Red flags - 1

Final draft of chapter:

Giles, D.C. (2015). Red flags: The social construction of a symptom. In M. O’Reilly & J.N. Lester (Eds). The Palgrave handbook of child mental health: Discourse and conversation studies. Basingstoke: Palgrave Macmillan, pp. 217-232.

CHAPTER XXX: RED FLAGS: THE SOCIAL CONSTRUCTION OF A SYMPTOM

David C. Giles (University of Winchester, UK)

Chapter contents

1. Introduction

2. The proliferation of autism symptoms

3. How to identify autism symptoms

4. How to build a symptom: Toe walking

5. Proceeding from symptom to treatment: Sensory processing and blanket

wrapping

6. Implications for clinical practice

7. Watching the edifice being constructed

Introduction

How does a behaviour become a symptom? A symptom is only meaningful in its

context, as a kind of puzzle for an officially recognised expert to solve. While physical

symptoms – rashes, sore throats, runny noses – are relatively easy for a medical practitioner

to piece together to form a coherent, familiar picture, behavioural symptoms pose a much

greater challenge. A swab cannot be taken that will confirm the doctor’s diagnosis: as Szasz

(1971:34) puts it, ‘no-one knows for certain who is, or is not, mentally ill.’ The ambiguity of

‘mental illness’ is a fabulous breeding ground for symptoms, jostling for priority, yearning

for interpretation. Compared to the neatly-interlocking puzzle pieces available for

constructing a common physical malady, the psychiatrist is confronted with a plethora of

Red flags - 2

different shapes, most refusing to fit together, and probably deriving from several different

boxes.

Now bring psychiatric diagnosis out into the open, plaster it all over the Internet, and

see what happens: the symptoms (never mind the syndromes) grow and multiply; behavioural

quirks and oddities are recognised by more and more people as symptoms of one or other

condition. And when the people spotting those symptoms happen to be parents of the children

demonstrating those behavioural quirks and oddities, and are quite reasonably seeking pieces

to fill in the missing gaps in their own familial jigsaw puzzles, the context of interpretation

becomes stretched ever wider. In the digital age, we are all analysts, performing our own

interpretations, and we find symptoms everywhere.

Nowhere has this process become more elaborated than in the field of autism. In this

chapter I use the proliferation of autism symptoms (and their accompanying ‘treatments’) as a

case study of how behaviours become socially constructed as pathological – as mental illness

phenomena, or specifically, symptoms. I will do this by applying a blended analysis of

discourse circulating through both the contemporary World Wide Web and through the vast

academic literature on autism.

The proliferation of autism symptoms

It has been frequently noted that there is a contemporary ‘scare’ about autism that is

aligned to increased diagnosis of the condition as well as the emergence of a popular

discourse around autism (Hacking, 2009). Autism is sometimes referred to as a modern

‘epidemic’ (Eyal et al, 2010), and in the most recent edition of the American Psychiatric

Association’s Diagnostic and Statistical Manual (DSM5, 2013) the scope of the condition

has been stretched further by the absorption of related disorders into a broad ‘autism

spectrum’ that encompasses conditions previously diagnosed as discrete disorders:

Red flags - 3

Asperger’s Disorder, Childhood Disintegrative Disorder and the ragbag category PDD-NOS

(Pervasive Developmental Disorder – Not Otherwise Specified). From 2013, individuals are

able only to receive a formal psychiatric diagnosis of Autism Spectrum Disorder (ASD).

At the same time, there is a healthy scepticism about the remarkable increase in

autism diagnoses in recent years and the – often bizarre – psychiatric explanations offered to

account for it1. Greater awareness and improved detection is the most common, although as

Eyal et al (2010) have shown, detection rates have more to do with diagnostic criteria than

with ‘awareness’, and the salience of symptoms varies markedly across cultures: for example,

Daley and Sigman (2002) found that Indian professionals were less likely to consider

language delay as a central characteristic. Nadesan (2005) has suggested that autism be

considered what Ian Hacking (1998) calls a ‘transient mental illness’ – one that is

intrinsically linked to a certain time and place and can just as easily vanish completely.

Hysteria served as a useful construct for Freud and his contemporaries to explain mental

distress in their middle-class female clients, but the diagnosis failed to make the second

edition of the DSM. Shellshock ceased to be diagnosed when combat-related disturbance was

found well away from the trenches of the First World War. Neither Multiple Personality

Disorder nor Asperger’s Disorder lasted longer than a single edition as DSM categories.

Along the same lines Sami Timimi and colleagues (Timimi & Leo, 2009; Timimi,

Gardner &McCabe, 2011) have argued that autism and ADHD – and in particular the

medication of such conditions – are one of contemporary society’s ways of producing and

then controlling unruly boys. Indeed there is plenty of material in the diagnostic tools used by

clinicians that suggest that the main beneficiaries of autism diagnoses are not parents or

children but teachers and other educational practitioners who are charged with supervising 1 One of the stranger stories to have done the rounds concerns the claim that areas with clusters of employees in the IT industry, such as California’s ‘Silicon Valley’, have high levels of children diagnosed with autism (see http://news.bbc.co.uk/1/hi/health/2192611.stm). However, no research has thus far been published to substantiate the (anecdotal) claims, which are merely based on the belief that autism is genetically inherited (and the equally unsubstantiated claim that computer experts are ‘more autistic’ than everyone else!)

Red flags - 4

mealtimes, or whose increasingly academic curricula require preschool children to gather and

behave at regular intervals for practices like circle time. Among the ‘target behaviours’ listed

for preschoolers receiving therapy for autism are ‘sitting quietly’, ‘walking in line’, ‘waiting

quietly’ and ‘participating in circle games’ (Scott & Baldwin, 2005). In our ultra-competitive

and materialistic world, diagnosing autism is a convenient means of producing obedient and

compliant youngsters who can attend educational institutions full-time while their parents

contribute to the economic growth of the nation.

As the diagnostic criteria for ‘autism spectrum disorder’ become ever broader, the

opportunity for additional signs and symptoms of the condition increases, and the diversity of

research findings, theories and explanations for different manifestations of autism (spectrum

disorder) has led to an expanding set of associated behaviours that can, or may, be a potential

source of concern for parents. Inevitably, the more symptoms, the worse the prognosis.

The ever-increasing plethora of symptoms is exacerbated by the extraordinary range

of autism resources available on the World Wide Web. Most of these are aimed squarely at

the parents of children with autism, or parents who are concerned, or even hopeful, that their

children may have autism (I say ‘hopeful’ not in order to trivialise the parents concerned, but

because there is a strong community of autism advocates who prefer to construct autism as a

positive attribute). Some websites are run by the autism community itself (e.g. the hugely

successful Wrong Planet, a US-based site with over 60,000 members and its own

merchandise including T-shirts, bags and hats), or by charitable bodies engaged in raising

autism awareness; others have been set up by health professionals with the aim of educating

the public, or link to more general health sites.

In this chapter I pull examples of online data fairly indiscriminately from the above

sources. I am not claiming that these examples are typical, or representative, of any specific

category of website, but simply to present them as illustrative of the kind of discourse

Red flags - 5

circulating online that parents and other interested parties may stumble across, or actively

seek out, to inform their understanding of autism and its status as a medical disorder.

I refer to my analytic approach as ‘blended’ in the sense that it draws from the

genealogical approach to discourse (identifying discourse as a cultural manifestation of

underlying ideology, power structures, and so on) as well as the more systematic approach of

discursive psychology – the microanalytic process of breaking down texts into analytic units,

identifying recurrent patterns, with the emphasis more specifically on the way in which

language is used as an interactional tool.

Kendall and Wickham (1999) outline five steps for conducting Foucauldian discourse

analysis which I have broadly used in this chapter. First, a discourse is identified as ‘a corpus

of statements whose organisation is regular and systematic’: here, symptom talk (with

specific reference to autism) would seem to fit the bill. The remaining four steps concern the

identification of various sets of rules, governing: 1) the production of statements (here, when

symptoms are added to existing lists of diagnostic indicators); 2) how these limit what can be

said (here, about the behaviours that are said to constitute symptoms); 3) how they create

spaces for new statements (by allowing further symptoms to be added to the list); and 4)

practice as simultaneously material and discursive (the symptoms are subsequently used in

order to label behaviour as indicative of autism, perhaps – at some later point – in formal

diagnostic practices).

A key organising principle for the whole is Hacking’s (1986, 1995) work on ‘making

up persons’ and the ‘looping effect of human kinds’, which has influenced much of my

previous research on the use of categories in online communication around mental health

(Giles, 2006; Giles & Newbold, 2011, 2013).

How to identify autism symptoms

Red flags - 6

The term in use throughout the autism community for alerting parents to the presence

of a possible autistic symptom is ‘red flag’. A behaviour is said to be a red flag for autism if it

functions as a potential sign or symptom of the condition. An example of this usage can be

found on the website of Autism Speaks (www.autismspeaks.org), a high-profile US charity

that describes itself as a ‘the world’s leading science and advocacy organisation’. Their drop-

down menu offers a page for ‘symptoms’ as well as ‘signs’, restricting the former to broad

diagnostic indicators such as ‘social communication deficits’, and the latter to the specific

behaviours. On the ‘signs’ page, visitors are told: “The following "red flags" may indicate

your child is at risk for an autism spectrum disorder. If your child exhibits any of the

following, please don’t delay in asking your pediatrician or family doctor for an evaluation”,

followed by a list that includes “No babbling by 12 months”, “No words by 16 months”, and

several rather more ambiguous behaviours.

The term ‘red flag’ in this context probably derives from a paper by Filipek et al

(1999) that features a list (Table III, on page 452) entitled “Parental Concerns that are RED

FLAGS for Autism”, including such things as ‘Appears deaf at times’, ‘Gets things for

himself’, ‘Tunes us out’, ‘Does things "early"’, ‘Lines things up’ and ‘Toe walks’. Although

these descriptions are highly simplistic or colloquial, and at best entirely subjective, it must

be noted that this paper was published in a highly-respected peer-review scientific publication

(The Journal of Autism and Developmental Disorders), and was authored by no fewer than

eighteen medical researchers affiliated to various American universities. Not surprisingly,

checklists of ‘red flags for autism’ in the many resources for parents found online are taken

from this list. The list on the Autism Speaks website seems to be reproduced from one section

of the Filipek et al. table, which was originally published under the heading “Absolute

indications for immediate further evaluation” [authors’ italics].

Red flags - 7

Elsewhere among autism-related online resources, and in broader media coverage of

autism, there are more alarming manifestations of red flag discourse. A particularly

unpleasant one can be found on the website of the American CBS news channel. Under the

heading “Autism: 9 Warning Signs Every Parent Should Know” the visitor is presented with

a clearly photoshopped close-up of a sad-looking baby with deep blue marble-like eyes,

followed by the text: “Parents fear autism, and rightly so. The mysterious brain disorder

devastates a child's ability to speak and interact with others… Is your child at risk for autism?

Here are nine red flags to watch for” followed by the endorsement of a medical expert, and

nine linked pages that stretch Filipek et al’s list of behaviours, and other, newer additions to

the standard list, into even more open-ended descriptions. For example, one page is headed

‘Arm Flapping’, with the text: “Arm flapping is a well-documented red flag for autism. But

other strange body movements and postures can also suggest trouble ahead. Does your child

repeatedly stiffen his/her arms or legs? Keep twisting his/her wrists?”

Is ‘arm flapping’ really ‘well-documented’ as an autism red flag? The Filipek et al

(1999) list does include ‘odd movement patterns’, which is surely too ambiguous from which

to infer ‘arm flapping’. The DSM-IV criteria for ‘Autism Disorder’ include, as one of several

possible symptoms, “stereotyped and repetitive motor mannerisms (e.g., hand or finger

flapping or twisting, or complex whole-body movements)”, which seems to exclude ‘arm

flapping’ as such, not to mention wrist twisting, arm and leg stiffening. More ambiguously

still, the DSM5 criteria for Autism Spectrum Disorder simply offers: “stereotyped or

repetitive motor movements”, which is further qualified by the caveat that the list of

diagnostic criteria is merely ‘illustrative’. Therefore, stereotyped and repetitive motor

movements – of any kind – are simply one instance of the plethora of possible “repetitive

patterns of behaviour” possibly indicative of autism.

Red flags - 8

Plumbing similar depths of ambiguity, another page is headed ‘No name recognition’,

accompanied by a picture of a child covering his ears, warning that: “By six months of age, a

child should be quick to look up when someone calls his/her name. Does your child fail to

look up when called - or look up only some of the time? That's a red flag.” Such a claim is

not made even in the literature that advocates this test of autism detection. Nadig et al (2007),

the most frequently-cited source, found that at six months only a ‘nonsignificant trend’ was

observable between consistent own-name response and clinical outcome at 24 months; only

from observations at 12 months could this pattern be supported by statistical analysis2.

How to build a symptom: Toe walking

In this section, I continue the analysis of symptom construction by exploring the

discourse around a second behaviour: toe walking. Toe walking refers to the observed

behaviour of a child moving around the environment with the feet bent at the toes (more

commonly referred to as ‘walking on tiptoes’). Toe walking is the kind of behavioural

childhood quirk that one might initially expect to elicit delighted giggles from doting parents,

evolving gradually into concern for the physical development of the feet. But the autism

community paints a bleaker picture: toe walking is another Red Flag. It appears in Filipek et

al’s (1999) original list, and has therefore been reproduced countless times on autism

websites as something for parents to beware.

In the process of constructing an apparently quirky behaviour as a ‘red flag’ for

autism behaviour becomes framed, not as a charming developmental eccentricity but as

something almost akin to demonic possession. One YouTube video3 shows an 18 month-old

2 I am only citing this latter statistic in order to demonstrate the fallacy of CBS’s claim. Further inspection of the Nadig et al (2007) data reveals that only one child in the sample actually failed the ‘own name’ test at both six and 12 month intervals, suggesting that either this is a statistical artefact (i.e. not corrected for chance), or there is a developmental trajectory to own name recognition whereby children with autism progress typically until somewhere between 6 and 12 months and then, mysteriously, ‘lose’ this capacity. Like most autism symptoms, own name response is hopelessly under-theorised in the literature, therefore prone to all kinds of spurious interpretation.3 http://www.youtube.com/watch?v=LWPEt6La8Gs

Red flags - 9

child exploring his parents’ new apartment and apparently exhibiting certain ‘red flags’: the

accompanying text reads ‘I didn't know it then, but looking back I can see the signs of autism

beginning to emerge’. There are countless others which exhibit children spinning in circles,

flapping hands, ‘stimming’ (unusual or repetitive behaviours that are believed to be

stimulating) and generally failing or refusing to respond to their parents’ demands. These

often invite comments that amount to requests for expert advice. Following a similar

YouTube video4 someone has posted:

I would love to send you some videos and see what you think [of] my 18 month old son Parker. I am

seeking speech and OT but am worried he won’t get the proper care or dx [diagnosis].

Childhood toe walking is raised as a concern in a number of online discussion threads

on general parenting websites. In early 2012 a member of the large and influential UK

parenting site mumsnet.co.uk posted the following query on the ‘Children’s Health’

subforum5:

My DS [mumsnet acronym for ‘darling son’] has been walking on his toes for 2-3

months on and off. Although I noticed it, didn't really make a big deal about it, just thought it

was a habit, and he would grow out of it. Anyway his teacher, has raised a concern, and has

suggested we get him checked as he is also falling over quite abit at school. Has anyone had

any experience of this, or know anyone like this?

It did not take long for the word ‘autism’ to follow. The first respondent suggested

dyspraxia; the second mentioned that her daughter toe-walked and had “hypomobility and

autism”. Three responses later, a parent recommended that “it's worth getting checked out as

it can be due to other underlying conditions such as autism”. Another said that her son has

Aspergers and toe-walks and that she calls it “the aspie bounce”. The original poster replies

that she doesn’t think that her son has autism, but after a number of discussions about dance

4 http://www.youtube.com/watch?v=Cq7Tq7qMWds5 Full thread can be found at http://www.mumsnet.com/Talk/childrens_health/a1383781-4yr-old-walking-on-his-toes

Red flags - 10

classes and physiotherapy a new discussant announces that “toe walking can be a symptom of

ASD”. Another replies that it is not necessarily a symptom, just “something that a lot of

children with ASD do, mainly due to sensory issues”. The previous poster responds by

saying: “toe walking is a red flag for autism”. There is some resistance to this interpretation,

which is sensibly resolved by the original poster reassuring other members that “It's very

unlikely [my son] has autism, as he is showing no other signs.”

My aim in this analysis is not to claim that there are direct and measurable ‘effects’ of

symptom talk of this kind, but to demonstrate how it permeates everyday interaction in a way

that might raise unnecessary alarm about ordinary childhood behaviour. Fortunately, the

original poster in this discussion had already ruled out (or never had reason to consider)

autism as an explanation for her son’s general behaviour; a more sensitive mother, or a

mother of a child with delayed speech or poor social skills who had suddenly started toe-

walking, could have reacted quite differently.

A more worrying thread appears on parenting website thebump.com6, which opens

similarly to the mumsnet one:

Okay, so daughter is 2.5 and has been toe walking for a while now. Dr is not concerned at all. I can't

help worrying though that something isn't right. There has been a few instances where she will freak out about

certain things..[goes on to list panic reactions to various stimuli/situations]

Although one or two responses suggest that it is a typical developmental phase and

cite examples of people (including themselves) who toe-walked without anything other than

physical discomfort, a later member sounds a note of caution:

By 2.5 toe walking is a developmental concern - it could well be nothing, just a preference, but by that

age it should be evaluated by a knowledgeable professional. I would get a second opinion.

This is followed by a post that ratchets up the discussion to the autism scare level,

suggesting an explanatory link with (contested) theories about sensory processing deficits in 6 thebump.com, a spin-off of wedding planning site theknot.com, is aimed at parents of babies and toddlers; the thread under discussion here can be viewed at http://forums.thebump.com/discussion/12328112/walking-on-tip-toes-at-2-5-years-old-and

Red flags - 11

autism and their associated ‘treatments’ (I explore the ‘weighted vests’ option in the next

section of the chapter):

This. Toe walking is a red flag for neurological differences. It might be nothing, especially since she's

so young. But it's a red flag for ASD and sensory issues aside from the physical and gross motor complications

it can cause. Sometimes people toe walk because it causes a significant joint compression in the large knuckles

of the feet which can be calming to those with sensory issues. Sort of like weighted vests or Temple Grandon's

squeeze machine.

There follows a succession of posts that reiterate the call for the original poster to

seek additional professional advice, criticising her paediatrician for ‘playing down’ her

concerns.

I would not dismiss toe walking. It can be indicative of non neuro-typical development. If your

pediatrician down plays your concerns I would look for a new pedi and schedule a evaluation through early

intervention. You do not need the pediatricians permission to have your child evaluated for delays and it sounds

like you have legitimate concerns.

Advice to seek professional advice is typical of discussion threads in online mental

health communities (Giles & Newbold, 2011, 2013) and may act as a form of ‘stake

inoculation’ (Potter, 1996) against making judgements that could turn out to be false, or

merely contested. One later discussant even throws in a further disclaimer (“I always feel as

though I am being an alarmist in these topics. I hate that. But honestly, I agree with [the

earlier post recommending a new paediatrician]”. On a general parenting website like the

bump it has the potential to alarm concerned members and undermine their confidence in

their current practitioners (note that the posts are not applying critical judgement to medical

discourse per se but to the judgement of a specific professional suspected of making a false

negative error).

The same ‘stake inoculation’ is practised by professionals themselves when

addressing the toe walking issue online. On the US parenting site sixtysecondparent.com a

paediatric therapist contributes a blog post entitled ‘Toe-walking: what to do about children

Red flags - 12

who consistently walk on tiptoes’. It starts by saying “children walk on their toes for various

different reasons” although the eye is drawn to a sentence in bold, two paragraphs below,

which states “A very large number of children with autism spectrum disorder will persistently

walk on their toes”, the author going on to say that she always carries out a general

assessment in cases of toe-walking that includes questions about language and social

interaction.

It transpires that toe walking is not only seen as a ‘red flag’ for autism. On another US

parenting site, babycenter.com, a member begins a thread by saying:

My 2 year old has SPD [sensory processing disorder7] of the seeking variety. For the last month he has

been walking on his toes. Two of our six specialists believe he is at risk for mild ASD. Does anybody know if

this new toe-walking is related to ASD because it's a sensory-seeking behavior and kids with ASD often have

sensory processing disorders as well?

The first response to this post begins: “As far as I understand it, toe walking, if a

physical cause has been excluded, is a red flag for SPD”. Subsequent responses offer further

examples of toe-walking children with a variety of psychiatrically-recognised and

unrecognised diagnoses. There is not room in this chapter to explore the various issues

relating to the detection and diagnosis of SPD as such, but this example serves to illustrate

how the ‘red flag’ discourse routinely applied to autism has begun to mutate and permeate

talk around other conditions in their associated communities.

What scientific evidence is there for the status of toe walking as a symptom, or sign,

of autism? As one might imagine, the literature on this topic is not vast, and the autism link

7 Sensory Processing Disorder (SPD) warrants a separate analysis of its own. In brief, it is a condition recognised largely within the field of occupational therapy that is said to arise from defective neurological ‘integration’ of sensory stimuli (typically clothing fabric, or food textures). SPD has failed as yet to acquire any psychiatric credibility and does not have an entry in either DSM5 or the World Health Organisation’s Classification of Diseases (ICD-10). Although there is little scientific evidence in the literature for the use of sensory processing techniques in treating autism (Sniezyk & Zane, 2014), this has not prevented it from being a cornerstone of therapeutic practice in some fields: indeed, one study found that 99 per cent of US occupational therapists considered themselves to have a ‘sensory-integration’ orientation (Watling et al, 1999). Clearly, the SPD community is not going to give up without a fight. The website www.sensory-processing-disorder.com, in a revolutionary-style manifesto on its homepage, proclaims: “[SPD] is a REAL diagnosis and the time will come when we prove it scientifically to the medical profession.”

Red flags - 13

seems to be taken for granted by most authors, without them necessarily being able to

account for it in neurological terms, typically just reporting its association with ‘language

disorders’. What actually consititutes toe walking is hard to pin down because the vast

majority of research relies on parents’ anecdotal evidence that their child toe walked ‘some of

the time’. Despite referring to toe walking as ‘an equinus gait’ (Barrow, Jaworski & Accardo,

2011: 619), these and other authors do not register abnormalities in their samples’ walking or

standing, apart from a minority exhibiting ‘tight heel cords’. Overall, it seems that toe

walking is a clinical matter largely because it has been observed by parents.

The prevalence of toe walking in autism is a source of considerable inconsistency:

one older study estimated it at 62.9% (Accardo et al, 1982), while a more recent one puts it at

20.6% (Shattuck, 2006), the latter author explaining the decline as being masked by the

widened diagnostic criteria for autism. Barrow et al (2011) use the same argument to explain

differing prevalence among subsamples of children with autism (20.1%) and Asperger

syndrome (10%). They account for this discrepancy in terms of language disorder, Asperger

syndrome being less likely to be characterised by speech delay in early childhood. The

incidence in toe walking in their overall sample of children is recorded as 12.1%, though this

figure is not broken down into ASD and non-ASD subsamples, and since about a third of the

sample had an ASD diagnosis, it is hard to draw from the data a normative prevalence of toe

walking. Nevertheless, one thing that can be confidently stated is that it is less prevalent in

Asperger Syndrome than in the general population.8

The relationship between language and toe walking is a strange one, not least because

it takes us even further away from the sensory processing argument (not a compelling theory,

but at least logically consistent). However researchers fail conspicuously to address the issue

of why disorders in speaking or comprehension should manifest themselves in the behaviour

8 The authors refer to children with ASD and Asperger syndrome as discrete subsamples, although of course the latter is now included under ASD (no information is given about the diagnostic criteria applied in the particular clinic that these children visited).

Red flags - 14

of toe walking. Despite explaining their findings as a matter of language, Barrow et al (2011:

620) then go on to suggest that it could result from a ‘tonic labyrinthine reflex’ arising from

autistic infants’ tendency to ‘arch when cuddled’, a reaction caused by their allegedly innate

aversion to affection. This is wildly speculative (and many authors vehemently dispute the

claim that children with autism shrink from affection), but at least has some logical

consistency. The authors claim, however, that it would be extremely difficult to provide

supporting evidence, since it would ‘require identifying subtle neuromotor patterns consistent

with this reflex pattern’ (ibid). Nevertheless, they conclude by recommending that all toe

walking children be ‘screened for language delay and autism spectrum disorders’.

Proceeding from symptom to treatment: Sensory processing and blanket wrapping

Nothing powers a symptom like the first-hand account of a famous individual, and

Temple Grandin is probably the most famous single person with autism (unless we count

Einstein, whose reportedly late onset of speech has led him to be adopted as an honorary

‘aspie’). Grandin (1992) is the source of a popular therapy for autism known as ‘deep touch

pressure’. This is rooted in the notorious experiments of Harlow and Zimmerman (1959), in

which baby monkeys were presented with a cloth-covered ‘surrogate’ mother and spent more

time clinging to it than to a wire surrogate with a feeding device attached. Harlow claimed

this as evidence that infants of all types value touch, providing security and comfort, over

food.

One might expect a child displaying a ‘tonic labyrinthine reflex’ through aversion to

cuddling to be the last to be seeking out the comforting touch of a parent, and yet Grandin

(1992) claims that in autism, tactile stimulation is even more highly valued than in the

general population, since the child often seeks out ‘pressure’ experiences, such as wrapping

itself in blankets or bandages. This is, she argues, an attempt to cope with ‘sensory processing

Red flags - 15

deficits’ resulting from neurological abnormalities in the cerebellum region of the brain. In

the same paper, the author describes the development, and single case trial with herself as

subject, of a ‘squeeze machine’ – a padded device that allows the child to experience five

minutes of ‘deep touch pressure’ that (based on anecdotal observation) results in ‘a readily

detectable calming effect’. She does qualify her findings by admitting that the squeeze

machine may be of little use with some autistic children, since autism is by its nature a

‘heterogeneous’ disorder (somehow embracing aversion to cuddling at the same time as

seeking out a hug).

Grandin’s influence within the autism industry has inspired a host of other ‘calming’

instruments to be devised for use in occupational therapy in particular. A British company

called weight-2-Go Blankets (weight2goblankets.co.uk) offers a variety of weighted blankets

that function as bedtime quilts, as well as shoulder wraps, and ‘lap pads’ that are claimed to

reduce hyperactivity and keep children still (presumably at those important moments like

circle time and lunch). The efficacy of their product range is outlined by reference to what

they call ‘sensory integration dysfunction’, which incorporates both over- and under-

sensitivity to sound, colour, touch or movement, ‘unusually high or low activity levels’ and a

host of other typical ASD symptoms and associated behaviours. It is hard to see how the

weighted blankets, wraps and pads could be helpful for a child with oversensitive reactions to

touch, or unusually low activity levels, though, as Grandin (1992) points out, deep touch

pressure is not a solution for all children on the spectrum.

It would be unfair to criticise a commercial website for overselling its produce, but it

is notable that, apart from a list of ‘testimonials’, the manufacturers are unable to provide any

scientific literature that might constitute convincing evidence for the efficacy of their blankets

(even in their ‘FAQ’ section; perhaps ‘how do you know they work?’ is not a question on

their customers’ lips). A US company, Mosaic Weighted Blankets

Red flags - 16

(mosaicweightedblankets.com), with a similar product range, tries a little harder, by at least

providing some neurochemical claims for their use with autism: the products stimulate the

production of serotonin (that produces the calming effect) and melotonin (that helps children

sleep, said to be a common problem in autism). The manufacturers’ claims stretch far beyond

autism and embrace a long list of psychiatric and sleep disorders; but, despite endorsements

from occupational therapists, still fail to cite any studies that support their effectiveness.

As Michael Billig (1999) has argued, in the analysis of rhetoric one must pay as much

attention to what is left unsaid, and one would imagine that businesses trumpeting the

endorsements of practitioners and the activity of specific neurochemicals would be only too

eager to present scientific citations to back up their claims. Alas we are still awaiting the first

conclusive controlled study that successfully demonstrates the efficacy of deep touch

pressure therapy on any meaningful behaviour in autism. Most supportive studies are poorly

designed (typically, failing to include a control group or condition), conflate statistics, or are

confined to a single case study (Stephenson & Carter, 2008).

When deep touch pressure studies are well-designed, they are generally unable to find

any significant decrease in the target behaviour that can be attributed to the pressure devices

themselves, such as the recent study by Watkins and Sparling (2014) that compared

behaviours while children were wearing ‘snug vests’ (at various levels of inflation) with

those before and after the vests were attached. Even studies that have demonstrated some

marginal benefits of weighted vests and similar devices are able to attribute those findings to

more general aspects of therapy, such as increased attention and decreased demands (on the

child) (e.g. Doughty & Doughty, 2008).

Can we conclude from the research that weighted vests, blankets, and other deep

touch pressure appliances do not work? It all depends what constitutes effectiveness. Some of

the authors of otherwise unsuccessful studies claim that the children began to ask to wear the

Red flags - 17

vests, and that they were able to act as ‘reinforcers’ (Doughty & Doughty, 2008). A

discussant on the autism.org.uk forum says: “[my son’s] got a blanket now and loves it…it

doesnt always help but its another thing to help. anything that helps is a good thing”. But

faith alone cannot guarantee effectiveness, and there have been at least two cases in non-

clinical settings where children with autism have been suffocated when wrapped in blankets.

One concerned a Pentecostal ‘storefront’ church in a ritual intended to drive out the evil

spirits responsible for the child’s autism9; the other in a Canadian school specialising in

learning disability where occupational therapists had demonstrated the technique

previously.10

Implications for clinical practice

I hope it is quite clear from what I have said up to now that clinical practitioners

should not deal with problematic behaviour by wrapping children in blankets. If clinical

practice is intended to be evidence-based, the evidence for sensory processing is poor; the

evidence for considering ‘toe walking’ (however this is defined, and this is a problem in

itself) an indicator of autism is extremely limited and partial. It may be worth considering

whether the checklist approach to autism – informed by such instruments as the CHAT

(Checklist for Autism in Toddlers; Baron-Cohen et al., 2000) is appropriate now that the

symptoms or signs of autism have proliferated to such an extent that two individuals with

autism may not share any of the behaviours used to diagnose them.

Far better then, to focus on behaviour rather than condition, and so functional analysis

would seem to be a starting point for any therapeutic intervention. This shifts the emphasis

away from catch-all explanations that frame the individual child as a human kind (like

9 http://news.bbc.co.uk/1/hi/world/americas/3179789.stm10 http://www.canada.com/topics/news/national/story.html?id=410ebe27-db04-4ba9-99d9-39ec286f0b0f

Red flags - 18

‘autism’) towards breaking their behaviour down into discrete elements: eye contact, which

may or may not have anything to do with poor understanding of language, which may or may

not be related to a tendency to toe walk, and so on. Stop worrying about what connects all

these behaviours to each other; the answer may be ‘nothing’. It also gives practitioners the

opportunity to discriminate between different aspects of behaviour that might otherwise

congregate under the autism banner. If a child is whacking other children in preschool it is

clearly a problem that requires attention, but lining up toy cars rather than racing them round

the room only becomes problematic once the autism label is attached. Seeing autism as the

conceptual thread linking the two behaviours together does not enrich our understanding of

either one.

One way of looking at autism is as a ‘black box’: an input/output system whose

workings are (perhaps deliberately) obscured in the process of using it to make a rhetorical

point (Latour, 1987). This obscuration has allowed autism to contain, among a wealth of

other inconsistencies, both under- and oversensitivity to sensory stimuli, as well as claims

that children with autism both avoid human contact and seek out tactile stimulation.

However, even those researchers most committed to autism as a conceptual organising

principle have been finally driven to admit that “attempts at a single explanation for the

symptoms of autism have failed” (Happé, Ronald & Plomin, 2006), instead advocating

breaking up the ‘triad of impairments’ of social deficits, communication deficits, and rigid or

repetitive behaviours, and abandoning the search for a ‘gene for autism’. Has the lid finally

come off the black box?

Watching the edifice being constructed

A final point I would like to make, from a methodological perspective, is that we

cannot ignore the cultural and historical contexts in which discourse is produced and

Red flags - 19

reproduced. As a microanalyst, I could have easily contented myself with exploring the

conversation-like nuances of the thousands (millions?) of discussion threads on autism. They

would have told us much about the way symptoms are constructed by parents of children

with (or without) autism, but parents are only one of the groups with a stake in the autism

industry. Alongside professionals from health, medicine, education, psychology and the many

therapies on offer, there is a flourishing autism culture that manifests itself in books (fiction

and non-fiction), websites and other resources, and has a profound influence on the way

autism and related concepts are represented in contemporary society. Understanding the way

this is constructed, brick by brick, requires a good deal of archaeology. We are fortunate to

have the material culture so close to hand.

Glossary terms:

Social construction, discourse, Foucauldian discourse analysis, autism, ASD (Autism

Spectrum Disorder)

References

Accardo, P., Morrow, J., Heaney, M.S., Whitman, B., & Tomazic, T. (1982). Toe walking

and language development. Clinical Pediatrics, 31(3), 158-160.

American Psychiatric Association (2013). Diagnostic and statistical manual of mental

disorders (5th Ed.) Arlington, VA: American Psychiatric Publishing.

Baron‐Cohen et al. (2000). Early identification of autism by the CHecklist for Autism in

Toddlers (CHAT). Journal of the Royal Society of Medicine, 93, 521‐525.

Barrow, W.J., Jaworski, M., & Accardo, P.J. (2011). Persistent toe walking in autism.

Journal of Child Neurology, 26(5), 619-621.

Red flags - 20

Billig, M. (1999). Freudian repression: Conversation creating the unconscious. Cambridge:

Cambridge University Press.

Daley, T.C., & Sigman, M.D. (2002). Diagnostic conceptualisation of autism among Indian

psychiatrists, psychologists, and paediatricians. Journal of Autism and Developmental

Disabilities, 32, 13-23.

Doughty, S.S., & Doughty, A.H. (2008). Evaluation of body-pressure intervention for self

injury in autism. Behavioral Development Bulletin, 14, 23-29.

Eyal, G., Hart, B., Onculer, E., Oren, N., & Rossi, N. (2010). The autism matrix: The social

origins of the autism epidemic. Cambridge: Polity.

Filipek et al. (1999). Screening and diagnosis of autistic spectrum disorders. Journal of

Autism and Developmental Disorders, 29(6): 439-484.

Giles, D.C. (2006). Constructing identities in cyberspace: The case of eating disorders.

British Journal of Social Psychology, 45, 463-477.

Giles, D.C., & Newbold, J. (2011). Self- and other-diagnosis in user-led online mental health

communities. Qualitative Health Research, 21(3), 419-428.

Giles, D.C. & Newbold, J. (2013). ‘Is this normal?’ The role of category predicates in

constructing mental illness online. Journal of Computer-Mediated Communication,

18(4), 476-490.

Grandin, T. (1992). Calming effects of deep touch pressure in patients with autistic disorder,

college students, and animals. Journal of Child and Adolescent Psychopharmacology,

2(1), 63-72.

Hacking, I. (1986). Making up people. In T.C. Heller (Ed.) Reconstructing individualism:

Autonomy, individuality and the self in Western thought. Stanford, CA: Stanford

University Press, pp. 222-236.

Red flags - 21

Hacking. I. (1995). The looping effect of human kinds. In D. Sperber, D. Premack & A.J.

Premack (Eds.) Causal cognition: A multi-disciplinary debate. Oxford: Oxford

University Press, pp. 351-383.

Hacking, I. (1998). Mad travelers: Reflections on the reality of transient mental illnesses.

Charlottesville: University Press of Virginia.

Hacking, I. (2009). How we have been learning to talk about autism: A role for stories.

Metaphilosophy, 40, 499-516.

Happé, F., Ronald, A. & Plomin, R. (2006) Time to give up on a single explanation for

autism. Nature Neuroscience. 9, 1218-20.

Harlow, H. F., & Zimmermann, R. R. (1959). Affectional responses in the infant monkey.

Science, 130, 421-432.

Latour, B. (1987). Science in action: How to follow engineers in society. Milton Keynes:

Open University Press.

Nadesan, M.H. (2005). Constructing autism: Unravelling the ‘truth’ and understanding the

social. Abingdon: Routledge.

Nadig, A.S., Ozonoff, S., Young, G. S., Agata, R., Sigman, M., & Rogers, S.J. (2007).

Prospective study of response to name in infants at risk for autism. Archives of

Pediatric Adolescent Medicine, 161, 378-383.

Potter, Jonathan (1996). Representing reality: Discourse, rhetoric and social construction.

London: Sage.

Scott, K., & Baldwin, W. L. (2005).The challenge of early intensive intervention. In D. Zager

(Ed).

Autism spectrum disorders: identification, education, and treatment. (3rd ed., pp. 173-228).

Mahwah, NJ: Lawrence Erlbaum Associates.

Red flags - 22

Shattuck, P.T. (2006). The contribution of diagnostic substitution to the growing

administrative prevalence of autism in US special education. Pediatrics, 117, 1028-

1037.

Sniezyk, C.J., & Zane, T.L. (2014). Investigating the effects of Sensory Integration Therapy

in decreasing stereotypy. Focus on Autism and Other Developmental Disabilities.

Published online before print April 1, 2014, doi: 10.1177/1088357614525663

Stephenson, J., & Carter, M. (2008). The use of weighted vests with children with autism

spectrum disorders and other disabilities. Journal of Autism and Developmental

Disorders, 39(1), 105-114.

Szasz, T. (1971). The manufacture of madness: A comparative study of the Inquisition and

the mental health movement. London: Routledge and Kegan Paul.

Timimi, S., & Leo, J. (2009). Rethinking ADHD: From brain to culture. Basingstoke:

Palgrave Macmillan.

Timimi, S., Gardner, N., & McCabe, B. (2011). The myth of autism. Basingstoke: Palgrave

Macmillan.

Watkins, N., & Sparling, E. (2014). The effectiveness of the Snug Vest on stereotypic

behaviors in children diagnosed with an Autism Spectrum Disorder. Behavior

Modification. Published online before print April 28, 2014, doi:

10.1177/0145445514532128.

Watling, R., Deitz, J., Kanny, E.M., & McLaughlin, J.F. (1999). Current practice of

occupational therapy for children with autism. American Journal of Occupational

Therapy, 53, 498-505.