autism history

Eur Child Adolesc Psychiatry (2004)13:201–208 DOI 10.1007/s00787-004-0363-5 ORIGINAL CONTRIBUTION

ECA

P 363

Accepted: 19 August 2003

Sula Wolff, FRCP, FRCPsych (�)38 Blacket PlaceEdinburgh EH9 1RL, UK

■ Abstract Autism remains a fas-cinating condition, perhaps themost prolifically researched of allchild psychiatric disorders. Its his-tory yields many lessons: early ac-counts of possible autism are, withone exception, unclear; the greatestcontributions to our understandinghave come from individual clini-cians and researchers; the conceptand definition of the disorder havechanged greatly over the years;

some ideas once held with convic-tion, were later proved to be un-founded; and socio-political shiftsas well as research findings haveradically altered our understandingof the syndrome as well as the careand treatment offered to peoplewith autism.

■ Key words autism – Aspergersyndrome – history

Sula Wolff The history of autism

Introduction

Since its discovery 60 years ago, autism has been puz-zling, fascinating and massively researched. It has gen-erated two international Journals: The Journal of Autismand Developmental Disorders, which started life in 1971as The Journal of Autism and Childhood Schizophrenia,with Leo Kanner and Stella Chess as its foundation edi-tors; and Autism: the International Journal of Researchand Practice which first appeared in 1997. A further twojournals dedicated to autism are Focus on Autism andother Developmental Disabilities, first published in 1985,offering practical articles on care, treatment and educa-tion for a multidisciplinary readership and The Interna-tional Autism Research Review started in 1987. In 2001the University of Birmingham in collaboration with theWest Midlands Autistic Society and the Autism ServicesAccreditation Programme initiated the journal GoodAutism Practice. All this in addition to many publica-tions by parent organizations!

Announcing the change of title and scope of the Jour-nal of Autism and Developmental Disorders in 1979, itsthen editors, Eric Schopler, Michael Rutter and StellaChess, stressed Kanner’s emphasis on developmental

distortions in autism, the increasing evidence of linksbetween autism and other developmental disorders, aswell as the association of autism with specific medicalconditions. While it was at first thought that autismmight be an early form of childhood schizophrenia, by1979 this idea had been abandoned. The Journal hence-forth was to be concerned with a wider range of devel-opmental issues to clarify the similarities and diffe-rences between the various distortions of thedevelopmental process [69].

The main aim of the editors of Autism: the Interna-tional Journal of Research and Practice (published in as-sociation with the UK National Autistic Society) was tostrengthen the interface between research and practice,in the belief that new treatments are often inadequatelyevaluated and that researchers need more regularly toclarify the implications of their findings for practice[40].

Early accounts of children with possible autism

Surprisingly, in view of its striking clinical features, fewearly accounts of psychiatric disorders of children fulfilthe classical criteria for Kanner’s syndrome. There are

202 European Child & Adolescent Psychiatry (2004) Vol. 13, No. 4© Steinkopff Verlag 2004

descriptions of conditions allied to autism, and of intel-ligent and gifted children and adults who would now bediagnosed as having Asperger syndrome. But there isonly one report of autism without associated brain dam-age, mental retardation, possible developmental lan-guage disorder or severe early social deprivation.

This is Uta Frith’s analysis of the depositions of 29witnesses in the legal case of Hugh Blair, son of a Scot-tish landowner, who in 1747 at the age of 39 appeared inan Edinburgh court for a decision on his mental capac-ity to contract a marriage [31, 20]. His younger brothersuccessfully petitioned for annulment of the marriage togain his brother’s inheritance. In a beguiling book, enti-tled “Autism in History”, written with the social histo-rian Rab Houston, Frith convincingly argues for a diag-nosis of autism, despite the lack of a developmentalhistory. All we know is that Hugh Blair had not been ex-posed to early privations or serious illnesses. Thedeficits in his social relationships included tactlessnessand abnormal gaze,although in adult life he was friendlyand affectionate. There was severe retardation and ab-normality of language, including echolalia (“he was inthe habit of repeating simple phrases”) and, while ableto write out the Lord’s prayer faultlessly, when examinedon the catechism at school, he would always reply withboth question and answer. His obsessive and repetitivebehaviour included odd motor mannerisms, collectingfeathers and sticks, always sitting in the same seat inchurch and insisting that domestic objects retainedtheir same place.At the time he was described as lackingcommon sense and having a “silent madness”.

Until then,John Haslam had been credited with antic-ipating Kanner by 140 years [73].In his “Observations onMadness and Melancholy” published in 1809, in a chap-ter entitled “Cases of insane children”,Haslam describeda boy of nearly 7 who had had infantile convulsions, se-vere measles as well as a small pox inoculation. He wasslow to walk and very late to talk. In hospital he was rest-less and inattentive, but curious about his environment,and he lied to cover up misdeeds. He had a poor grasp ofdistance, attempting to reach the ceiling. When seenagain at 13 his language had progressed but he spoke ofhimself in the third person and pulled his mother’s armto gain her attention. No echolalia or abnormal gaze arerecorded.He recognised Dr Haslam and was friendly.Hewas solitary (watching other boys at play, but never join-ing in) and had a number of obsessive preoccupations(he loved going to church,without understanding its pur-pose; he never used a closet, only a bowl as when he wasin hospital; he talked only about toy soldiers and lovedmartial music) [26].Vaillant,rightly,suggested the possi-bility of a post-encephalitic syndrome [73].

Henry Maudsley in his 1879 edition of The Pathologyof Mind, includes a chapter on “The insanity of early life”which was greatly respected by Kanner.Although Maud-sley mentioned affective insanity and moral insanity,

recording here in some detail a 13-year old boy who mayhave had Asperger syndrome, he did not describe anychild with classical autism [54].

Early accounts of the history of child psychiatry alsofail to mention childhood autism [12, 51, 25].

There has been much speculation about the possibledisabilities of “wolf children”, that is children discoveredin the wild, who had supposedly been reared by wolvesor other wild animals [59].When found, they were mute,tended to walk on all fours, were insensitive to cold, andate only raw foods. Numerous cases were described overtime, especially in India. Ireland in 1875 thought most ofthem were idiots, who had been abandoned by their im-poverished parents and that the idea that cruel animalswould spare the innocents was an “agreeable myth”[37].But Malson in 1972 dismissed this notion because, he ar-gued, how could such backward children survive ontheir own in the wild [53]? He preferred Tredgold’s ideaof “isolation dementia” [72].

The most celebrated enfant sauvage was Victor, “thewild boy of Aveyron”, found naked and covered withscars, in the woods in 1798 aged about 11 or 12. An ear-lier sighting and failed capture when he was 6 is de-scribed by Jean Itard [53].Victor’s fame rests on the ded-icated, ingenious and affectionate attempts over a 5 yearperiod of this young French physician to educate andhumanise him [53, 42, 47].

At first,Victor’s gaze was shifting and expressionless;he was insensitive to loud or pleasing noise and indif-ferent to smells, but sniffed at every object; he made onlyguttural sounds; did not imitate; attended only to ob-jects he wanted; could not climb a chair to reach what hewanted; and he rocked to and fro.He seemed profoundlymelancholy but had outbursts of laughter and re-sponded with joy to the sun, a bright moon, the snow. Hewas gluttonous, although at first eating only acorns,potatoes and raw chestnuts. Itard devised a carefullygraded behavioural programme whose goals were first,to help Victor form social attachments, then to awakenhis nervous sensibilities, to extend the range of his ideas,and finally to induce speech via imitation. Victor had agood memory and a great sense of order. Within 9months he was able to match letters of the alphabet. Atthis time he had one convulsion. Five years later, he hadlearnt to distinguish emotions expressed by differenttones of voice; he had become genuinely affectionateand loved helping people; he enjoyed his lessons; usedobjects imaginatively; could bring objects whose nameswere written down and could ask for things in primitivewriting, but his spoken language never progressed be-yond meaningless monosyllables.

Itard thereafter devoted his life to the education ofmute children, both deaf mute and children with hear-ing, and he devised teaching methods still relevant to-day in the education of children with autism and withother language and intellectual disabilities.

S. Wolff 203History of autism

John and Lorna Wing held “there can be no doubtthat Victor was autistic” [78, 81]. This view is shared byUta Frith [20] and others. Itard worked for over 20 yearswith 40 language disabled children whom he distin-guished from the mentally retarded.A late report, whichKanner may not have seen [7], suggests that some (mutechildren without deafness or mental retardation, withpoor peer relationships, specific difficulties with pro-nouns and a fugitive gaze) might now be diagnosed aswithin the autistic spectrum but without all the featuresKanner described (there was no mention of stereotypic,obsessional behaviours) and some may have had devel-opmental language disorders. Victor may have beenautistic or dysphasic [6] but the picture is obscured byhis past total social isolation, which we now know cancause “quasi-autistic patterns” when it begins in veryearly infancy [20, 66].

Moreover, in his history of the mentally retarded,Kanner described Itard’s work with Victor without men-tioning the possibility of early infantile autism [42]. It isalso surprising that Itard, that superb observer, did notsingle out this syndrome among the mute children hesaw. Perhaps the fact that he concentrated on childrenwithout mental handicap may help to account for this.

Of the syndromes allied to early childhood autismthe most clear cut is Heller’s “Dementia Infantilis” [27,36], a condition now recognised as disintegrative disor-der and known to be very rare [18, 52]. Heller had seen28 children with a very similar symptomatology amonga much larger group of mentally retarded children. Theyhad developed normally until their 3rd or 4th year whena regression occurred affecting first mood with irri-tability, weepiness, anxiety, negativity and temper out-bursts, followed by apparent hallucinations and a pro-gressive dementia so that within a few months alllanguage and self care skills were lost, there was incon-tinence and, while motor functions were preserved andthere were no abnormal neurological signs, the childrenhad tic-like movements. But their facial expression re-mained intelligent, their gaze clear and they appeared tobe attentive to their surroundings. At follow-up, they re-mained demented but, because they looked so intelli-gent, many of their parents never gave up seeking a cure.Heller tells us he saw only a single case of schizophreniain 35 years of practice: a girl aged 5. He too, excellent ob-server as he clearly was, does not describe early infantileautism.

Less convincing is De Sanctis’ Dementia Praecocis-sima [13, 14]. Of the 3 children aged 6, 7 and 10 years hedescribed, one seems to have had mental retardationwith autistic features and two had been traumatised anddeprived.

There is also an account of what might be symptomsof autism by Earl in children diagnosed as having “prim-itive catatonia of idiocy”[15].Severe motor stereotypies,self-injurious behaviour and mutism occurred in se-

verely retarded children, whose clinical picture is ob-scured by prolonged institutionalisation. One mute boyonce uttered a complete and pertinent sentence understress, a feature of autism described by Kanner [41].

The contributions of individual clinicians and researchers

Eisenberg, in his preface to Kanner’s writings, describedhim as self-educated, irresistible to children like a piedpiper, and recalled his clinical interviews as “moving hu-man encounters” [44]. He was clearly a wonderful clini-cian, and widely read. His papers are extraordinarilywell written and, unusual for the time, well referenced.In his original description, in 1943, of a unique syn-drome, not previously identified: “Autistic disturbancesof affective contact”,he stressed its emotional basis,nowupheld by Peter Hobson [30], and its presence since thebeginning of life. He thought it was probably rare andmay in the past have been confused with feebleminded-ness or schizophrenia. He listed as the crucial symptomsan “extreme autistic aloneness”; abnormal speech withecholalia, pronomial reversal, literalness and inability touse language for communication; and monotonous,repetitive behaviours with an “anxiously obsessive de-sire for the maintenance of sameness”. Three of his first11 children were mute. From the start he noticed theskewed sex ratio (3 of the 11 were girls); the enlargedheads of 5 of the 11, now rediscovered [3]; and, althoughhe wavered about this in later years, he stressed the dis-tinction from schizophrenia, later demonstrated byKolvin [45, 46]; as well as the constitutional basis of thedisorder, now amply confirmed. The children, he wrote“have come into the world with innate inability to formthe usual, biologically provided affective contact withpeople” [41]. He considered the disorder to be a psy-chosis, and indeed this view was still held by Rutter inhis foreword to the 1973 volume of Kanner’s writings[64]. On follow-up, he found the children’s solitarinessand language to improve with age [44].

Kanner described the parents as highly intelligent,preoccupied with abstractions of a scientific, literary orartistic nature, limited in genuine interest in people.Later he wrote: “There is a resemblance between theirmake-up and that of their children, except that theiraloofness has not reached the gross proportions of apsychotic illness” [44]. The special features of parents ofautistic children have also now been amply confirmedby comparative studies [86,3] and strengthen the notionof a genetic causation. Kanner thought that mild autistictraits may lead to success in a “non-psychotic existence”.What he failed to spot was the children’s selective refer-ral: 4 of the first 11 had fathers who were themselves psy-chiatrists. Over the next 30 years Kanner and Eisenbergfollowed up more than 100 affected children. They dif-


fered from children with aphasia, later confirmed bycomparative studies [6] and language competence at 5years was a good prognostic sign. Where Kanner failedwas to stress the contributory effects of parental lack ofwarmth on constitutionally predisposed children. Andthis was congruent with the then current ethos of parentblame which was to last for some decades. We shouldnever underestimate the effects on scientific thinking ofthe prevailing beliefs and culture.

Curiously, in his comprehensive literature reviews,Kanner made no mention of Hans Asperger. This Vien-nese paediatrician in 1944 described 4 cases of “autisticpsychopathy of childhood” and summarised the fea-tures of other similar children [1, 19]. They were oftenable, some with extraordinary gifts in mathematics ornatural science with creative,original modes of thinkingand objective self-appraisal. But their social and emo-tional relationships were poor and they were sometimesmalicious. Themselves highly sensitive, they lacked feel-ings for others, had stereotypic behaviours as well aspervasive special interests and were clumsy. Languageacquisition was not usually delayed, but language usewas idiosyncratic. The condition could be recognised inearly childhood and was life long. Later work adjust-ment was often good but the social handicaps endured.Asperger stressed the constitutional basis of the condi-tion: many parents had similar personality traits, and hesuggested that these might be an extreme variant of themale intelligence [19]. Baron-Cohen has recently pro-vided evidence that this could indeed be so [4].

Asperger’s work was less systematic than Kanner’sand his prognostic conclusions impressionistic. His lit-erature review too was incomplete. He failed to mentionthe marvellous German account of 6 cases exactly likehis own, described by Ssucharewa as “schizoid personal-ity of childhood” in 1926 [71, 84]. But he offered devotedcare and treatment to affected children in a special unitand had much to say about how they can best be edu-cated [19].

Although van Krevelen [75] and others [85] at-tempted to put Asperger’s work on the map, it was notuntil Lorna Wing’s seminal paper of 1981, that As-perger’s syndrome as we now know it was born [80].

Michael Rutter’s comparative studies in the 1960svalidated the syndrome and features of autism [62, 68]which a previous working party [10, 11] had notachieved; uncovered the high frequency of epilepsy atadolescence and confirmed the prognostic significanceof early language and intelligence [63]. In a landmarkstudy with Bartak [67] he found behavioural approachesthe best teaching method and with Pat Howlin he evalu-ated a home treatment programme for young childrenwith autism [35]. But most important, his twin and fam-ily studies proved once and for all that autism has astrong genetic basis and that an excess of relatives havelesser variants of the autistic syndrome [17, 3]. The

Autism Diagnostic Interview [48] and the Autism Diag-nostic Observation Schedule [50] now enable re-searchers to define their study populations accuratelywhile circumventing the changing definitions of DSMand ICD over the years. A summary of Rutter’s views onautism appear in his recent Festschrift [65].

Stella Chess was the first to discover that autism canbe associated with neurological disease, in a series ofchildren with congenital rubella [9].

Kolvin’s comparative studies distinguishing earlychildhood autism from childhood schizophrenia, by ageof onset, phenomenology, family history and associatedsymptoms, are now rightly regarded as classics in thehistory of autism [45, 46].

Beate Hermelin’s innovative controlled studies to-gether with Neil O’Connor [29] of the psychological fea-tures of children with autism, culminated in her morerecent explorations of the “savant” phenomenon [28]and set the scene for the ground-breaking studies of UtaFrith [19, 20] and Francesca Happé [24] of the psycho-logical deficits of autism and now, via brain imaging, oftheir neurological basis [20].

Lorna Wing, who put Asperger’s syndrome on themap in 1981 [80], has greatly contributed over the yearsto the epidemiology of autistic conditions [82]; tochanging concepts of autism (we owe the “Autistic Spec-trum” largely to her influence); to the birth of parent or-ganisations; to the literature on autism for parents [79];and to the diagnosis, treatment and care of affected peo-ple and their families.

Finally, Gillberg’s wide ranging studies have added toour knowledge of the epidemiology, genetics, outcomeand clinical management of children with autistic con-ditions and have helpfully clarified the diagnostic fea-tures of Asperger syndrome [21, 22].

Changes in the concept and definition of the disorder over the years

Kanner defined autism narrowly and was dismayed byits widening “almost over night”to include children withisolated autistic symptoms on the basis of brain damageand mental retardation. Suddenly, in the 1950s, “thecountry was populated by a multitude of autistic chil-dren” [44]. Moreover, in the 1950s and 1960s, especiallyin the US,schizophrenia was everywhere and in childrenit included autism [5]. Schizophrenia was often held tobe psychogenic [49] and the psychoanalytic theorieswhich then prevailed, often led to wasted and painfulyears of expensive psychotherapy for affected childrenand their parents.

As a result of Rutter’s and Kolvin’s studies in the1960s and 1970s, the concept was again restricted only towiden once more in the 1980s.

This wider concept took off from Wing and Gould’s


[82] epidemiological study which was based on childrenwith special educational needs and included many withbrain syndromes and learning disabilities. From a ther-apeutic stand point, this was helpful because when suchchildren have autistic features, they benefit from exactlythe same educational and therapeutic methods as otherchildren with autism. It was also helpful that the US De-velopmental Disability Act of 1975 [74] included themalong with other people with severe and chronic devel-opmental disabilities and mental retardation, because ofthe similarities of their administrative needs for finan-cial support and for special educational services.

In addition, Wing’s rediscovery of Asperger’s work[80] drew attention to high functioning autism withwhich Asperger syndrome, as currently defined, is oftenequated [19, 24, 34], and this culminated in the birth ofthe autistic spectrum which has been useful both clini-cally and as a basis for genetic and other studies.

More debatable is the widening of the concept to in-clude exceptionally gifted people with Asperger syn-drome, such as philosophers and mathematicians, forexample, Wittgenstein [83] and the Nobel prize winner,John Nash prior to his schizophrenic illness [57] whosetherapeutic needs, if any, are very different.

Ideas once held with conviction, which proved to be unfounded

The first, and most malignant was that autism is causedby poor parenting, when now we know that the unusualfeatures of parents of autistic children are due to sharedgenes [65]. The second is that autism is among the groupof schizophrenias, disproved by Kolvin [45, 46]. Here theidea that autism is a developmental disorder rather thana psychosis has been helpful. The third, that autisticsymptoms are secondary to a developmental receptivelanguage disorder, once held by Rutter, was disproved byhis own researches into autism and language disorders[6]. The fourth, that the incidence of the condition insiblings of affected children is not raised, was disprovedby comparisons of the population and family incidenceof autism [65].

Socio-political shifts and research findings have radically changed the understanding of autism and the care and treatment offered to affected people

In a review of child and adolescent psychiatry over thepast 50 years, Eisenberg [16], recollecting that he found3 autistic siblings among 131 autistic children but failedto spot the genetic cause, stressed that our conclusionsalways reflect prevailing concepts and ideas. Culturalshifts as well as research findings have influenced our

concepts of autism and the education and treatmentoffered to affected people.

The period of long-term institutionalisation for psy-chiatric patients and for those with learning disabilitiesendured well into Kanner’s lifetime and he realised thatthis “cut short any prospects of improvement” [44]. Buteven Kanner, who always stressed the constitutional ba-sis of autism, was caught up in the era of psychoanalysiswhen all childhood disorders were attributed to poorparenting, and held that this was a contributory cause.

Reviews of the education and treatment of autisticchildren [33, 58] make clear that, while the behaviouraladjustment of children with autism can be much im-proved with early intervention, there is no effect as yeton long-term prognosis. Interventions are also depen-dent on the administration of medical and educationalservices. In the US, for example, where managed caresets limits to the intensity and duration of psychiatrictreatments, over 50 % of children with autism are takingdrugs or vitamins, a situation very different from that inthe UK. Here the educational policy of “inclusion”,whereby children with disabilities attend main streamschools wherever possible, coupled with the widening ofthe concept of autism to include more able children,means that more affected children are now expected tocope, with special help, in ordinary classrooms and thatmore teachers are learning about the needs of autisticchildren [39].

The increased awareness of teachers, doctors and thegeneral public as well as the widening of the concepthave contributed to the fact that far more children arenow recognised as having autistic spectrum disordersand the estimated prevalence of “autism” has increasedover the years from around 4–5 per 10,000 to around 6per 1,000 children [8]. The greater awareness of the con-dition is largely attributable to the activities of parentorganisations.

These started in the 1960s and are now world wide.They provided information for policy makers and thepublic and established residential and day schools forchildren with autism, implementing evidence-basedbest practice [76]. In the 1970s and 1980s provisionswere made for affected adults too and this coincidedwith the closing of long stay hospitals. In the UK,at least,few people with autism would now be found in institu-tions.

As parents of autistic children found their voice, andthe boundaries of autism extended to include more ablepeople with Asperger syndrome, published accounts byparents and affected people themselves enormously ad-vanced the understanding of the general public, of pro-fessionals in education and health care, and of affectedfamilies. Among the best publications of this kind areLiane Willey’s “Pretending to be Normal” [77], KateRankin’s “Growing up Severely Autistic” [61], TempleGrandin’s “An Inside View of Autism” [23], and Luke


Jackson’s “Freaks, Geeks and Asperger Syndrome”, atouching account of his own predicament by an adoles-cent boy [38].

Increasing awareness of autism has led to many in-novative interventions and wider access to good careand education. But increasing public debate aboutautism has also had its down side. Desperate parents canbe seduced by untested and often expensive treatmentswhich later prove to be ineffective. They include facili-tated communication, auditory integration, “holding”therapy, and a variety of dietary interventions [32, 56,33].

Most worrying in the UK has been the furore overMMR vaccination. Parent organisations, the press andtelevision were persuaded by a very small number ofotherwise undistinguished doctors and psychologiststhat the triple vaccine induces bowel disorder in a pro-portion of children and that this can cause autism. De-spite lack of evidence, the increasing prevalence of autis-tic disorders has also, by some, been attributed tochanging vaccination policies. While the originators ofthis theory lay no claim to scientific proof for their be-liefs, they have, via the media, persuaded many parentsof children with autism to see their past vaccination asits cause and to seek legal redress and compensationfrom the UK government. Many parents in the generalpopulation now refuse the triple vaccine for their youngchildren, lobby for the introduction of single vaccines,and thus put the population at risk of serious childhoodinfections. A recent review of the prevalence and causesof autism by an MRC committee [55], composed of ex-

perts, parents of affected people and representatives ofparent organisations, found no link between MMR vac-cination, bowel disease and autism, while of courserecognising that a negative association can never beproven. This report has been largely ignored by the me-dia and parent organisations and, in the present “postmodernist” climate of “lay epidemiology”, distrust ofscience, doctors and politicians, government reassur-ances have so far been ineffective [70, 60].

Conclusions

Exceptional clinicians such as Kanner and Aspergeropened our eyes to clinical syndromes previously un-seen. But, even at a time when most developmental dis-abilities were relegated to the general category of men-tal deficiency with the implication of a hopelessprognosis and institutionalisation as the outcome,an in-novative therapist like Itard devised a method of reme-dial education and personal care that is still relevant to-day. Cultural and political shifts have profoundlyaffected how we view autism and its boundaries, therange of ability levels of people now included as withinthe autistic spectrum, and the range of interventionsoffered. Some of these are still untested and others re-main popular despite their proven ineffectiveness. Buton the whole, the power of parent organisations and thedestigmatisation of disabilities, at least in childhood,have greatly improved the services for autistic people ofall ages.

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