psychiatric condition a disordera disability and a handicap Everal - PDF document

psychiatric condition, a disorder,a disability, and a handicap. Everaloneness of these children, psychiatrynormal, ill, and deficient. Through theDisorderstion [APA], 1994) and International Clas- FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIESVOLUME 17, NUMBER 3, FALL 2002Is Asperger SyndromeNecessarily Viewed as a Simon Baron-CohenThis article considers whether Asperger syndrome (AS) should necessarily be viewed asa disability or, from a different perspective, as a difference. The author concludes thatdifferencein relation to AS is a more neutral, value-free, and fair description, the empathizingÐsystemizing model. form of retardation. What is not clear,and therefore the subject of the debatepresented next, is whether individualswith AS necessarily have a disability. Forthe present purposes, the arguments inelation to AS and HFA are considered, focus-v17n3-p186 8/29/02 12:59 PM Page 186 at CAMBRIDGE UNIV LIBRARY on February 11, 2016foa.sagepub.comDownloaded from VOLUME 17, NUMBER 3, FALL 2002 187 4.The child shows relatively little in-terest in what social groups aredoing, or in being a part of them(Bowler, 1992; Lord, 1984);5.The child has strong, persistent in-terests (see Note 1);6.The child is very accurate at per-ceiving the details of information(Plaisted, OÕRiordan, & Baron-7.The child notices and recalls things8.The childÕs view of what is relevantand important in a situation may9.The child may be fascinated bypatterned material, be it visual10.The child may be fascinated byswitches, water taps); a little morecomplex (weather fronts); or ab-11.The child may have a strong drivegories of information (types oflizard, types of rock, types of fabric,12.The child has a strong preferencefor experiences that are controllablerather than unpredictable.12 behavioral features are sufficient to il-lustrate that children with AS are differ-value-free terms: None imply any neces-sary disability. Rather, most of the abovefacts merely show the child to be im-ing the difference between a person withan autism spectrum condition and onewithout it (Baron-Cohen, 2000).Being more object-focused than in an environment that expects everyoneto be social. But a momentÕs reflection tern (of being more people-focused thanobject-focused) are not considered dis-who prefers to stay in the classroom por-ing over encyclopedias and rock collec-tions during break time, when other chil-dren are outside playing together, couldsimply be seen as different, not disabled.than the other children, or why theirnormalcy. Equally, a child with AS who has strongbut narrow interests of an unusual nature(e.g., learning the names of every kind ofbird) may seem different to a typical childwho has been interested only in learningsurely the narrow, deep knowledge is noless valuable than the broad, shallow va-riety, and certainly not a necessary indexbers on lampposts, of which the rest of usare unaware, does this make him or herimpaired? We could say it is simply ferent.The same argument can be ap-The Neurobiology of AS Is Not Better or Worse Than inAS involves a range of neural differences.A full review of these is beyond the scopeof this article, but the reader can consultet al., 1995; Piven, Bailey, Ranson, &Arndt, 1998; Piven et al., 1990). In somesystem, increased cell density has beenKemper, 1988), while in other regions of the brain, structures are reported to be smaller. For example, the cerebel-lar vermis lobule 7 (Courche

sne, Yeung-Courchesne, Press, Hesselink, & Jerni-the corpus callosum (Egaas, Courchesne,& Saitoh, 1995) have both been re-ported to be reduced in size with autism. However, although these neural abnor-malities signal differences between theother.Similarly, AS appears to be strongly fa-milial, implying a genetic etiology, andthe first report from an internationalmolecular genetic consortium study re-ported a linkage on Chromosome 7 inaffected individuals (Bailey, Bolton, &Rutter, 1998). The molecular geneticbasis of AS remains to be worked out indetail, but, again, such findings are atbest evidence of difference and in no wayÒDifferenceÓ Precludes Value-Many features of AS can be redescribedin ways that are more neutral, in terms ofAS including a different cognitive style,more object-oriented and more focusedin terminology is that the term spectrum disordersis being replaced bythe term autistic spectrum conditions. the term cognitive style, this forestalls theterm disorder, appropriate medicalizing of an individ-changes in terminology is clear. It is pos-sible to describe AS in value-free ways.The Difference View Is MoreA further argument for favoring the dif-ference view over the disability view isautism appears on a continuum (Wing,sumes that there is an underlying dimen- focus-v17n3-p186 8/29/02 12:59 PM Page 187 at CAMBRIDGE UNIV LIBRARY on February 11, 2016foa.sagepub.comDownloaded from FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES 188 people vary. There is still debate over pre-dimension. Later in this article a modeltrum is introduced. Arguments for Viewing ASa DifferenceLack of Social Interest The first argument for seeing AS as a dis-ior may reflect a disability in that area. Inthis case, the lack of normal sociability orability. But this might be seen as unfair:not spend much, if any, time thinkingabout mathematics problems, but Inext door office spends a lot of timethinking about mathematics problems,and hardly any thinking about people.say that I simply prefer to spend timethinking about peopleÑthey are moreinteresting to me. To say that a personhas a disability because he or she rarelydoes something could be seen as unrea-basketball player Michael Jordan has adeficit in fine-motor coordination on thegrounds that he is not known for spend-needlework. This may be true of him,handÐeye coordination, physical speed,strength, agility, and so forth, is to putthings back to front, and would be an in-The second rejoinder to the differenceargument is that children with AS showdifferences precisely because they are dis- abled, are impaired, suffer cognitive defi-cits, and so forth. Thus, one might arguethat they are less influenced by others be-consider other peopleÕs points of view,feelings, and thoughts (the theory-of-mind or empathy deficit; Baron-Cohen,Jolliffe, Mortimore, & Robertson, 1997;Baron-Cohen et al., 1985); they mayfocused for the same reason. For theseeasons, the rejoinder goes, we shouldetain the notion of AS as a disability. Itis possible that reduced empathy may notability, but this is particularly powerful asan argument when the impact of empa-ered: It can be very hard for the family orpartner or peer group of the person withAS to be in a relationship with someonerally. This view has considerable weight,and it remains likely that as long as theempathic are high, problems will occur. Requires Extra SupportPerhaps the most compelling reason forneed to be recognized as

different, mayequire different kinds of teaching meth-treatment) and access to such support inthe present legal framework flows to thecan be made that autism is a disability.child is Òdifferent.Ó Given this economiceality, one should not remove the termfrom the description of ASwithout ensuring that extra provisionwould still be available if the term differ-was more appropriate. This is reallyan issue relating to social policy, healthdisability from the perspective of others(on the receiving end of reduced em- pathic behavior) and from the perspec-tive of accessing funding for support. A new model has been created that at-along which AS differs from Ònormality.ÓThe model suggests that the two relevantindividuals with AS are show degrees of empathizing impair-ment, whereas their systemizing may beintact or even superior, relative to theirmental ages (Baron-Cohen, 2000;Baron-Cohen & Hammer, 1997a). There is plenty of evidence that peoplewith autism spectrum conditions havedegrees of difficulty in mind-reading, orplex emotions. There have been morethan 30 experimental tests in this area,the vast majority revealing profound im-pairments in the development of thesestanding (see Baron-Cohen, 1991, 1995,deficits only on age-appropriate adulttests of empathizing (Baron-Cohen et al.,1997; Baron-Cohen, Wheelwright, &Jolliffe, 1997; HappŽ, 1994). This deficitderlie the difficulties such children have(Baron-Cohen, 1988; Tager-Flusberg,Other evidence suggests that childrencal and parental descriptions of childrenwith AS frequently refer to their fascina- focus-v17n3-p186 8/29/02 12:59 PM Page 188 at CAMBRIDGE UNIV LIBRARY on February 11, 2016foa.sagepub.comDownloaded from VOLUME 17, NUMBER 3, FALL 2002 189 intentional systems; Hart, 1989; Lovell,1978; Park, 1967). Indeed, it is hard tofind a clinical account of autism spectrumother. Examples include extreme fascina-tions with electricity pylons, burglaralarms, vacuum cleaners, washing ma-windows). A systematic survey of obses-sions in these children has confirmedsuch clinical descriptions (Baron-Cohenholding forth like a Òlittle professorÓ onhis or her favorite subject or area of ex-pertise, often failing to detect that the lis-tener long since became bored with thesubject. The apparently precocious me-oblivion in regard to their listenerÕs levelof interest, suggests that these individu-with the weather (meteorology), the for-motion of the planets (astronomy), andthe classification of lizards (taxonomy).one side, experimental studies convergearound the same conclusionÑthat chil-dren with AS not only have intact sys-(relative to their empathizing and relativeverbal). Two studies have found thatchildren with autism showed good un-Perner, 1991; Leslie & Thaiss, 1992). Inthese studies, children with autism couldtograph was at odds with the current vi-poor performance on False Belief tests.The pattern of results by the children preted as showing that although theirunderstanding of mental representationswas impaired, their understanding ofphysical representations was not. This pat-tern has been found in other domains(Charman & Baron-Cohen, 1992, 1995).But the False Photo Test is also evidenceof mental-ageÐmatched controls.Family studies add to this picture. Par-ents of children with AS also show mildpathizing task, mirroring the deficit in(Baron-Cohen & Hammer, 1997b). Thisis assumed to reflect genetic factors, asAS appears to have a strong heritableet

al., 1994; Folstein & Rutter, 1977; Leents of children with autism or AS to beoverrepresented in occupations in whichfor such a cognitive profile is engineer-A recent study of 1,000 families foundmatrilineal) of children with autism or ASwere more than twice as likely to work inthe field of engineering, compared withcontrol groups (Baron-Cohen et al.,1997). Indeed, 28.4% of children withautism or AS had at least one relative (fa-gineer. Related evidence comes from asurvey of students at Cambridge Univer-sity who were studying either sciencesmanities (English or French literature).When asked about family history of aphrenia, anorexia, autism, Down syn-drome, language delay, or manic depres-sion), the students in the science groupshowed a sixfold increase in the rate ofspecific to autism (Baron-Cohen et al.,Finally, children with AS have beenfound to perform at a superior level on a test of systemizing (Baron-Cohen, and some adults with AS have reacheding (Baron-Cohen, Wheelwright, Stone,& Rutherford, 1999).individuals with AS are understood interms of an underlying dimension, andwith normality, so that we are all situatedsomewhere on the same continuum.Most important, to reiterate, oneÕs posi-tion on the continuum is said to reflect adifferent cognitive style (Frith, 1989).line between ability and disability. Finally,with AS are in some sense qualitativelydifferent from those without AS. Such anotion is increasingly hard to defend inthe light of intermediate cases. These areeasier to accommodate in terms of quan-In a world where individuals are all ex-pected to be social, people with AS areif environmental expectations were tochange, or if individuals with AS were setdown in a different environment, theywould not be perceived as disabled. Aswe have seen in relation to other condi-are relative to particular environments,Richters & Cicchetti, 1993; Spitzer, 1999;there is no great benefit to a precise eyethan failure.The two reasons for retaining the termin relation to AS may be (a) toensure access to provisionÑit may be thelegal system that needs revision so that achild whose autistic ÒdifferenceÓ leadseceive special support; and (b) to recog-nize that reduced empathy can create focus-v17n3-p186 8/29/02 12:59 PM Page 189 at CAMBRIDGE UNIV LIBRARY on February 11, 2016foa.sagepub.comDownloaded from FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES 190 considerable emotional difficulties forthose attempting to have a relationshiplined. Family support is clearly neededfor those in relationships with individualsalso needs to be recognized.Simon Baron-Cohen,of Cambridge in the Departments of Experi-mental Psychology and Psychiatry; fellow in ex-perimental psychology at Trinity College, Cam-bridge; co-director of the Autism ResearchCentre in Cambridge; and director of theCambridge Lifespan Asperger Syndrome Ser-vice. Dr. Baron-Cohen has conducted extensiveesearch into autism spectrum conditions at thelevels. Address: Simon Baron-Cohen, AutismResearch Centre, Departments of Experimen-tal Psychology and Psychiatry, University of1.This article is based on an essay first pub-Development and Psychopathol-ogy, 12,2.The author was supported by grants from theMedical Research Council (UK), the ThreeGuineas Trust, the Shirley Foundation, theIsaac Newton Trust, and the James Mc-1.ÒPersistentÓ here does not necessarily meanfor years, but certainly for extended periodsof time. Typical reports describe intense i

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