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

Sula Wolff The history of autism

■ Accepted: 19 August 2003 Abstract Autism remains a fas- some ideas once held with convic- cinating condition, perhaps the tion, were later proved to be un- most prolifically researched of all founded; and socio-political shifts child psychiatric disorders. Its his- as well as research findings have tory yields many lessons: early ac- radically altered our understanding counts of possible autism are, with of the syndrome as well as the care one exception, unclear; the greatest and treatment offered to people contributions to our understanding with autism. have come from individual clini- ■ Sula Wolff, FRCP,FRCPsych () cians and researchers; the concept Key words autism – Asperger 38 Blacket Place and definition of the disorder have syndrome – history Edinburgh EH9 1RL, UK changed greatly over the years;

distortions in autism, the increasing evidence of links Introduction between autism and other developmental disorders, as well as the association of autism with specific medical Since its discovery 60 years ago, autism has been puz- conditions. While it was at first thought that autism zling, fascinating and massively researched. It has gen- might be an early form of childhood schizophrenia, by erated two international Journals: The Journal of Autism 1979 this idea had been abandoned. The Journal hence- and Developmental Disorders, which started life in 1971 forth was to be concerned with a wider range of devel- as The Journal of Autism and Childhood Schizophrenia, opmental issues to clarify the similarities and diffe- with Leo Kanner and Stella Chess as its foundation edi- rences between the various distortions of the tors; and Autism: the International Journal of Research developmental process [69]. and Practice which first appeared in 1997.A further two The main aim of the editors of Autism: the Interna- journals dedicated to autism are Focus on Autism and tional Journal of Research and Practice (published in as- other Developmental Disabilities,first published in 1985, sociation with the UK National Autistic Society) was to offering practical articles on care, treatment and educa- strengthen the interface between research and practice, tion for a multidisciplinary readership and The Interna- in the belief that new treatments are often inadequately tional Autism Research Review started in 1987. In 2001 evaluated and that researchers need more regularly to the University of Birmingham in collaboration with the clarify the implications of their findings for practice West Midlands Autistic Society and the Autism Services [40]. Accreditation Programme initiated the journal Good Autism Practice. All this in addition to many publica- tions by parent organizations! Early accounts of children with possible autism Announcing the change of title and scope of the Jour- nal of Autism and Developmental Disorders in 1979, its Surprisingly, in view of its striking clinical features, few ECAP 363 then editors, Eric Schopler, Michael Rutter and Stella early accounts of psychiatric disorders of children fulfil Chess, stressed Kanner’s emphasis on developmental the 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- recording here in some detail a 13-year old boy who may ligent and gifted children and adults who would now be have had Asperger syndrome, he did not describe any diagnosed as having Asperger syndrome. But there is child with classical autism [54]. only one report of autism without associated brain dam- Early accounts of the history of child psychiatry also age, mental retardation, possible developmental lan- fail to mention childhood autism [12, 51, 25]. guage disorder or severe early social deprivation. There has been much speculation about the possible This is Uta Frith’s analysis of the depositions of 29 disabilities of“wolf children”,that is children discovered witnesses in the legal case of Hugh Blair, son of a Scot- in the wild, who had supposedly been reared by wolves tish landowner, who in 1747 at the age of 39 appeared in or other wild animals [59].When found,they were mute, an Edinburgh court for a decision on his mental capac- tended to walk on all fours, were insensitive to cold, and ity to contract a marriage [31, 20]. His younger brother ate only raw foods. Numerous cases were described over successfully petitioned for annulment of the marriage to time,especially in India.Ireland in 1875 thought most of gain his brother’s inheritance. In a beguiling book, enti- them were idiots, who had been abandoned by their im- tled “Autism in History”, written with the social histo- poverished parents and that the idea that cruel animals rian Rab Houston, Frith convincingly argues for a diag- would spare the innocents was an “agreeable myth”[37]. nosis of autism, despite the lack of a developmental But Malson in 1972 dismissed this notion because,he ar- history.All we know is that Hugh Blair had not been ex- gued, how could such backward children survive on posed to early privations or serious illnesses. The their own in the wild [53]? He preferred Tredgold’s idea deficits in his social relationships included tactlessness of “isolation dementia” [72]. and abnormal gaze,although in adult life he was friendly The most celebrated enfant sauvage was Victor, “the and affectionate. There was severe retardation and ab- wild boy of Aveyron”, found naked and covered with normality of language, including echolalia (“he was in scars, in the woods in 1798 aged about 11 or 12. An ear- the habit of repeating simple phrases”) and, while able lier sighting and failed capture when he was 6 is de- to write out the Lord’s prayer faultlessly,when examined scribed by Jean Itard [53].Victor’s fame rests on the ded- on the catechism at school, he would always reply with icated, ingenious and affectionate attempts over a 5 year both question and answer. His obsessive and repetitive period of this young French physician to educate and behaviour included odd motor mannerisms, collecting humanise him [53, 42, 47]. feathers and sticks, always sitting in the same seat in At first, Victor’s gaze was shifting and expressionless; church and insisting that domestic objects retained he was insensitive to loud or pleasing noise and indif- their same place.At the time he was described as lacking ferent to smells,but sniffed at every object; he made only common sense and having a “silent madness”. guttural sounds; did not imitate; attended only to ob- Until then, John Haslam had been credited with antic- jects he wanted; could not climb a chair to reach what he ipating Kanner by 140 years [73].In his “Observations on wanted; and he rocked to and fro.He seemed profoundly Madness and Melancholy” published in 1809, in a chap- melancholy but had outbursts of laughter and re- ter entitled “Cases of insane children”,Haslam described sponded with joy to the sun,a bright moon,the snow.He a boy of nearly 7 who had had infantile convulsions, se- was gluttonous, although at first eating only acorns, vere measles as well as a small pox inoculation. He was potatoes and raw chestnuts. Itard devised a carefully slow to walk and very late to talk.In hospital he was rest- graded behavioural programme whose goals were first, less and inattentive, but curious about his environment, to help Victor form social attachments, then to awaken and he lied to cover up misdeeds.He had a poor grasp of his nervous sensibilities,to extend the range of his ideas, distance, attempting to reach the ceiling. When seen and finally to induce speech via imitation. Victor had a again at 13 his language had progressed but he spoke of good memory and a great sense of order. Within 9 himself in the third person and pulled his mother’s arm months he was able to match letters of the alphabet. At to gain her attention. No echolalia or abnormal gaze are this time he had one convulsion. Five years later, he had recorded.He recognised Dr Haslam and was friendly.He learnt to distinguish emotions expressed by different was solitary (watching other boys at play,but never join- tones of voice; he had become genuinely affectionate ing in) and had a number of obsessive preoccupations and loved helping people; he enjoyed his lessons; used (he loved going to church,without understanding its pur- objects imaginatively; could bring objects whose names pose; he never used a closet, only a bowl as when he was were written down and could ask for things in primitive in hospital; he talked only about toy soldiers and loved writing, but his spoken language never progressed be- martial music) [26].Vaillant,rightly,suggested the possi- yond meaningless monosyllables. bility of a post-encephalitic syndrome [73]. Itard thereafter devoted his life to the education of Henry Maudsley in his 1879 edition of The Pathology mute children, both deaf mute and children with hear- of Mind,includes a chapter on “The insanity of early life” ing, and he devised teaching methods still relevant to- which was greatly respected by Kanner.Although Maud- day in the education of children with autism and with sley mentioned affective insanity and moral insanity, other language and intellectual disabilities. S. Wolff 203 History of autism

John and Lorna Wing held “there can be no doubt verely retarded children, whose clinical picture is ob- that Victor was autistic” [78, 81]. This view is shared by scured by prolonged institutionalisation. One mute boy Uta Frith [20] and others. Itard worked for over 20 years once uttered a complete and pertinent sentence under with 40 language disabled children whom he distin- stress, a feature of autism described by Kanner [41]. guished from the mentally retarded.A late report, which Kanner may not have seen [7], suggests that some (mute children without deafness or mental retardation, with The contributions of individual clinicians poor peer relationships, specific difficulties with pro- and researchers nouns and a fugitive gaze) might now be diagnosed as within the autistic spectrum but without all the features Eisenberg, in his preface to Kanner’s writings, described Kanner described (there was no mention of stereotypic, him as self-educated, irresistible to children like a pied obsessional behaviours) and some may have had devel- piper,and recalled his clinical interviews as “moving hu- opmental language disorders. Victor may have been man encounters” [44]. He was clearly a wonderful clini- autistic or dysphasic [6] but the picture is obscured by cian, and widely read. His papers are extraordinarily his past total social isolation, which we now know can well written and, unusual for the time, well referenced. cause “quasi-autistic patterns” when it begins in very In his original description, in 1943, of a unique syn- early infancy [20, 66]. drome, not previously identified: “Autistic disturbances Moreover, in his history of the mentally retarded, of affective contact”,he stressed its emotional basis,now Kanner described Itard’s work with Victor without men- upheld by Peter Hobson [30], and its presence since the tioning the possibility of early infantile autism [42]. It is beginning of life. He thought it was probably rare and also surprising that Itard, that superb observer, did not may in the past have been confused with feebleminded- single out this syndrome among the mute children he ness or schizophrenia.He listed as the crucial symptoms saw. Perhaps the fact that he concentrated on children an “extreme autistic aloneness”; abnormal speech with without mental handicap may help to account for this. echolalia, pronomial reversal, literalness and inability to Of the syndromes allied to early childhood autism use language for communication; and monotonous, the most clear cut is Heller’s “Dementia Infantilis” [27, repetitive behaviours with an “anxiously obsessive de- 36], a condition now recognised as disintegrative disor- sire for the maintenance of sameness”. Three of his first der and known to be very rare [18, 52]. Heller had seen 11 children were mute. From the start he noticed the 28 children with a very similar symptomatology among skewed sex ratio (3 of the 11 were girls); the enlarged a much larger group of mentally retarded children.They heads of 5 of the 11, now rediscovered [3]; and, although had developed normally until their 3rd or 4th year when he wavered about this in later years, he stressed the dis- a regression occurred affecting first mood with irri- tinction from schizophrenia, later demonstrated by tability, weepiness, anxiety, negativity and temper out- Kolvin [45, 46]; as well as the constitutional basis of the bursts, followed by apparent hallucinations and a pro- disorder, now amply confirmed. The children, he wrote gressive dementia so that within a few months all “have come into the world with innate inability to form language and self care skills were lost, there was incon- the usual, biologically provided affective contact with tinence and, while motor functions were preserved and people” [41]. He considered the disorder to be a psy- there were no abnormal neurological signs, the children chosis, and indeed this view was still held by Rutter in had tic-like movements. But their facial expression re- his foreword to the 1973 volume of Kanner’s writings mained intelligent, their gaze clear and they appeared to [64]. On follow-up, he found the children’s solitariness be attentive to their surroundings.At follow-up, they re- and language to improve with age [44]. mained demented but, because they looked so intelli- Kanner described the parents as highly intelligent, gent,many of their parents never gave up seeking a cure. preoccupied with abstractions of a scientific, literary or Heller tells us he saw only a single case of schizophrenia artistic nature, limited in genuine interest in people. in 35 years of practice: a girl aged 5.He too,excellent ob- Later he wrote: “There is a resemblance between their server as he clearly was,does not describe early infantile make-up and that of their children, except that their autism. aloofness has not reached the gross proportions of a Less convincing is De Sanctis’ Dementia Praecocis- psychotic illness” [44]. The special features of parents of sima [13, 14]. Of the 3 children aged 6, 7 and 10 years he autistic children have also now been amply confirmed described, one seems to have had mental retardation by comparative studies [86,3] and strengthen the notion with autistic features and two had been traumatised and of a genetic causation.Kanner thought that mild autistic deprived. traits may lead to success in a “non-psychotic existence”. There is also an account of what might be symptoms What he failed to spot was the children’s selective refer- of autism by Earl in children diagnosed as having “prim- ral: 4 of the first 11 had fathers who were themselves psy- itive catatonia of idiocy”[15].Severe motor stereotypies, chiatrists. Over the next 30 years Kanner and Eisenberg self-injurious behaviour and mutism occurred in se- followed up more than 100 affected children. They dif- 204 European Child & Adolescent Psychiatry (2004) Vol. 13, No. 4 © Steinkopff Verlag 2004 fered from children with aphasia, later confirmed by Autism Diagnostic Interview [48] and the Autism Diag- comparative studies [6] and language competence at 5 nostic Observation Schedule [50] now enable re- years was a good prognostic sign. Where Kanner failed searchers to define their study populations accurately was to stress the contributory effects of parental lack of while circumventing the changing definitions of DSM warmth on constitutionally predisposed children. And and ICD over the years.A summary of Rutter’s views on this was congruent with the then current ethos of parent autism appear in his recent Festschrift [65]. blame which was to last for some decades. We should Stella Chess was the first to discover that autism can never underestimate the effects on scientific thinking of be associated with neurological disease, in a series of the prevailing beliefs and culture. children with congenital rubella [9]. Curiously, in his comprehensive literature reviews, Kolvin’s comparative studies distinguishing early Kanner made no mention of Hans Asperger. This Vien- childhood autism from childhood schizophrenia,by age nese paediatrician in 1944 described 4 cases of “autistic of onset, phenomenology, family history and associated psychopathy of childhood” and summarised the fea- symptoms,are now rightly regarded as classics in the tures of other similar children [1, 19]. They were often history of autism [45, 46]. able, some with extraordinary gifts in mathematics or Beate Hermelin’s innovative controlled studies to- natural science with creative,original modes of thinking gether with Neil O’Connor [29] of the psychological fea- and objective self-appraisal. But their social and emo- tures of children with autism, culminated in her more tional relationships were poor and they were sometimes recent explorations of the “savant” phenomenon [28] malicious. Themselves highly sensitive, they lacked feel- and set the scene for the ground-breaking studies of Uta ings for others, had stereotypic behaviours as well as Frith [19, 20] and Francesca Happé [24] of the psycho- pervasive special interests and were clumsy. Language logical deficits of autism and now, via brain imaging, of acquisition was not usually delayed, but language use their neurological basis [20]. was idiosyncratic. The condition could be recognised in Lorna Wing, who put Asperger’s syndrome on the early childhood and was life long. Later work adjust- map in 1981 [80], has greatly contributed over the years ment was often good but the social handicaps endured. to the epidemiology of autistic conditions [82]; to Asperger stressed the constitutional basis of the condi- changing concepts of autism (we owe the “Autistic Spec- tion: many parents had similar personality traits,and he trum”largely to her influence); to the birth of parent or- suggested that these might be an extreme variant of the ganisations; to the literature on autism for parents [79]; male intelligence [19]. Baron-Cohen has recently pro- and to the diagnosis,treatment and care of affected peo- vided evidence that this could indeed be so [4]. ple and their families. Asperger’s work was less systematic than Kanner’s Finally,Gillberg’s wide ranging studies have added to and his prognostic conclusions impressionistic. His lit- our knowledge of the epidemiology, genetics, outcome erature review too was incomplete. He failed to mention and clinical management of children with autistic con- the marvellous German account of 6 cases exactly like ditions and have helpfully clarified the diagnostic fea- his own,described by Ssucharewa as “schizoid personal- tures of Asperger syndrome [21, 22]. ity of childhood”in 1926 [71, 84]. But he offered devoted care and treatment to affected children in a special unit and had much to say about how they can best be edu- Changes in the concept and definition cated [19]. of the disorder over the years Although van Krevelen [75] and others [85] at- tempted to put Asperger’s work on the map, it was not Kanner defined autism narrowly and was dismayed by until Lorna Wing’s seminal paper of 1981, that As- its widening “almost over night”to include children with perger’s syndrome as we now know it was born [80]. isolated autistic symptoms on the basis of brain damage Michael Rutter’s comparative studies in the 1960s and mental retardation. Suddenly, in the 1950s, “the validated the syndrome and features of autism [62, 68] country was populated by a multitude of autistic chil- which a previous working party [10, 11] had not dren” [44]. Moreover, in the 1950s and 1960s, especially achieved; uncovered the high frequency of epilepsy at in the US,schizophrenia was everywhere and in children adolescence and confirmed the prognostic significance it included autism [5]. Schizophrenia was often held to of early language and intelligence [63]. In a landmark be psychogenic [49] and the psychoanalytic theories study with Bartak [67] he found behavioural approaches which then prevailed, often led to wasted and painful the best teaching method and with Pat Howlin he evalu- years of expensive psychotherapy for affected children ated a home treatment programme for young children and their parents. with autism [35]. But most important, his twin and fam- As a result of Rutter’s and Kolvin’s studies in the ily studies proved once and for all that autism has a 1960s and 1970s,the concept was again restricted only to strong genetic basis and that an excess of relatives have widen once more in the 1980s. lesser variants of the autistic syndrome [17, 3]. The This wider concept took off from Wing and Gould’s S. Wolff 205 History of autism

[82] epidemiological study which was based on children concepts of autism and the education and treatment with special educational needs and included many with offered to affected people. brain syndromes and learning disabilities. From a ther- The period of long-term institutionalisation for psy- apeutic stand point, this was helpful because when such chiatric patients and for those with learning disabilities children have autistic features, they benefit from exactly endured well into Kanner’s lifetime and he realised that the same educational and therapeutic methods as other this “cut short any prospects of improvement” [44]. But children with autism. It was also helpful that the US De- even Kanner, who always stressed the constitutional ba- velopmental Disability Act of 1975 [74] included them sis of autism, was caught up in the era of psychoanalysis along with other people with severe and chronic devel- when all childhood disorders were attributed to poor opmental disabilities and mental retardation,because of parenting, and held that this was a contributory cause. the similarities of their administrative needs for finan- Reviews of the education and treatment of autistic cial support and for special educational services. children [33, 58] make clear that, while the behavioural In addition, Wing’s rediscovery of Asperger’s work adjustment of children with autism can be much im- [80] drew attention to high functioning autism with proved with early intervention, there is no effect as yet which Asperger syndrome, as currently defined, is often on long-term prognosis. Interventions are also depen- equated [19, 24, 34], and this culminated in the birth of dent on the administration of medical and educational the autistic spectrum which has been useful both clini- services. In the US, for example, where managed care cally and as a basis for genetic and other studies. sets limits to the intensity and duration of psychiatric More debatable is the widening of the concept to in- treatments,over 50% of children with autism are taking clude exceptionally gifted people with Asperger syn- drugs or vitamins, a situation very different from that in drome, such as philosophers and mathematicians, for the UK. Here the educational policy of “inclusion”, example, Wittgenstein [83] and the Nobel prize winner, whereby children with disabilities attend main stream John Nash prior to his schizophrenic illness [57] whose schools wherever possible,coupled with the widening of therapeutic needs, if any, are very different. the concept of autism to include more able children, means that more affected children are now expected to cope, with special help, in ordinary classrooms and that Ideas once held with conviction, more teachers are learning about the needs of autistic which proved to be unfounded children [39]. The increased awareness of teachers, doctors and the The first, and most malignant was that autism is caused general public as well as the widening of the concept by poor parenting, when now we know that the unusual have contributed to the fact that far more children are features of parents of autistic children are due to shared now recognised as having autistic spectrum disorders genes [65].The second is that autism is among the group and the estimated prevalence of “autism” has increased of schizophrenias,disproved by Kolvin [45,46].Here the over the years from around 4–5 per 10,000 to around 6 idea that autism is a developmental disorder rather than per 1,000 children [8]. The greater awareness of the con- a psychosis has been helpful. The third, that autistic dition is largely attributable to the activities of parent symptoms are secondary to a developmental receptive organisations. language disorder,once held by Rutter,was disproved by These started in the 1960s and are now world wide. his own researches into autism and language disorders They provided information for policy makers and the [6]. The fourth, that the incidence of the condition in public and established residential and day schools for siblings of affected children is not raised, was disproved children with autism, implementing evidence-based by comparisons of the population and family incidence best practice [76]. In the 1970s and 1980s provisions of autism [65]. were made for affected adults too and this coincided with the closing of long stay hospitals.In the UK,at least, few people with autism would now be found in institu- Socio-political shifts and research findings tions. have radically changed the understanding As parents of autistic children found their voice, and of autism and the care and treatment offered the boundaries of autism extended to include more able to affected people people with Asperger syndrome, published accounts by parents and affected people themselves enormously ad- In a review of child and adolescent psychiatry over the vanced the understanding of the general public, of pro- past 50 years, Eisenberg [16], recollecting that he found fessionals in education and health care, and of affected 3 autistic siblings among 131 autistic children but failed families. Among the best publications of this kind are to spot the genetic cause, stressed that our conclusions Liane Willey’s “Pretending to be Normal” [77], Kate always reflect prevailing concepts and ideas. Cultural Rankin’s “Growing up Severely Autistic” [61], Temple shifts as well as research findings have influenced our Grandin’s “An Inside View of Autism” [23], and Luke 206 European Child & Adolescent Psychiatry (2004) Vol. 13, No. 4 © Steinkopff Verlag 2004

Jackson’s “Freaks, Geeks and Asperger Syndrome”, a perts, parents of affected people and representatives of touching account of his own predicament by an adoles- parent organisations, found no link between MMR vac- cent boy [38]. cination, bowel disease and autism, while of course Increasing awareness of autism has led to many in- recognising that a negative association can never be novative interventions and wider access to good care proven. This report has been largely ignored by the me- and education. But increasing public debate about dia and parent organisations and, in the present “post autism has also had its down side.Desperate parents can modernist” climate of “lay epidemiology”, distrust of be seduced by untested and often expensive treatments science, doctors and politicians, government reassur- which later prove to be ineffective. They include facili- ances have so far been ineffective [70, 60]. tated communication, auditory integration, “holding” therapy, and a variety of dietary interventions [32, 56, 33]. Conclusions Most worrying in the UK has been the furore over MMR vaccination. Parent organisations, the press and Exceptional clinicians such as Kanner and Asperger television were persuaded by a very small number of opened our eyes to clinical syndromes previously un- otherwise undistinguished doctors and psychologists seen. But, even at a time when most developmental dis- that the triple vaccine induces bowel disorder in a pro- abilities were relegated to the general category of men- portion of children and that this can cause autism. De- tal deficiency with the implication of a hopeless spite lack of evidence,the increasing prevalence of autis- prognosis and institutionalisation as the outcome,an in- tic disorders has also, by some, been attributed to novative therapist like Itard devised a method of reme- changing vaccination policies. While the originators of dial education and personal care that is still relevant to- this theory lay no claim to scientific proof for their be- day. Cultural and political shifts have profoundly liefs, they have, via the media, persuaded many parents affected how we view autism and its boundaries, the of children with autism to see their past vaccination as range of ability levels of people now included as within its cause and to seek legal redress and compensation the autistic spectrum, and the range of interventions from the UK government. Many parents in the general offered. Some of these are still untested and others re- population now refuse the triple vaccine for their young main popular despite their proven ineffectiveness. But children, lobby for the introduction of single vaccines, on the whole, the power of parent organisations and the and thus put the population at risk of serious childhood destigmatisation of disabilities, at least in childhood, infections. A recent review of the prevalence and causes have greatly improved the services for autistic people of of autism by an MRC committee [55], composed of ex- all ages.

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