences.
8. Current debates
The history of autism has moved through phases, largely influenced by English-speaking clinicians drawing on a series of case studies and then bigger data sets. Increasingly, our conceptualisations of autism are being influenced by autistic scholars and the autistic community. The clinical model of autism at each phase since the condition entered the diagnostic books has influenced the focus of research at that time. Today’s neurodiversity framework is just beginning to have an impact on research, and some of the latest findings in this area are covered in Chapter 9. Much has been learnt about autism, but much still remains to be understood. In the next chapters, the current state of knowledge concerning the behavioural, biological and cognitive nature of autism will be reviewed, and some continuing debates and future research questions are discussed.
What is next for our understanding of autism? The autism field has moved through many phases, and we can expect dramatic shifts to come. Can we envisage a future in which autism leaves the diagnostic manuals all together and becomes a self-determined personal identity? If so, what will this mean for the provision of evidence-based supports for the difficulties experienced by autistic people?
How can we cater to diversity within the autistic community? At the moment, the majority of autistic people who are playing a role in shaping research and practice are those without intellectual disability. It remains challenging to engage directly with autistic people who are minimally verbal or learning disabled. The viewpoint of parents can be very valuable here, but these may not easily reconcile with the perspectives of autistic people. Certainly, respect for, and acceptance of, autism must encompass the whole community.
Does “neurotypicality” necessarily exist and what does that mean for neurodivergence? Neurodivergence is used to describe everyone who is categorically distinct from a neurotypical standard. All autistic people are neurodivergent, but not all neurodivergent people are autistic — other neurodivergent people might have ADHD or Tourette’s syndrome, for example. Meanwhile, the term neurodiversity encompasses individual differences between all people. Neurodiversity, like biodiversity or ethnicity, doesn’t automatically imply that there is a norm from which all others diverge. Instead, we are all different and diverse. Taken this way, how can we use the concept of neurodiversity to encourage greater acceptance, without undermining neurodivergent people’s need for support and understanding?
COMMUNITY CONTRIBUTION: MARTIJN DEKKER — AUTISTIC ADVOCATE AND FOUNDER OF AUTISTIC ONLINE COMMUNITY, INLV
The history of autism is one of competing and opposing narratives. As described in this chapter, in the 1940s, Leo Kanner and Hans Asperger described autism in terms of case studies with interpretations: one form of narrative.
In the 1960s and 1970s, parents started organising to counter the pernicious narrative that they were responsible for causing their children’s autism. Understandably, then, these parents became the centre of their own narrative. Applied Behaviour Analysis (ABA) and Intensive Behavioural Intervention came along, offering the promise of normalisation to parents whose autistic children had been written off as hopeless. But if a child failed to be rendered ’indistinguishable from their peers’, parents were blamed once again: for not trying hard enough, for not following the method to its painful and harmful extremes, etc. The result was an entrenched attitude of distrust and defensiveness among ’tragic hero’ parents.
Meanwhile, autistics were increasingly seen as non-persons. As ABA pioneer Lovaas said in an interview, “You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense” (Chance, 1974). As a result of such attitudes, autistic people were, and in many of the world’s places still are, ’disappeared’ to institutions, tortured, abused, ignored, etc. Through all the changes and new paradigms, one factor remained constant: the perspective of autistic people was consistently erased from the narrative.
Then, in the early 1990s, the Internet ceased to be a network for the academically privileged and was made available to mere mortals. Autistic people, who previously had no way of communicating with each other, quickly started finding each other online. In 1992, Autism Network International started the ANI-L mailing list, the first online community run for and by autistics. Hosted by Syracuse University, ANI-L quickly started developing its own autistic subculture and political paradigm (Sinclair, 2005).
In 1996, only just diagnosed after a childhood and young adulthood spent being different without knowing why, I entered the scene as the need was felt for an alternative to ANI-L. Long before social media, creating a new online group was difficult, but I already had experience with programming and online communication. Using my home dial-up line and specialist software, I started my own entirely self-hosted set of email groups for and by autistics, emphasising inclusion and diversity instead of one shared culture and one shared set of political beliefs. The group was called InLv, an abbreviation of ’Independent Living on the autistic spectrum’.
Spread over many parts of the world, participants discovered their autistic identity through a shared, yet deeply personal, exploration of a different way of being. For all our cultural, political and neurological diversity, we found plenty in common, not only in the shared experience of trauma and marginalisation but, for many of us, also in a certain fundamental autistic way of being (Dekker, 1999). Text-only communication proved a gateway to understanding, not a barrier. ’Autism’ became my key for belonging, for the first time in my life, to a community of some description. The idea of being autistic became embedded in my sense of identity.
Early on, the notion emerged from discussions on InLv that human neurology is innately diverse, an aspect of biodiversity, and that this neurodiversity (Singer, 1998) is as valuable to the human ecosystem as any other form of diversity. We conceived neurodiversity as an inherently inclusive notion. Far from ’dictating’ that neurodivergent people are ’different, not less’, we were very much including those of us who felt less or broken, accepting them as human beings on par with those who felt non-disabled or even superior. Neurological diversity does not prescribe anything, such as how one should consider one’s own condition. It simply exists; it’s a fact. What we were advocating was the political recognition of the logical and ethical consequences of that fact — that is, equal rights for all neurodivergent people, including our right to exist, live, love, work, procreate, etc., like anyone else.
These days, neurodiversity activism has, in large part, moved beyond that original idea. Many now promote a specific and prescriptive ’paradigm’ that, by claiming there is no such thing as a suboptimal neurological configuration (Grace, 2015; Walker, 2014), excludes autistic people who find themselves disabled or broken. Too often, I hear of autistic people joining a group of neurodiversity advocates hoping to meet kindred spirits, only to find themselves being told precisely what to believe, how to identify and how to communicate, with any perceived transgression resulting in a swift ban. An ironic situation for a movement founded on the idea of embracing diversity.
Like those 1960s—1970s parents trying to prove they didn’t cause their children’s autism, autistic activists these days are ever more distrustful and defensive. In trying to defend our right to exist, we are falling into the trap of taking our own narrative too seriously. The challenge neurodiversity activists face as we approach the 2020s, then, is basically one of growing up and learning once again to accept those who are different from ourselves.
Chance, Paul. (1974). ’After you hit a child, you can’t just get up and leave him; you are hooked to that kid’: O. Ivar Lovaas interview with Paul Chance. Psychology Today, January 1974, http://neurodiversity.com/library_chance_1974.html
Dekker, Martijn. (1999). On our own terms: Emerging autistic culture. Autism99 online conference. Republished 2015, www.autscape.org/2015/programme/handouts/Autistic-Culture-07-Oct-1999.pdf
Grace, Ally. (2015). Ten things you reject by embracing neurodiversity. Respectfully Connected (blog), http://respectfullyconnected.com/2015/02/ten-things-you-reject-by-embracing/
Sinclair, Jim. (2005). Autism network international: The development of a community and its culture. Self-published, www.autreat.com/History_of_ANI.html
Singer, Judy. (1998). Odd people in: The birth of community amongst people on the autistic spectrum: A personal exploration of a new social movement based on neurological diversity. Thesis, Faculty of Humanities and Social Science, University of Technology, Sydney, 1998. Republished in “Neurodiversity: The birth of an idea” (2016). www.amazon.com/dp/B01HY0QTEE
Walker, Nick. (2014). Neurodiversity: Some basic terms & definitions. Neurocosmopolitanism (blog), 27 September 2014, http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/
Bascom, J. (2012). Loud hands: Autistic people, speaking. Washington: Autistic Self-Advocacy Network.
Donvan, J. J., & Zucker, C. B. (2017). In a different key: The story of autism. London, UK: Allen Lane.
Feinstein, A. (2011). A history of autism: Conversations with the pioneers. Hoboken, NJ: John Wiley & Sons.
Grandin, T. (1986). Emergence, labeled autistic. Novato, CA: Academic Therapy Publications.
Silberman, S. (2016). Neurotribes: The legacy of autism and how to think smarter about people who think differently. Sydney: Allen & Unwin.
Williams, D. (1992). Nobody nowhere: The extraordinary autobiography of an autistic girl. New York: Jessica Kingsley.