Autism as a Natural Human Variation:
Reflections on the Claims of the Neurodiversity
Movement

Pier Jaarsma and Stellan Welin

Linköping University Post Print

N.B.: When citing this work, cite the original article.

The original publication is available at www.springerlink.com:
Pier Jaarsma and Stellan Welin, Autism as a Natural Human Variation: Reflections on the
Claims of the Neurodiversity Movement, 2012, Health Care Analysis, (20), 1, 20-30.
http://dx.doi.org/10.1007/s10728-011-0169-9
Copyright: Springer Verlag (Germany)
http://www.springerlink.com/
Postprint available at: Linköping University Electronic Press
http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-72172

1

Abstract

Neurodiversity has remained a controversial concept over the last decade. In its

2

broadest sense the concept of neurodiversity regards atypical neurological development as a3

normal human difference. The neurodiversity claim contains at least two different aspects.

4

The first aspect is that autism, among other neurological conditions, is first and foremost a5natural variation. The other aspect is about conferring rights and in particular value to the6neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a7natural variation on par with for example homosexuality. The broad version of the8

neurodiversity claim, covering low-functioning as well as high-functioning autism, is

9

problematic. Only a narrow conception of neurodiversity, referring exclusively to high-10functioning autists, is reasonable. We will discuss the effects of DSM categorization and the11

medical model for high functioning autists. After a discussion of autism as a culture we will

12

analyze various possible strategies for the neurodiversity movement to claim extra resources

13

for autists as members of an underprivileged culture without being labelled disabled or as

14

having a disorder. We will discuss their vulnerable status as a group and what obligation that15

confers on the majority of neurotypicals.

16
17

Keywords

Autism - Disability - DSM-V - Equality - Neurodiversity - Vulnerability

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Introduction

21
22

In this paper we will discuss some issues around autism, in particular the neurodiversity claim

23

proposed by some autists. What we call the neurodiversity claim consists of at least two parts.

24

One is related to the idea that there are indeed neurological (or brain-wiring) differences

25

among the human population. Being autistic is one of them. One aspect of the neurodiversity

26

claim is that autism (or some other neurological condition) is a natural variation among

27

humans. Being neurodiverse or neurotypical (“normal”) are just different ways of existing as

28

humans.

29

The second aspect of the neurodiversity claim is related to rights, non-30

discrimination and other more political issues. The two aspects often go together. There now

31

exists what might be called a neurodiversity movement. The term ‘neurodiversity’ is generally

32

credited to Judy Singer, a sociologist diagnosed with Asperger Syndrome [22, 26]. The

33

neurodiversity movement was developed in the 1990s by online groups of (high-functioning)

34

autistic persons [12, 22]. It is now associated with the struggle for the civil rights of all those35

diagnosed with neurological or neurodevelopmental disorders, such as attention deficit-

36

hyperactivity disorder, bipolar disorder, developmental dyspraxia, dyslexia, epilepsy, and37

Tourette’s syndrome [8]. Neurodiversity has remained a controversial concept over the last38

decade. In this paper, we will limit ourselves to neurodiversity as it relates to autism. We

39choose this because there is a greater chance of clarifying the moral problems surrounding

40

neurodiversity for one particular condition then there is for a set of fairly disparate conditions.

41

One moral issue concerns the usage of terms. ‘Person with autism’ suggests that42

there is a normal person trapped behind the autism. It carries with it the idea that a person is43

somehow separable from autism. But this term is met with opposition from the neurodiversity

44

movement. They claim that autism is inseparable from the person and being autistic

45

influences every single element of who a person is. [29] The autistic autobiographical author

46

Temple Grandin seems to hold this view: “If I could snap my fingers and be nonautistic, I

47

would not. Autism is part of what I am” [11:xviii]. Therefore the neurodiversity movement48

prefers to speak of ‘autistic persons’ or ‘autists’ rather than ‘persons with autism’. Donna

49

Williams, another autistic autobiographical author, seems to hold the opposite view. She

50

refers to her autism poetically as “an invisible prison with replica selves on the outside, each a51

contortion, a distortion of the one you can’t see, who can’t get out” [27:9].

52

We will in many places distinguish between “high-functioning autists” and53“low-functioning autists”. There seems to be a partial consensus on this distinction: if autists

54

have an IQ in the normal range (or above), they usually are said to have high-functioning

55

autism (HFA) [3].

56

Our aim in this paper is to understand the neurodiversity claim – or rather claims

57– and to analyze them and relate them to other discussions. To do this we will first describe

58

autism. Secondly, we will discuss the claim(s) of neurodiversity and we will distinguish59

between a narrow and a broad view on neurodiversity. Thirdly, we will discuss the effects of60

DSM categorization and the medical model for high functioning autists. Fourthly, we will61

discuss autism as a culture. In this last section we will also analyze various possible strategies

62

for the neurodiversity movement to claim extra resources as a group without being labelled63

disabled or as having a disorder. We will discuss their vulnerable status as a group and what64

obligation that confers on the majority of neurotypicals.

65
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68

Autism69

Autism was first identified by Leo Kanner in 1943 as a childhood syndrome characterized by70‘autistic aloneness,’ obsession with routine and profound problems with communication.

71

Asperger’s Syndrome (AS), first described by Hans Asperger in 1944, differs from ‘classic’72

autism in that those diagnosed with Asperger’s do not show evidence of intellectual73

deficiency or language delay [7]. The concept of the autism spectrum disorder (ASD),

74

Asperger's disorder at the mild end to severe autistic disorder at the other end, was developed

75

in the early 1990s by Lorna Wing [28]. The primary diagnostic abnormalities of autism

76

involve selective impairments in social, communicative and imaginative abilities that are77

usually quite severe. About seventy-five percent of diagnosed autists have intellectual78

disabilities, the rest have average to good IQs [18]. Sensory difficulties are also quite common

79

in ASD. These difficulties may be connected to sound and hearing, sight and seeing, touch,80

taste or general sensory dysphoria [16]81Much of the literature in the 1940s speculated that autism was associated in82

particular with emotionally frigid mothers, who became known as “refrigerator mothers” [14].

83

The increasing importance of cognitive science, brain science and then biogenetic science,

84

investigations into the biological and genetic basis for autism, eventually removed the85

association between autism and parenting [7].

86

Numerous psychological, biological and neurological theories have been

87

proposed to explain autism. These theories of autism share the assumption that there is a88

deficit in autists that should be researched, classified, and, ultimately, modified. Therefore,89

the common link among these theories is an assumption that there is something wrong with90

the person with autism [5].

91

In general, in the scientific community, autism is not regarded as a single

92

disease but as a syndrome with multiple nongenetic and genetic causes [20]. Moy, a93

molecular psychiatry researcher, states that the etiology of autism is thought to involve an

94

interaction between genetic susceptibility, mediated by multiple genes, and possible

95

environmental factors, leading to aberrant neurodevelopment [19]. In a recent review article it96

is stated that autism spectrum disorder is highly genetic [17]. The relative risk of a second

97

child having this diagnosis is 20–50 times higher than the population base rate if the first child98

is affected. Heritability estimates from family and twin studies suggest that about 90% of

99variance is attributable to genetic factors, making this disorder the neuropsychiatric disorder

100

most affected by genetic factors.

101

At present Autistic Disorder and Asperger’s Disorder are two separate diagnoses

102

included in the Diagnostic and Statistical Manual of Mental Disorders-IV TR (DSM-IV TR).

103

The latest development at the time of writing this paper is that the work group of DSM-V

104

proposes Asperger’s disorder to be subsumed into an existing disorder: Autistic Disorder

105(Autism Spectrum Disorder) [33].

106

In our opinion, high-functioning autism should neither be regarded as a disorder107

or a disability nor as an undesirable condition per se, but rather as a condition with a108

particular vulnerability. Autism can also have desirable and enabling consequences, both to109

the individual and to society. Dr. Temple Grandin refers to this when she speaks about the110

origin of her own success:

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112

“In some ways, I credit my autism for enabling me to understand cattle. After

113

all, if I hadn’t used the squeeze chute on myself, I might not have wondered how

114

it affected cattle. I have been lucky, because my understanding of animals and115

visual thinking led me to a satisfying career in which my autistic traits don’t

116

impede my progress.” [11:111]

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Neurodiversity

120
121

Judy Singer [22, 26] argued for a politics of “neurodiversity,” asserting that “[t]he122‘neurologically different’ represent a new addition to the familiar political categories of123class/gender/race”. Sparked by this first articulation of neurodiversity the bush fire of124

neurodiversity quickly spread across the internet. As a consequence different conceptions of

125

neurodiversity emerged in the past decade. These can be roughly divided into broad and126

narrow conceptions.

127

In its broadest sense the concept of neurodiversity defines all atypical128

neurological development as a normal human difference that should be tolerated and129

respected in the same way as other human differences [12]. In slightly different ways a

130

number of authors [2, 4, 8] suggest that people with different neurological conditions are just131

different, not handicapped or pathological.

132

One conception, referring only to autism, is suggested by Baker [2]. She states

133

that in the case of autism and other neurological differences, the former is called134

neurodiversity and the latter is neurological disability. Proponents of the neurodiversity

135

movement claim their condition is not something to be cured, but rather a human specificity

136

or difference, with different ways of socializing, communicating and sensing, that may not137

necessarily be disadvantageous and that must be equally respected [22].

138

Brain structure and neurological development figure prominently in some of the139

descriptions of neurodiversity on the internet: “Neurodiversity is the idea that variation in

140

brain development and function should be appreciated and accepted as any other form of141

physical variation.” [30] And: “Neurodiversity is defined as the whole of human mental or

142

psychological neurological structures or behaviors, seen as not necessarily problematic, but as

143

alternate, acceptable forms of human biology.” [31]144

The moral and political aspects of neurodiversity are also emphasized.

145“Neurodiversity, in its broadest usage, is a philosophy of social acceptance and equal

146

opportunity for all individuals regardless of their neurology.”[32] Essentially, from a moral

147

and political point differences in brain structure and neurological functioning are claimed to148

have no more significance than differences in skin colour or sex.

149

As outlined above the neurodiversity claim contains at least two different

150

aspects. One aspect is that autism (or at least high-functioning autism) is not to be treated like151

a disability or a handicap but rather as a natural variation. The other aspect is about conferring152

rights and in particular value to the neurodiversity condition, perhaps again to high-153

functioning autism. This condition is not just natural and not pathological, but also valuable.

154

The political claim of the neurodiversity movement goes beyond just giving rights to autistic

155

persons similar to rights to handicapped people; it also claims for recognition and acceptance.

156

We will start with discussing autism as a natural variation and leave the moral and political157

claims to a later section.

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Natural variation

161
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The first point to be made is obviously that “normal variation” is a concept that can be163

understood both in a statistical sense (how common is it?) but also in an evaluative sense164(how normal is it?). A typical example of the statistical sense is that there is a certain gene

165

variety with a certain frequency in the human gene pool. Such a gene can be connected to166

diseases or to more desirable traits. From an evolutionary point of view such a gene being part167

of the normal (statistical) variation should not just be caused by a mutation (it may of course

168

have started its existence in this way). Its survival in the human gene pool should have some169

evolutionary explanation; basically that it has some beneficial effects. One example is Sickle

170

Cell Anemia, where having one allele of the genes gives enhanced resistance to malaria;

171

having two alleles causes Sickle cell anemia. The gene survives in the human gene pool

172

because having one allele is good for survival and propagation even if two alleles are harmful.

173

If autism is a normal variation in the statistical sense, there should be some evolutionary

174

explanation of its continued existence.

175

If autism is caused by environmental factors during the fetal time, it is not a176

natural variation in this particular sense. It is then caused by something other than a specific177

gene, more like a harm that happened. If it had been true that autism was connected to

178

vaccinations, then autism could not be a natural variation. (If only a part of autism was caused

179

in that way, at least that part could not be a natural variation.) If however autism is caused

180

randomly during the fetal development of the brain, it could still be seen as a natural

181

variation, namely if such random processes are naturally occurring without any clear outside

182

cause. A possibility is also a combination; there may be a combination of genes that makes

183

the brain susceptible to certain random changes etc. All these variants can be part of normal

184

variations.

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Effects of DSM classification

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The DSM classification is a typical example of the so-called ‘medical model’ of interpreting190

behavior. According to this model individuals are disabled because of their deficits and191

difficulties, which are summed up in DSM-IV TR (see e.g. Diagnostic criteria for 299.00

192

Autistic Disorder and Diagnostic criteria for 299.80 Asperger's Disorder). The focus , in the193

medical model, is upon fixing, curing and correcting deficits and difficulties to enable the194

individual to live in normal society [16]. Neurodiversity movement adherents have protested

195

against the medicalisation of the condition now known as Asperger’s Disorder. Sarah Allred

196

suggests that they should take as an example a successful precedent: the gay rights movement

197[1]. The American Psychiatric Association (1973) declared that homosexuality per se was no198

longer a psychiatric disorder. The philosopher Lennart Nordenfelt explains the rationale

199

behind this significant change [21]. Homosexuality was no longer seen as a disorder because

200

it did not regularly cause subjective distress or was associated with general impairment in

201

social effectiveness or functioning. In the new outlook on the general concept of a mental

202

disorder it was argued that the consequences of a condition, and not its etiology, determined

203

whether the condition should be considered as a disorder.

204

An important observation regarding homosexuality is this. In a society with

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strong prejudice of homosexuality the lives of homosexuals will be troubled. They will be

206

afraid to be open about it and try to pass as heterosexuals. Homosexuals will be unhappy and207

will have many psychological and psychiatric problems caused not by their sexual preferences208

but by society. In a homophobic society nearly all homosexuals will appear pathological. The

209

cure for these problems has simply been a wider acceptance of homosexuality. We should210

expect that many autists in a similar way have psychiatric and psychological problems due to211

the “autism-phobic” character of present society. In similarity with homosexuals most of the212

problems for high-functioning autists may be due to social conditions. To say that these213

people have a mental disorder because of the consequences of their condition is in a sense214

blaming the victim. The consequences of their condition are perhaps for a very important part215

the result of society’s reaction to their condition. Nordenfelt wrote that much of the distress of216

homosexuals can be explained in terms of severe circumstances rather than in terms of inner217

constitution [21]. It is our belief that the same, mutatis mutandis, can be said of high-218

functioning autists.

219

To subsume Asperger’s Disorder into Autistic disorder in DSM-V is a wrong

220

way to go. To be put in the same category together with low-functioning autists may be

221regarded by some of the persons with Asperger’s as an even worse stigmatization.

222
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Autism as a culture

225
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Is there a specific autistic culture? Dawn Prince-Hughes, an Asperger Syndrome

227

autobiographical writer, believes there is: “[m]uch like the Deaf community, we autists are

228

building an emergent culture. We individuals, with our cultures of one, are building a culture229

of many” [6:793]. Joyce Davidson notices distinctive autistic styles of communication

230

particularly online, which she calls Wittgensteinian ‘language games’. There is a parallel231

between the ‘language games’ of deaf people and those of autistic people in that both

232

populations have a communication style that is different from the norm [6].

233Davidson calls the autistic culture a ‘minoritized’ culture, referring to234

discrimination and exclusion, comparable to Queer, Black or Deaf cultures. The internet,

235

however, has given autists the means to find a way around social and communicative236

exclusion, “[f]reed from the constraints of NT [neurotypical] timing, NTways of interpreting237

body language, free from the information overwhelm of eye contact, the energy demands of

238

managing body language” [6:801]. Many of those with autism are using the internet to239

connect with similar others, binding them together, somewhat paradoxically, into groups. The

240

new virtual environment is much more autism compatible than the regular social environment,

241

which has become more and more autism incompatible during the last centuries [6].

242Using the internet in a particular way seems to be a solution for some of the243

psychosocial problems high-functioning autists encounter. More communication, mutual

244

support, group bonding, even the creation of an autistic culture, all these have become245

possible for autists because of the autism-compatible features of the internet. The internet,

246

though, should be seen only as a way of facilitating communication, not as constituting a

247

specific culture in itself. The claim that there is a specific autistic culture can be based on

248

autistic persons difference in language style, ways of relating to others, values etc. Above all249

is the common interest that they share, similar to most other cultural or ethnic groups. Typical250

for such groups are that their members want to identify with the group.

251

One of the possible strategies for the neurodiversity movement is to have autists

252(or at least high-functioning autists) recognized as a special group in need of certain “group253

rights” similar to what has been conferred on various minority groups. The core of such254

claims is often that there is something special to be protected, for example a certain culture in

255

risk of being swallowed by the majority culture.

256

They can, like other minority groups, base their claim for special treatment on

257

the pervasive discrimination against them, both historically and also present. The Inuit in

258

Canada, Native Americans in the USA, and Sami population in the Scandinavia are examples

259

of groups that claim special rights. In their case this is based on a common origin and a shared260

history. This is not the case for autistic people, nor do they have a homeland of their own. The

261

claims from the autistic culture are similar to the Deaf culture, which also live dispersed

262

among the majority. But how to determine whether somebody is a member of the autistic263

culture? Is it enough with self identification as autistic or do we need some “objective” way to264characterize them? In the case of Sami people or Inuit there are “objective” ways; each265

member shares a common history and background. Although neither autistic people nor Deaf

266

people have a common origin it seems that there are rather simple behavioral traits that

267

together with self-identification will single out members of such a culture.

268

The autistic culture may benefit from making use of the same philosophical269

foundations to argue for their minority group rights that the philosopher Will Kymlicka

270

described for ethnocultural minority group rights. Group-specific rights for minorities are271

needed to ensure that all citizens are treated with genuine equality. On this view, “the272

accommodation of differences is the essence of true equality” [15:108], and group-specific273

rights are needed to accommodate our differences.

274

When we apply Kymlicka’s thoughts to the autistic culture, we can say that the275

autistic culture is unfairly disadvantaged in the cultural market-place. Political recognition276

and support can rectify this disadvantage. The viability of the autistic culture may be

277

undermined by economic and political decisions made by the majority of neurotypicals. The

278

members of the majority culture of neurotypicals do not face this problem. Given the279

importance of cultural membership, this is a significant inequality which, if not addressed,

280

becomes a serious injustice.

281

What if the environment of autists is not yet autism-compatible? The

282

environment would be autism-compatible when the society they live in would have adopted283

the so-called ‘social model of disability’. This model suggests that the society is equally284

responsible for enabling individuals with disabilities to live and exist within the society as

285

disabled people. According to this model we should not want to change the individual so286much as accommodate that person and support him or her in ways that enable them to live

287

positively [16]. While most cultures, including the Deaf culture, usually are able to manage

288

on their own, this is not quite clear for the autistic culture. Or rather, one needs a restrictive

289

view of the autistic culture, only including high-functioning autists, to get a potentially290

independent culture. So, first let us discuss autistic culture from the broad conception, which291

we deem problematic, and later turn to the more plausible narrow conception.

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Autistic vulnerability

295
296

Considering the broad conception of neurodiversity, a paradox becomes clear. If

297

neurodiversity is accepted by society as a special culture, the autists that need care [13] may

298

face a hard time getting it, because their state of being will be regarded as just a natural299

variation. The high-functioning autists that do not need care live happily in the knowledge

300

that they are freed from the burden of having a deficit and may have a better life with non

301

interference. But it may not be so good for low-functioning autists or even high-functioning302

autists that do need care. Acceptance does not ‘cure’ difficulties with social relationships,

303

social communication, rigidity and sensory issues. On the other hand if neurodiversity is not

304

accepted by society as a separate culture, high-functioning autists will still suffer the stigma of305

having a deficit, even if some of them do not need special care and support.

306

Two strategies can be used to get around this paradox. The first strategy is to307

recognize the vulnerability in general of most autists. The word “vulnerability” is derived

308

from the Latin verb vulnerare, “to wound.” To be vulnerable means to face a significant

309

probability of incurring an identifiable harm while substantially lacking ability and/or means

310

to protect oneself [25]. Autists are vulnerable in this sense. The concept of vulnerability is

311

essential to bioethics. The vulnerability of other human beings is the source of our special

312

responsibilities to them [10].

313

There are arguments against the labeling and categorization of vulnerable

314

individuals and populations [24]. Labeling individuals as ‘vulnerable’ risks viewing

315

vulnerable individuals as ‘others’ worthy of pity, a view rarely appreciated. The essence of316

these arguments is that the label of ‘vulnerability’ leads to inequality. These arguments are not317

plausible, as we will try to show. Vulnerability is something we all, autists and non-autists

318

alike, experience in our lives. We all belong to vulnerable populations during some time of319

our lives. Vulnerability as a concept does not separate a particular group of people from the320

rest of mankind, unlike the concepts of disability and disorder. Therefore, vulnerability

321

implies equality rather than inequality.

322

However, it does remain clear that some people are more vulnerable than other323

people, e.g. infants, the elderly and of course, by their very nature, autists. These particularly

324

vulnerable people may need care and support. Let us briefly stay inside the broad conception

325

of neurodiversity including all autists. Because vulnerabilities are grounds for special

326

responsibilities, losing the diagnosis of ‘disorder’ by replacing it with a characterization based327

on ‘vulnerability’ should at first sight not have any detrimental effect on the protection of328

people with autism. The discovery and assessment of autistic vulnerabilities can build upon329

the existing bodies of knowledge about the natural causes of autism and about the330

consequences for autists of neurotypicals’ actions, choices and social conventions [11].

331

However, applied to the broad conception of neurodiversity this strategy is problematic, for332

the pragmatic reason of the enormous amount of resistance that needs to be overcome to stop

333

speaking about ‘disorder’ in the case of high-functioning autists as well as low-functioning334

autists.

335

A better strategy to tackle the difficulties that accompany the acceptance of336

neurodiversity by society is to adhere only to the narrow version of the neurodiversity claim.

337

The reason for this preferred adherence is that the broad version of the neurodiversity claim is338

problematic. It is clear that people with low-functioning autism are extremely vulnerable and339

their condition justifies the qualification “disability”. However, the degree of social

340

construction of their disability has to be taken into account. Members of the group of high-341

functioning autists most often can have rather independent lives in the right kind of342

environment. For what are now disabling traits of these people, may, in a differently

343

constructed social environment, become “neutral” characteristics [23]. Wendy Lawson,344

autism advocate and scholar, formulates it like this: “[…] only as a society gains

345

understanding of an individual and their cognitive difference (‘diff-ability’) and also use the346

understanding to inform appropriate interventions, will that individual’s ‘disability’ be less347

disabling. ” [16: 53] So, disability in autism is always, at least partially, socially constructed348

disability.

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351

Conclusion

352
353

Some autism inside the narrow conception of neurodiversity can be seen as a natural variation354

on par with for example homosexuality. (Lower-functioning autism is also part of natural355

variation but may rightly be viewed as a disability.) Just as homosexuals in a homo-phobic356

society, the conditions in which autists have to live in an autism-incompatible or even autism-357

phobic society are unreasonable. Therefore, it is not fair to place the locus of the problem

358

solely on the autistic individual. What also is needed is a discourse about the detrimental359

effects of an autism-incompatible and autism-phobic society on the well-being of autists.

360

Therefore, in the case of high-functioning autists, society should not stigmatize these persons361

as being disabled, or as having a disorder or use some other deficit-based language to refer to362these people. It is much less morally problematic to refer to the particular vulnerability of363

these autists. Also, group-specific rights for autists are needed to ensure that the autistic364

culture is treated with genuine equality.

365

It is our conclusion that it is wrong to subsume all persons with Asperger’s

366

Syndrome and high-functioning autists into the wide diagnostic category of Autistic Disorder367(Autism Spectrum Disorder), as the work group of the American Psychiatric Association for368

the Diagnostic and Statistical Manual of Mental Disorders-V (DSM-V) proposes. Some of369

these persons are not benefited with such a psychiatric defect-based diagnosis. In fact, some370of them are being harmed by it, because of the disrespect the diagnosis displays for their371

natural way of being, which is of course contradictory to the Hippocratic principle of ‘primum372

non nocere’. However, we think that it is still reasonable to include other categories of autism

373

in the psychiatric diagnostics. The narrow conception of the neurodiversity claim should be374

accepted but the broader claim should not.

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