AUTISM - Rehabilitation Council of Indiarehabcouncil.nic.in/writereaddata/autism.pdf5 note, while Kanner published his paper in 1943, Hans Asperger in Austria independently published

AUTISM

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Indroduction

Abhi is eight and has just joined a school. His father carries a packet of glucose biscuits

which he keeps feeding him to get him to enterthe school. Once in the school Abhi cries andmakes a high-pitched screeching noise for a goodone hour after his father leaves. He “stims” withhis fingers and is unresponsive to his teachers’instructions. Abhi prefers to sit away from the otherchildren, and spends much of the day with hishands over his ears, unaware of the activities in theclass.

Taru is also eight. Unlike Ahbhi who doesnot use speech, Taru is very vocal. She likes “talkingto” the teachers about human races – Mongoloid,Negroid, Caucasian and so on, and the singerMukesh: her favourite topics. But she does notrecount events that take place at home, nor doesshe recount events at school to her parents. She isat a loss at what to do at recess, tries to interactwith the other children on the playground bytalking about Mukesh and Caucasians, and endsup getting teased instead. She excels in her lessons,has no friends, and the bullying at school andsubsequent stress levels are so high that her parentsare concerned whether she might have to drop outof school in a couple of years.

Chandru is a manager in a nationalized bank.He is handsome, dresses well in a slightly old-fashioned fuddy-duddy sort of way, and is a post-graduate who has held postings in different parts

Chapter 1

Introduction and Historical Overview

of the country. Chandru is married and has twosons who are studying at a leading public school.Chandru is viewed as somewhat odd andsometimes ‘weird’ by his colleagues, and asexasperating and rigid by his brothers and sisters.His wife sees him as eccentric but a good man, agood father, and a good provider.

Abhi, Taru and Chandru are all very differentand they all have autism. Autism affects people instrikingly different ways despite the similarities inthe core impairments. However, in each individualwho has autism, the symptoms of autism vary, inseverity and expression.

Autism is one of five developmentaldisorders included under the umbrella of thePervasive Developmental Disorders. In addition toautism, other disorders in this family are Asperger’sSyndrome, Rett’s Disorder, ChildhoodDisintegrative Disorder, and when full criteria forone of the above disorders is not met, a child maybe diagnosed with Pervasive DevelopmentalDisorder-Not Otherwise Specified (often writtenas PDD-NOS). Autism is characterized by deficitsin social interaction and communication, andunusual and repetitive behaviour. Cognitiveabilities in people with autism vary between thosewith average to above average intelligence, toborderline and mild mental retardation, and otherswho function within the moderate to profoundlymentally retarded range. An oftentimes severelyhandicapping condition, autism manifests at birthor within the first two-and-a-half years of life.

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Many autistic children are perfectly normal inappearance, but spend their time engaged inpuzzling and disturbing behaviours that aremarkedly different from those of typicallydeveloping children. They may show little or nointerest in people including their parents, andpursue repetitive activities with no apparentpurpose. They have often been described as living“in a world of their own”. Some, but not all peoplewith ASD are non-verbal. Some autistic individualsmay be remarkably gifted in certain areas, such as,music or mathematics, as depicted in the film RainMan, although this phenomenon (often calledsavants or savant syndrome) is relatively rare. Allof them need help.

An understanding of the current status ofautism in India must take into account theprogression of awareness and understanding ofautism and references to the disorder over the yearsin published literature.

Historical OverviewPeople often state that autism ‘happened’

only in the twentieth century. But, just like manydisorders which we identify now, autism is believedto have always existed. It was just not identified asa specific disorder. References to individuals whosedescriptions are similar to the characteristics ofautism have existed through history. Amongst thesewere the ‘holy fools’ who were a much veneratedpeople in ancient Russia, dating back to thesixteenth century. These individuals were reportedto be eccentric, given to parroting, with stereotypicspeech and actions, obsessive interests, and lack ofsocial awareness. Late eighteenth century accountsof the ‘Wild Boy of Aveyron’ discovered in a forestin France, who was later named Victor, offers us adescription that is remarkably similar to Kanner’sa couple of centuries later. From the accounts ofVictor that are available, there is evidence of a

serious impairment in reciprocal social interaction,impairment of sensory attention, lack ofimaginative play, evidence of stereotypes andintellectual impairment.

However, while autism has always existed, itis only in the last sixty years that it has been givena name, and described by its very specificcharacteristics. The word ‘autism’ was first usedby Bleuler, a Swiss psychiatrist in 1911 to refer toschizophrenia. Then, over 50 years ago, a youngboy named Donald visited the child psychiatrist,Leo Kanner, in his office at the Johns HopkinsUniversity in Baltimore. Kanner was “…struck bythe uniqueness and peculiarities which Donaldexhibited. He could, since the age of two-and-a-half years, tell the names of all presidents and vice-presidents, recite the letters of the alphabetforwards and backwards and flawlessly, with goodenunciation, rattle off the Twenty-Third Psalm. Hismemory was phenomenal. Yet he was unable tocarry on an ordinary conversation. He was out ofcontact with people, although he could handleobjects skillfully. The few times when he addressedsomeone–largely to satisfy his wants–he referredto himself as ‘You’ and to the person as ‘I’. He didnot respond to any intelligence tests, butmanipulated intricate form boards adroitly”(Gillberg & Coleman, 1992). Over the next fewyears, Kanner would see ten other children whowere similarly self-absorbed and who had severesocial, communication, and behavioural problems.

In 1943, Kanner published a paper applyingthe term ‘early infantile autism’ to this group ofchildren, characterized by withdrawal and withritualistic behaviours, and gave medical literaturea window to this complex and enigmatic disorder.Children with the symptoms originally describedby Kanner are now the minority of those diagnosedwith autism, as the quest to understand thiscondition has expanded into a field of its own. Of

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note, while Kanner published his paper in 1943,Hans Asperger in Austria independently publisheda study on autism in 1944. This work was nottranslated into English until 1981, but it is clearthat Kanner and Asperger, though totallyunconnected to each other, wrote about the samesyndrome in two different countries.

Subsequent to the publication of his paper,Kanner opined in print that the parents of childrenwith autism were ‘highly organized, professionalparents, cold and rational who just happened todefrost long enough to produce a child’. He therebyintroduced the concept of the ‘refrigerator mother’.This theory was expanded on by the psychologistBruno Bettelheim, and it impacted for many yearsto come. The way parents of children with autismwere viewed. Bettelheim believed the mothers ofautistic children were highly intelligent, cold, andunemotional, and that the best treatment was toremove children from these supposedly affection-deprived homes, thus establishing a facility knownas the Orthogenic School.

The movement against psychogenic theoriestook off in the early 1960s and was led by parentsof the affected children. Many of them wereinvolved with issues related to autism in aprofessional capacity as well. Bernard Rimland, apsychologist in the US, published ‘InfantileAutism: the Syndrome and its Implications for aNeural Theory of Behaviour’ in 1964. Rimlandlater founded the Autism Society of America in1965. Lorna Wing, a psychiatrist in the UKpublished ‘Early Childhood Autism’ in 1966. Infact, the movement for autism worldwide,particularly in the area of services, has beenpioneered by parents of children with autism incollaboration with exceptional professionals suchas Sybil Elgar in the UK and Eric Schopler in theUS.

While Bettelheim’s notion of the ‘refrigeratormother’ and the belief that autism is caused by cold,career oriented parents has been discarded todayin the light of decades of research, theconsequences of this notion have had worldwideimpact and linger even today. It was many yearsbefore researchers gained an understanding ofAutism as a developmental disorder of biologicalorigin. In much of the developed world, barring afew persisting exceptions like France, autism is nowacknowledged as a disorder that is not ofpsychological origins. However the same cannotbe said of India.

Historical Overview of Autism in IndiaIn general, relatively little has been written

on autism in developing countries as comparedwith what has been published on autism in NorthAmerica and Europe. However, of all thedeveloping countries, India has by far the greatestwealth of research articles, with over 70 articles,chapters and books which relate to the topic.Interestingly, much of this literature appears to gounnoticed by Indians, and there have beenconsistent references to many of these publicationswith comments such as “probably one of the initialattempts in Indian literature to describe anddiscuss” the disorder. In addition to these publishedarticles, there have been smaller, unpublishedresearch studies, several of which the nationalautism organization, Action For Autism, has beeninvolved with. This section will present a briefhistory of autism research and the autismmovement in India.

The earliest mention of autism in Indianscientific literature may date back to 1944, from aViennese pediatrician named A. Ronald workingin Darjeeling. Ronald presented an overview of thedetection, causes, types and treatment of what hetermed ‘abnormal children’ in the very same year

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as Kanner’s hallmark publication. The first timethe term “autism” appeared in the Indian literaturewas in 1959, and a half-dozen publications appearedthrough the 1960s. Beyond that there was limitedknowledge about autism in the medicalcommunity.

In the late 1970s there were a few centres inIndia that were diagnosing children with autism.A study conducted in the mid-1990s found thatmany of the older adolescents and young adultswho received a diagnosis of autism could be tracedto just a few professionals, and those with diagnosesbefore 1980 had received the diagnosis from abroad(Daley, 2004). Much of the diagnosis wasdependent on individual professionals, andknowledge amongst the wider medical communityremained limited. There remained a general lackof knowledge of the existence of autism, so thatmost had not even heard of the disorder, nor did itreceive mention in most medical textbooks at thattime. By the early 1980s there began a slow growthof ‘awareness’ of autism among some professionals,such that they were aware of the existence of thiscondition. However, it was not necessarily a trueunderstanding in that professionals’ knowledge wasmarked by the belief that it was a form of mentalillness or that it was a variant of mental retardation.This is not to imply that mental retardation orpsychiatric illnesses are in any way ‘inferior’ toautism, but to simply highlight that this confusionprevented individuals with autism from accessingtreatment that was appropriate to their needs.

From the late 1980s through today, autismin India has experienced an intense period ofactivity relative to the previous decades. The releaseand subsequent Academy Award for the film RainMan in 1988 brought autism to the consciousworld of the educated in India, just as it did in manycountries. Around the same time, one or two

parents in India took the initiative of writing inthe media about autism, speaking to students, andcreating awareness in the community. In 1991, aparent got together a few like- minded parents andfounded Action For Autism (AFA), to advocate forchildren and adults with autism and their families.In 1994, a school, Open Door, a specialist schoolfor autism was started.

In 1994, Action For Autism (AFA) started afull time one-year teacher training course in Delhi.AFA also started publication of a periodical ‘AutismNetwork’ to share developments in the field andto act as a forum for discussion.

The Karnataka Parents Association forMentally Retarded Children (KPAMRC) followedwith a one-year training in 1996. In October ofthe same year AFA led a delegation of parents ofautistic children from throughout India to meetthe Secretary of Ministry of Welfare and to lobbyfor inclusion of autism in the Persons withDisabilities (Equal Opportunities, FullParticipation and Protection of Rights) Bill. AFAfollowed this up in the following months withmeetings with other policy makers includingthe Joint Secretary of Ministry of Welfare, theMinister of State for Health and Family Welfare,and the Lieutenant Governor of Delhi.

Starting May 1998, Action For Autismconducted an awareness study in conjunction withthe Rajiv Gandhi Foundation. This projectdistributed packets of information on autism tomore than 1,000 paediatricians registered with theIndian Academy of Paediatricians throughout thecountry, including brochures to pass along toparents of newly diagnosed children. Referralsfrom paediatricians skyrocketed following thiscampaign.

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By the late nineties a few autism specificorganisations started off in different parts of thecountry, as well as a few schools, chief among themAsha, Ashiana, Communication DEALL,Development Centre for Exceptional Children,Priyanj and We Can. ‘Forum for Autism’, a parentsupport group started in Mumbai.

In 1998 Action For Autism held a trainingby a visiting international expert, the first of a seriesof still continuing events. Between 1998 and 1999a series of articles on autism were released to themedia to create awareness.

In 2000, a boy with autism from Bangalore,Tito Mukhopadhyay, published his first book,Beyond the Silence: my life, the world and autism. Thebook includes writings from when he was betweeneight and eleven years old, and broughtinternational attention to Tito and his mother’smethods for teaching him.

In 1998, AFA approached the RCIhighlighting the need for a teacher trainingprogramme specific to Autism SpectrumDisorders. Continued efforts culminated in RCI

introducing a Diploma in Special Education(Autism Spectrum Disorders) in 2003.

By this time a few more Parent organisationsfor autism had come into being, among themAutism Society West Bengal, Jyot in Goa, CATCHin Bhubaneshwar and Pathways in Pune. At thetime of writing there are around 20 small schoolsaround India that specialise in teaching chidlrenwith Autism.

Recently, internet listservers have expandedthe diaspora of Indian families with autisticchildren to dozens of countries around the world.

As these milestones illustrate, awareness ofautism in India has experienced tremendousgrowth in less than a decade. Growth has occurredin numerous domains: diagnosis, treatment andeducational options, parental involvement,vocational options, human resource development,and legislation. The status report of autism in Indiathat follows is able to highlight only some of theseareas and cannot provide the depth or breadth thatthe topic deserves, but aims to provide an overviewof the disorder within the cultural context of India.

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Chapter 2

Prevalence and Incidence

Once considered rare, the currentunderstanding of autism is that it is in fact

one of the more common developmentaldisabilities. The terms ‘prevalence’ and ‘incidence’are sometimes used interchangeably, but in fact,they have distinct meanings. The ‘prevalence’ ofautism typically denotes the estimated populationof people who are autistic at any given time, while‘incidence’ of autism refers to an annual diagnosisrate, or the number of new cases of autismdiagnosed each year.

The first epidemiological study of autism byVictor Lotter in 1966 put the number of thoseaffected at 4.5 per 10,000. For some years this wasthe most cited statistic, based on large-scale surveysconducted in the United States and England.Subsequently, several other studies over the yearshave arrived at varied numbers, noting an increase.Interestingly, studies done by Gillberg in 1980, 1984and 1988 indicated that the prevalence of autism,as described by Kanner, had not increased, and thatthe increase in the number of children affected byautism was due to more children with concomitantmental impairment receiving a diagnosis of autismas a result of better detection of cases.

Studies by different individuals over sameperiods of time have often given different results.In recent years the question of prevalence hasreceived considerable public attention within thefield of autism, as researchers debate whether theprevalence is increasing. One factor believed to bepotentially contributing to this increase in autism

prevalence is diagnostic substitution. It is of coursedifficult to conclusively determine whetherindividual children have switched classifications orwhether a child might receive another diagnosisin another time. Other factors cited have beendelivery of the MMR vaccine, and variousenvironmental factors.

The full debate of this issue is beyond thescope of this report, but the following data arepresented to facilitate a brief discussion.

Prevalence and Incidence Statistics about Autism

• Prevalance of Autism: Between 1 in 500 (2/1,000) to 1in 166 children (6/1,000) have an Autism SpectrumDisorder (Center for Disease Control).

• Prevalance Rate: Approx. 1 in 500 or 0.20% or morethan 2,160,000 people in India.

• Incidence Rate: Approx. 1 in 90,666 or 11,914 peoplein India.

• Incidence extrapolations for India for Autism: 11,914per year, 250 per month, 57 per week, 8 per day, 1.4per hour.

• Autism is four times more prevalent in boys than girlsin the US (Autism Society of America).

• Autism is more common than Down Syndrome,which occurs in 1 out of 800 births.

• The rate of incidence of autism is increasing 10-17%per year in the US (Autism Society of America).

• Prevalence of autism is expected to reach 4 millionpeople in the next decade in the US (Autism Societyof America).

Adapted from:http://www.wrongdiagnosis.com/a/autism prevalence.htm

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There have been no epidemiological studiesof autism conducted in India, nor in anycomparable region of the world in order to providea definitive estimate of either prevalence orincidence. Most estimates are based on population,given that significant differences in prevalence havenot generally been observed in different regionalareas. Although, there are no studies from India,the numbers are likely to be similar. Estimates of15 per 10,000 are now typical rising to 64 per 10,000or even higher if the entire spectrum is included.Adults continue to be under-represented inpopulation estimates of prevalence. Many adultson the spectrum in India continue to be wronglyconsidered to have schizophrenia or personalitydisorders. Despite research suggesting otherwise,early myths continue to persist in India today.

Autism knows no racial, ethnic, or social boundaries.Action For Autism (AFA), has encountered parentsof autistic children from across South Asia who includephysicists, farmhands, politicians, auto-drivers,industrialists, domestic help, royalty, kabadiwallahs,construction labour, physicians, street vendors,teachers, electricians, and scientists, among others. Inaddition, children with autism are found in happy,well-adjusted families, just as much as in familieswith unresolved emotional conflicts.

In sum, these numbers make it clear thatautism is not at all rare by any definition of theword. However, the majority of people with autismin India have not been diagnosed and do not receivethe services they need. This problem occurs inmany countries, but is especially true in Indiawhere there are still a great number ofmisconceptions and misinformation, as well as atremendous lack of awareness about autism amongvarious professionals, who may either misdiagnoseor under-diagnose the condition. What complicatesthe issue further is that autism is sometimes noteasy to identify. While we become more proficientin understanding and identifying individuals withautism, the reality is that some people will neverreceive a diagnosis. Chapter 3 discusses issuessurrounding diagnosis and early identification ofautism.

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Chapter 3

Diagnosis and Early Identification

Historical Overview of Diagnosis in India

Historically, one of the major difficulties facedby parents of children with autism in India

has been obtaining an accurate diagnosis. In the1970s and earlier, diagnosis of autism was rare.Barring a few stray cases, often children whoreceived a diagnosis did so from abroad. In fact,until about twenty years ago, there were a merehandful of doctors even in the larger cities whoaccurately identified a child with autism. Asevidence of its absence from the medicalconsciousness, autism rarely appeared in medicaltextbooks, and as a result many doctors were notfamiliar with the term. Even information aboutmental retardation often left much to be desired.In an awareness campaign across north India ledby the NGO Jan Madhyam in the late 1980s, manyfamilies reported that doctors had told them thattheir child (who had mental retardation) would get‘okay’ with time. Often the doctors had not actuallygiven a diagnosis either, and the families came tounderstand their child’s condition as a result of thatcampaign. In such a scenario, it was not surprisingthat most doctors professed not to have heard aboutautism at all. In any case, doctors were notspecifically trained to recognize autism early, whichis essential in order to obtain the maximum benefitsof intervention.

In the 1980s, pressures of ‘early schooling’,where children were expected to be in nursery andkindergarten schools by two and three years of agebegan to have an impact on identification of autism.

Once in the presence of other children, differencesin development showed up more readily. Schoolswould often alert parents that their child did not‘enjoy listening to stories’, something that was seenas an almost universally enjoyable activity. Teachersmight note that a child did not play with the otherchildren, or that he just walked around the classand could not sit in one place. One of the factorsthat contributes to delayed diagnosis of autismperhaps is that typically developing children mayoften exhibit the same behavioural characteristicsthat lead to a diagnosis of autism, such as delay inthe development of speech, ‘shyness’, ‘irritability’and so on.

If sufficient concern is expressed by theschool, a parent might have taken their child to apaediatrician, only to be reassured that their childwas just ‘slow’. Most would take the paediatrician’sword and carry on waiting for things to change.Some, however, unsatisfied by this reassurancewould take the rare step of visiting a psychologist,to perhaps be told their child is ‘mentallysubnormal’. Convinced that their child did not fitthe typical picture of mental retardation, somewould then have visited a psychiatrist, to be toldthat their child had attention deficit disorder, andmust be put on medication to control hyperactivity.After months of sedation and unsatisfactoryprogress, they might have begun a cycle ofsearching for the correct name for their child’sproblem.

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Current Diagnostic PracticesAs highlighted above, in a country as vast as

India, there are currently no direct channels toorganizations for specific disabilities, such as theNational Institute for the Mentally Handicapped,Secunderabad, the regional Spastics Societies, andAction for Autism, New Delhi. Parents must relyon referrals from their paediatricians, psychiatrists,and psychologists, on word of mouth, and throughnewspaper articles or television broadcasts. By thetime families of autistic children become aware thatthere is a national organization specifically to dealwith their needs, valuable time has often been lost.The reason why a correct diagnosis is so crucial inthe case of autism is because research hasdemonstrated the effectiveness of earlyintervention, specifically intervention that occursbetween the age of birth and four years.

If health care professionals are aware of thediagnostic criteria of autism, diagnosis can occuras early as 18 months. The diagnostic tools mostcommonly used in India at present are theDiagnostic and Statistical Manual, Fourth Edition(DSM IV) and the International Classification ofDiseases, 10 Edition (ICD 10), which have alignedtheir criteria for the pervasive developmentaldisorders. The CARS, though not strictly adiagnostic tool, is often used as one.

The most important information one cangather to assist in formulating a diagnosis of autismrelates to the child’s development in the areas mostimpacted by the disorder: communication,socialization, and restrictive and repetitivebehaviors. There are no absolute markers of thedisorder and no single behavior or characteristicthat is absolutely required in order to apply one ofthe PDD diagnoses. However, there are certaincommon behaviors and features that tend to bemore common.

The following are a list of some behaviors that can be used to formulatequestions which may be useful in reviewing the diagnostic criteria.

The child with autism may:

• Prefer to be alone; appear unaware of other people’s existence.

• Not respond to name and may on occasion appear to be deaf.

• Appear to avoid gaze or show unusual eye contact.

• Not reach out in anticipation of being picked up.

• Not seek comforting even when hurt or ill.

• Not smile in response to parents’ face or smile.

• Have difficulty in mixing and playing with other children.

• Not point to share or indicate interest, or not share in othersinterests.

• Not point to ask for something.

• Not try to attract attention to his/her own activity.

• Not look at a toy across room when adult points at it.

• Not look at things an adult looking at.

• Have difficulty taking turns in turn taking games or activities.

• Not imitate adults’ actions.

• Not pretend to play house, talk on phone.

• Have unusual or repetitive play, lack or have limited pretendplay.

• Have extreme unusual fears or have poor awareness of dangeror not show fear.

• Show delay or lack of language development or loss of earlyacquired language.

• Rarely or not use gestures to communicate.

• Lead adult by the arm to have needs met, or use adult hand asan object.

• Reverse pronouns.

• Echo words or phrases.

• Have difficulty in initiating and sustaining conversation.

• Enjoy rotating or spinning object, or lining up objects, twirltwigs, flap paper.

• Be occupied with parts of objects like knobs, switches, wheels.

• Show apparent insensitivity to pain.

• Like sameness in everyday routines; may show resistance tochange in routines or surroundings.

• Display repetitive actions and ask repetitive questions.

• Not cuddle or stiffen when hugged or cuddled.

• Display unusual behaviour or body movement such asspinning, hand flapping, head banging, or rocking.

• Show extreme distress for no apparent reason.

• Appear unaware of distress in others.

• Display good rote memory for nursery rhymes, commercialjingles, irrelevant facts.

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What often comes in the way of an early or an accuratediagnosis are misconceptions and misinformationregarding autism. These include:

• Autism is a western disorder. It is rarely seenin the subcontinent.

• Autism affects only the rich.

• Children with autism do not like being heldor hugged.

• Individuals with autism do not speak.

• Autistic children do not have eye contact.

• All children with autism are lost in their ownworld.

• Autism is a result of poor parenting and aproper home environment can cure thechild.

Traditionally, a diagnosis of autism is to bemade by a team comprising a psychiatrist,psychologist, special educator, and so on. In manyof the larger facilities this is true. But by and large,diagnosis in India is made by a single individual.This can be a paediatrician, clinical ordevelopmental psychologist, special educator orspeech therapist with extensive experience workingwith autistic children, psychiatrist, or a professionalinvolved in providing medical or rehabilitative careor training. Since the purpose of diagnosis is toensure the child receives the treatment that willaddress its needs, it is considered appropriate thatthe child receives diagnosis from any source thatensures that appropriate intervention is providedwithout loss of time. Currently, diagnosis takesplace mostly in the cities and in pockets in parts ofthe country where there is a knowledgableprofessional available. Small towns and rural areasare mostly outside the ambit of diangosis.

Misconceptions and DiagnosticDifficulties

In 1995-96, research was conducted by a U.S.Fulbright Scholar on ninety-five children in fourmajor metropolitan areas who had a prior diagnosisof autism from a medical professional (Daley,2004). This study found that participants had asmany as six incorrect diagnoses in addition to thatof autism. The length of time between their firstvisit to a doctor and their first diagnosis of autismaveraged 2½ years and parents saw an average offour doctors before receiving the diagnosis ofautism; some saw as may as ten to twelve. All thisclearly indicates that historically, Indianpaediatricians, psychiatrists, and psychologists didnot quickly and correctly identify the condition,and caused parents to waste valuable time andresources. Worthy of note, the study included onlythose families who had received a diagnosis, anddid not include the thousands who had not, whichsuggests that these numbers could be even higher.

In this study (Daley, 2004) parents were luckyif they happened to visit centres like the NationalInstitute of Mental Health and Neuro–Sciences inBangalore and the handful of individual doctorsin a few cities who were equipped to make a correctdiagnosis. In Calcutta, for instance, all the childrenwho received an accurate diagnosis of autism inthe early 1980s had been to the same childpsychiatrist. As the study by Daley (2004)reaffirmed, the average age for diagnosis was as lateas five years.

Misconceptions about autism and lack ofawareness of diagnostic criteria can lead tomisdiagnosis in two directions: overdiagnosis andunderdiagnosis. Neither outcome is beneficial toa parent who is trying to make long-term decisionsfor the education and treatment of his or her child.In recognition of the major systemic changesneeded to improve diagnostic practice of autismin India, Action For Autism carried out intensiveawareness campaigns through the media, throughsocial events, as well as through other means.

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In particular, from 1998 to 2001 Action ForAutism partnered with Rajiv Gandhi Foundationto conduct an awareness project amongpaediatricians across the country. In addition todetermining a baseline level of awareness amongthe country’s paediatricians, an important aspectof the project was the dissemination of informationto participants. Each paediatrician receivedinformation on autism, information on diagnosticprocedures and tools such as the DSM-IV and theChecklist of Autism for Toddlers (CHAT), andinformation that they could share with newlydiagnosed parents.

A significant outcome of the study was thesharp increase in diagnosis that followed. Anadditional outcome has been the fall in the meanage for diagnosis. For example, hospitals, clinics,and other centres where diagnostic evaluations arecarried out are seeing greater number of childrenwithin the age of two and three years. A majorcontributing factor for this has been widespreaddissemination of the CHAT. A checklist that canserve as an excellent and quick screening tool forbusy doctors, the CHAT, by testing gaze

monitoring, protodeclarative pointing andpretending in 18-month-old, has in some wayscreated greater understanding of the social deficitsin autism. Therefore, by the beginning of the newmillennium, things have begun to change.

However, despite increased awareness, it isa safe assumption that many autistic children stilldo not receive a diagnosis. Children at either endof the spectrum—those who have significantmental retardation in addition to autism, and mostsignificantly, those who are high functioning orhave Asperger’s Syndrome are the least likely tobe diagnosed. In addition, the increased rate ofdiagnosis is largely restricted to specific segmentsin the cities and towns. Diagnosis has still to reachthe weaker socio-economic sections in the citiesand towns, as well as those living in rural areas.Despite constant media attention and specificawareness campaigns, a very large number ofchildren with autism in India are likely to goundiagnosed, and therefore continue to lack thespecialised services they require. Chapter 4 willdiscuss issues related to treatment in India.

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Despite recent advances in our knowledge ofcausal factors, the exact etiology of autism

remains unknown. It has been noted, ‘where thereis no cure, there are a hundred treatments’ (Cohen& Volkmar, 1997, p. 950). Nowhere is this truerthan in India. In this country, the range oftreatments for autism include many or most of theoptions available in the West, uniquely Indianizedversions of these, and “cures” that are distinctlyIndian in their flavor.

Despite claims otherwise, there is no knowncure for autism. However, it is increasingly evidentthat educational interventions are helpful for manyif not all individuals with autism. Children withautism can show significant development even inthe core areas of impairment if the interventionprovided is appropriate to the child. This chapterwill focus on educational interventions for autism,but will also cover other types of treatment usedin India.

Historical Overview of Treatment in IndiaA common belief in India even today is that

individuals with autism have ‘a kind of mentalretardation’. Historically, what this implied was thateducation for children with autism need not differfrom that of children with mental retardation. So,while the vast majority of children with autismwere not appropriately identified as such, the fewwho did indeed receive an accurate diagnosis werenevertheless deprived of an appropriate education.Children with autism were also often perceived to

Chapter 4

Treatment

be children who could not really learn, were“untrainable”, and were best left to themselves.

There were, of course scattered schoolsacross the country that were educating childrenwith autism before the 1990s. Amongst them wereSpastics Society of Karnataka in Bangalore,Nambikkai Nilayam in Bagayyam near Vellore,Saraswati Puri in Delhi, REACH in Kolkata, theBM Institute in Ahmedabad, and the Ali Yavar JungInstitute in Mumbai, to name just a few. Many ofthese schools were aware that children with autismhad specialized needs but staff sometimes did nothave the skills or the training to teach their studentsadequately. In early 1994, a school specifically forchildren with autism was started in Delhi, andschools subsequently opened in Bangalore andother cities.

Treatment through education, and certainlyautism-specific educational practices, are not theonly interventions that have been used in India.Some of the earliest articles on autism in Indiarecommended play therapy (Batliwalla, 1959;Bassa, 1962; Chacko, 1964) while othersmentioned the used of electroconvulsive therapy(Dutta Ray & Mathur, 1965; Gamat, 1968), andparental counseling and family therapy (Chacko,1964; Hoch, 1967; Gamat, 1968). None of theseearly recommendations were ever supported byresearch. Of all of the possible interventions,pharmacological treatment of autism has been oneof the most widely practiced in India. While thereis not currently and has never been a drug to treat

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autism, drugs have been widely recommended andprescribed for autism dating back to the 1960s(Dutta Ray & Mathur, 1965; Gamat, 1968).

Current Status of TreatmentCurrently, the number of schools providing

education to children with autism is severelylimited relative to the need but the range of servicesis extremely varied and diverse. These range fromautism specific services to mainstream schools.Starting with the first school in 1994, there are nowaround 15 autism-specific schools in India. Thesehave a student enrollment ranging from 15 to 70.Taken together, this is less than a drop in the oceanfor a country of the size of India. The majority ofchildren with autism who attend school do so atthe nearest special needs facility accessible. Thiscould be a school for children with intellectualdelay, hearing impairment, cerebral palsy, or ofmixed disability. A very small number of childrenwith autism are in a special needs classroom in amainstream school. Overall, the quality of theeducation imparted is uneven. There is nomonitoring of standards. Most schools – even someautism specific ones – do not have staff trained ineither behavioural principles or autism.

There is an unknown, and one wouldimagine a significant number of children withautism who are in regular classrooms. A very largenumber of these are children who have notreceived a diagnosis and are likely to be childrenon the very able end of the spectrum who manageto get by with only a few difficulties. These childrendo not appear to need urgent attention. However,many children who attend regular classrooms areforced to drop out as they become older and theeducational system turns more rigid and inflexible.If the increased academic pressure does not forcethem out, many leave school because they areunable to deal with the bullying and social

ostracism that often occurs. Thus, an importantissue for parents of children in this situationbecomes whether or not to reveal to the teacherand school that their child has autism.

Despite various measures undertaken topromote universal education, children withdisabilities are not guaranteed an education inIndia. Therefore, both public and private schools,particularly private schools, accept, reject, and expelchildren with autism as they please, and this createsa power differential between schools that have longwaiting lists and desperate parents.

Since no surveys have been carried out, it is difficultto say how many children with autism overall are inor out of school. It is safe to assume that a large numberof children with a diagnosis of autism do not receiveany educational service at all. Either there are noservices available in their area, or there are no spacesavailable to accommodate them. Thus, the numberof children who are out of school is no doubt significant.

Regardless of the type of school a child withautism attends, there is abundant evidence to showthat children with autism can and do makeimprovement with appropriate intervention. Whatdoes ‘appropriate intervention’ look like? Theanswer to this question is complex: appropriateinterventions, at the very minimum, must includea focus on the core deficits of autism, specifically:social skill development, communication, andbehavior. Focusing on these three areas alone,however, is not sufficient. The educationalprogram for a child with autism must be based onthe unique needs of the student; it must beindividualized. For the same reason that childrenwith autism need a specialized training program,i.e., that they often do not respond to the sameteaching methods used for other children, childrenwith autism also differ dramatically from one

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another. An appropriate educational program willincorporate both the general needs of children withautism with particular needs of the child inquestion.

In the U.S. and elsewhere, movements haveevolved to encompass these teaching principles.These range from established methods such as thatdeveloped by Division TEACHC (Treatment andEducation of Autistic and CommunicationHandicapped Children), or Lovaas-inspiredmethods, both of which are behaviour based:targeting antecedents and/or consequences ofbehaviour in order to help individuals with autismlearn and progress. Interventions specially devisedto teach communication as opposed to primarilytargeting the development of speech, as well asothers that develop social and relationship skillshave evolved using various behavioral strategies.Over the years, assistive and augmentative modesof communication have evolved greatly as havetechniques to bring about sensory integration.Started intensively and early on such educationalstrategies, many youngsters have gone on to holdjobs in the community, complete higher education,and generally lead fulfilling lives.

In India, TEACHC strategies were firstintroduced at Open Door in Delhi in 1995,followed shortly after by ASHA in Bangalore. Overthe next few years, the use of TEACHC strategiesspread across India through training workshops.This was subsequently followed by a number ofprofessionals receiving training at DivisionTEACHC. Simultaneously, the practice of discretetrial training, as propagated by Ivar Lovaas, alsobegan to be used. Likewise, one of the earliest sitesto focus specifically on communication issues wasCommunication DEALL in Bangalore, Dikshan inKolkata and shortly after SAI in Mumbaiintroduced Verbal Behaviour Analysis, with itsfocus on teaching language not as a semantic

exercise, but as a behaviour with a function andpurpose. In general, the importance of providingeducation that took into consideration the specialneeds of children with autism slowly began to‘catch on’. The process has been accelerated byfrequent seminars and workshops with leadinginternational speakers that were organized byorganisations across the country including ForumFor Autism in Mumbai, Action for Autism inDelhi, Autism Society West Bengal in Kolkata, IRISin Chennai, and KPAMRC in Bangalore. Exposureto international thought and practice is helping toclear away many of the cobwebs that clung totheories of educating children with autism. Inaddition, these conferences and training programshave brought about an openness of outlook amongprofessionals that are now willing to embrace morecurrent strategies in education.

At the same time that educationalprofessionals are gaining an understanding ofautism-specific interventions, it is still importantto recognize the relationship between diagnosis andtreatment. An accurate diagnosis is meant to helpboth parents and schools develop effective ways ofteaching the child. Though each autistic child isunique — just as all children are with a diagnosisof ‘mental retardation’ and all children without anydisability at all—knowing that a child is autistic canhelp a teacher understand and accurately interpretthe responses of the student. The hope, of course,is that knowledge of a diagnosis of autism willempower a teacher, not prejudice her. However, acommon error among educators is to makeassumptions about children with autism based ongeneralizations or stereotypes, without actuallyidentifying a child’s strengths and particular needs.Unfortunately, teachers with only a minimalunderstanding of autism often hastily conclude, “allautistic children enjoy music, so I’ll teach this one

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using music”, or “all autistic children like to bealone, so I’ll force this one to be with others”.

Ironically, increased awareness of autismamong special educators has led, in some cases, toa new type of discrimination. Some schools willturn away children diagnosed as autistic becausethey feel they cannot provide adequate one-to-oneattention, which they have been told a child withautism must have. This, however, is a disservice tochild, parent, and school. A higher functioning ormore independent autistic child may not need one-to-one attention at all, and is then denied aneducation he fully deserves. The parents of thechild may become frustrated after being told theirchild can’t attend school, and may begin to resentboth the diagnosis of autism and the system whichhas trapped them. The school loses, as well, becausethey may gain a reputation among parents as beinginadequately prepared. As an example, one motherwas told her daughter would no longer be able toremain at the school, because she was not‘controllable’. This mother responded, “Well, whycan’t you control her? Why is my daughter beingpunished for your incompetence? It isn’t mydaughter who has a problem, it’s your untrainedteachers.” Not surprisingly, neither mother nordaughter was welcomed back. In an ideal situation,schools and parents would be able to work togetherto resolve such situations.

In sum, regardless of the type of schoolsetting and the number of hours a child attends,the majority of a child’s waking time is still spentout of school, with his or her family. Because ofthe clear need to provide a more intense form ofintervention to all children with autism, a feworganisations like KPAMRC in Bangalore,Ummeed Child Development Centre in Mumbai,Action for Autism in Delhi and Autism SocietyWest Bengal, Kolkata focus on training parents withconsequent demystification of professional

expertise. The goal of these programs is to educateand empower parents to be able to provide trainingto their children in a range of areas, includingfunctional academics, self-help, socialization andlanguage, and to make use of the valuable hoursspent out of school. Parent training in the contextof many of these organizations goes beyond whatis often seen in more developed countries. Formany children with autism in India, training froma parent is the only intervention they will receive,whether it is because there are no facilities availablefor the child, or the parent is unable to afford thefacility, or because the facility will not accept thechild.

Early InterventionAs noted above, children with autism can

make significant gains through educationalintervention, and particularly when theintervention is early. Early intervention has beenshown to result in the child needing fewer specialeducation and other allied services later in life andsome children being indistinguishable from theirtypically developing peers in their later years.

The concept of early intervention in Indiais still in its infancy. Such intervention relies ona chain of events which, at the current time, islacking. Namely, a parent must identify someatypical behavior in their child and bring it tothe attention of a pediatrician or their healthworker; that pediatrician must identify thebehaviors as possible symptoms of autism (ratherthan merely delayed development, a typicaldevelopment, or another disorder); thatpediatrician must also know of a referral toprovide to the parent; the parent must followup on the referral; the agency or individual towhom the child has been referred must concurwith the diagnosis of autism and be willing toprovide services to the child and family.

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Even in the largest cities in India, this chainis likely to miss crucial links at one or more of thesestages, thus eliminating the possibility forintervention to occur in a timely manner.

Other TreatmentsThe growing popularity of the Internet has

contributed to openness to new ideas about autismin India, and its influence is not inconsequential.However, information from the Internet has had aflipside as well. In recent years, the focus hasshifted somewhat from ‘education’ to a spate ofalternative therapies that often make parentshopeful of a cure. Children with autism are often‘normal’ in appearance, making parents believe thatif they could just find the ‘key’ to unlock the enigmaof their child all would be well. This makes parentsgreatly susceptible to proponents of cures that arelargely unproven. The propagators of unproventreatments range from animal trainers toperforming artists to sometimes even medicalprofessionals. Many of the ‘therapies’ being pusheddo in fact have positive effects, not just for personswith autism but for all people. These includeactivities such as yoga, or keeping Labradors as pets,or horse riding. But they are not therapies that havebeen proven to bring about any changes in the coreareas of impairment in autism.

As noted above, treatment for autism in Indiais far broader than just educational interventions.

Pharmacological treatment continues to havea foothold in India. A study by Daley (2002)reported that among a group of 95 children, over50 different medications had been prescribed fortheir ‘autism’. Seventy five percent of the samplehad taken medication in the past, and 42% weretaking medication at the time of the interview.Families in this study also reported an extremelywide range of treatments/‘experts’ for their

children. These included: acupuncture,acupressure, Auditory Integrated Therapy,ayurvedic medicine, behavior therapy, magnetotherapy, Dimethylglycine facilitatedcommunication, etc., ‘Expertise’ of astrologers,faith healers, Fakirs, family counseling, family guru,and such others were also sought (Daley, 1997).

Some of the treatments listed above may infact be helpful to children. However, there is atendency by both parents and professionals to besubjective in their evaluation of whether or not atreatment is effective. For example, there aretherapies which involve the ingestion and orinjection of powders and liquids, drawing of bloodand bodily fluids, immersing the children invarious baths, and changing their diets. Oftentimes,positive changes in children are attributed to thetreatment, while negative impacts – which mostlyremain unreported – if at all reported, are attributedto wrong application of the therapy. Many of thesenew therapies – and a new one comes into vogueevery few days – are often promoted with ‘studies’conducted by the manufacturers or distributors ofthe therapy. In addition, some propagatedtreatments are extremely expensive. Interestingly,the very expense acts as an attraction for using thesetreatments. While parents often balk at the cost ofspecial education, many are willing and happy toscrape together huge amounts to pay for unprovenand often dubious but expensive treatments.

It is not surprising that parents, and someeducators, would be taken with the possibility of aquick cure. In contrast, behaviour based educationrequires tedious hours of one-on-one work by welltrained professionals. It is often an unattractiveoption for desperate parents, particularly since thesituation is exacerbated by the very limited numberof centres providing such education. In conclusion,treatment for autism in India is varied. While

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educational and behavioral approaches are the onlyconsistently demonstrated method for change inchildren with autism, most children in India donot have access to any services, let alone servicesthat are specialized for their needs. As moreteachers become trained, more schools are opened,

and more children are admitted into mainstreamschools, the situation will hopefully improve.Much of this change is dependent on changingsocietal attitudes, which is part of the topic ofChapter 5.

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In the preceding Chapters, we have touched onthe experience of parents as they navigate a

diagnosis and seek appropriate treatment for theirchildren. Parents are, of course, central to everyaspect of their children’s development and aretherefore rightly integrated into a discussion ofspecific domains related to children with autism.Parents are also members of the broader society,and thus, parental involvement, attitudes, andfamily issues are also both a reflection of the largersociety and must be viewed within that context. Inthis Chapter, we will review some of the moreprominent impacts of the broader society onfamilies and children with autism, and will alsodiscuss some of the unique aspects of parentalinvolvement and family issues related to autism inIndia.

General Societal Attitudes

When families have difficulties in dealingwith the child’s disability, the prejudices they bringto the diagnosis are largely a reflection of the societyof which they are a part. In general, societalattitudes toward autism in India have been similarto attitudes toward other disabilities. Disability isseen as a result of sins committed in previous lives,and the notion of bad karma is still widely evident.Indian society tends to look down on a family witha disabled member, as the family is seen to have‘deserved what it got’.

Given the lack of awareness and discussionof disability in the larger society, it follows that

Chapter 5

Societal Attitudes Towards Disability,Parental Involvement and Family Issues

parents are often slow to recognize some of theimportant symptoms of autism. For example, forfirst-time parents, early differences in socialinteraction may not be recognized as atypical, orthey may attribute their child’s behavior topersonality differences, such as believing that theirchild is just more independent or ‘mature’ forpreferring the company of adults to children(Daley, 2002), or ‘a thinker’ when their child is non-verbal. Negative attitudes about disability in thebroader society only compound the problem ofidentification of symptoms in a new parent. Whenone’s extended family–neighbors, and the broadersociety–all place such a premium on children as areflection of their parents and conversely, that thecause of a problem in a child is so quickly attributedto them, parents have ample reason to keep theirconcerns to themselves.

Yet, whether out of their own choice orbecause they are prodded on by others, parents willultimately seek help. As described in Chapter 3,parents often spend a long, frustrating period tryingto get a correct diagnosis for their child. Whenparents finally receive a diagnosis of autism theymay find it difficult to accept that their ‘normal’looking child may have a lifelong disorder, and arefurther bewildered by the complexity of the waysautism affects individuals. Sometimes professionalsseek the easy way out by telling parents their childhas ‘autistic-like features’ or a ‘just a little bit ofautism’. While such information may be motivatedby a desire by the professional to cushion the news,

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or to maintain a relationship with the family, doingthis is actually a disservice since it merely delaysthe process of the family accepting the diagnosisand getting help.

Parental ReactionsGiven that Indian society views disability as

a ‘tragedy worse than death’, it is not surprisingthat families may feel the desire to hide thediagnosis, or even the individual with disability,from the world in order to avoid societal censureand ridicule. Coming to terms with a diagnosis ofdisability in a child is never easy. Families almostalways go through a process of grieving withemotions that may range from confusion, guilt,shock, frustration, anger, denial, anxiety, shame,resentment, inadequacy, depression, to thequestion “Why me?” When the diagnosis is one ofautism the situation is even more complex.Compared to other disabilities, a child with autismmight be physically normal and healthy at birth,and for the initial years parents may imagine theyhave a regular child. Some parents experienceconfusion and helplessness if their child isnon-responsive or aloof, or if as often happens theirchild experiences a regression following a periodof apparently typical development.

However, diagnosis is only the first step.Having received a diagnosis of autism, parentsgenerally do not know what to do next in order tohelp their child. In some cases, they areoverwhelmed by the prospect of a diagnosis withno referrals or recommendations whatsoever. Inother cases, they become frustrated when they seekout educational or social support and schools orprofessionals who can guide them with their childand find very little that is specific to autism, or arereferred to agencies that have no space availablefor their children. Attempts to integrate theirchildren in the broader society on their own can

be taxing for parents. Since many children withautism look ‘normal’, people unfamiliar with thedisorder often mistake their tantrums and socialinappropriateness as evidence of spoiling, orparents are viewed as uncaring and unable to handletheir child.

In recent years, many parents haveexperienced a new and potentially equallyfrustrating situation. Due to the explosion ofknowledge through the internet, parents come tolearn the crucial importance of immediateintervention in long term prognosis of childrenwith autism. Knowing this and yet not having thetools is extremely frustrating, and can increase aparent’s sense of helplessness. Some parents mayfeel as though, ‘what is the point’ of trying anything,if their child cannot access the plethora ofintervention options available in other parts of theworld. Others may contemplate how to move theirentire families across the country or across theworld. However, many enterprising parents are alsoable to access information, accept the limitationsof the Indian situation, and do what they can toadapt different approaches to their own situation.Of course, it is important to note that the abovedescription is true primarily of parents in urbanareas, as those in rural areas mostly do not havethis information, nor do they typically receive acorrect or any diagnosis. ‘Bachhe pagal hai’, theblanket term that is slowly fading out in cities andtowns, still prevails in the rural areas.

That families are able to move beyond theprejudices of society is a tribute to human resilienceand spirit. Yet parents of children with a disabilityinvariably face a frustrating contradiction evenwhen they try to maintain a positive view. On theone hand, society views disability through anextremely negative prism of ‘better dead thandisabled’. On the other hand, the most commoncriticism parents face from society, including from

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professionals, is that they are not accepting theirchild’s disability. Along this same vein, mothersoften report that when they do, in fact reach a pointof acceptance of their children and they take thetrouble to dress up and resume ‘normal’ activities,they are then termed ‘uncaring’ mothers. Theperception of the mother of a child with disabilityas someone who should give up on life and donthe proverbial sackcloth and ashes, remains verystrong in India.

There is no question that parents of childrenwith autism in India experience considerable stress.A child with autism has socially challengingbehaviours, which frequently lead to the loss offriendships, social isolation, and loss of a career orcareer changes. The fallout of the pressures of lifefollowing a diagnosis of autism includedisintegrating marriages due to the challenges ofdealing with the disruptive behaviours of the child,complaints from neighbours, and loss of sleep.Assumptions and aspirations are challenged. Lifefor the family changes forever. The littleintervention that is currently available onlyaddresses the child; few families in India haveaccess to mental health professionals or an outletfor their own feelings. Services to support parentswith coping strategies to deal with stress ofparenting a child with autism and help themdevelop a positive attitude is non-existent, with theexception of a few parent-initiated support groups.

Part of the lack of services and support forparents is because of the strong belief in the‘professional knows best’ school of thought inIndia, where parents are not supposed to knowanything about handling the child. Parents are notexpected to have an opinion in the kind ofinterventions that the child is put on. They areoften actively disallowed from attending trainingmeant for ‘professionals’ regardless of the fact thatthe parent might be well educated, intelligent, and

well informed about autism. On the other hand,when professionals are not able to help the child,which is quite understandable in a complexdisorder like autism, parents are often given thesole responsibility of caring for and educating thechild. With only a few exceptions, the limitedservices and support that exist for children withautism in India are geared toward the child ratherthan the family.

As the descriptions above make clear, parentsof children with autism in India face a myriad ofchallenges, both as a result of the inherent hurdlesof having a child with a disability and the impactof a society often impedes rather than promotesthe integration and acceptance of children withdisabilities into its midst. However not all is bleak.Recent studies have consistently reported thatfamilies with a child with disabilities can and infact do have positive perceptions which lead tobetter quality of life for the family, and scope formaximizing the child’s potential. Thoughprecipitated by a specific event, formation ofpositive perceptions is usually a process, which canoccur simultaneously or a longtime after the event(Gupta and Singhal, 2004).

Thus, while the impact of an autistic memberin the family often is seen to be perceived by societyas a negative event, the outcome may not alwaysbe so. In fact, the diagnosis of autism has madesome families stronger, more tolerant and acceptingof each other, and helped them find an innerstrength that has turned them into advocateshelping not just their own child but the largerpopulation of children with autism. Marriages arestrengthened in the shared efforts to cope with thechanged situation. Siblings grow to be empathic,open-hearted adults who help educate others intheir community. Lost friendships are replaced bynew friendships from among other families ofchildren with autism. In India, as in many

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countries, parents have led the movement forpeople with autism, and through their strength anddetermination, the prospects for children withautism are continually improving.

Apart from the question of whether or not to haveadditional children, either for care of the autistic childor for other reasons, siblings of children with autismin India experience a different type of childhood.One parent described this in the following way:

“I always feel as parents, we may often directly orindirectly influence the child to behave like a parentto their autistic sibling. We feel proud that, say, ourfive-year-old is like a ‘mother’ to her twelve yearold autistic brother. I feel that in the beginning thismay go well as the normal child may show moremental maturity than her peers, and also at the sametime get into the good books of parents and wellwishers. We can definitely include our normal childin our day to day activities and maybe we can plana few activities which the normal child can do withher affected sibling, like play activities, listening totheir favourite music, turn taking games, andarranging the table before a meal, etc. However weneed to keep one thing in mind, that in the processof looking after the disabled sibling by the normalchild, the latter should not be deprived of his or herown childhood.”

Family IssuesSeveral family issues related to children with

disabilities, and autism in particular are unique toIndia. Even while trying to help their child developand grow in the present, many families areconsumed with questions of what will happen totheir child after them? Some families wrestle withthe question of whether it is ‘fair’ to burden a non-autistic sibling with that role, while other familiesmay beget an additional child with that purposeexplicitly in their mind. However, this decision isnot one to be taken lightly. While autism is clearlygenetically determined, it is unlikely that the resultis of only one gene. As such, parents of a child withautism have a 5 to 10 percent chance of havinganother child with autism. There are recentdiscussions among parents of creating long-termliving options for their children, but even theexistence of a few facilities will only partly assuagefears in parents about their children’s future. Evenparents with the means to provide for their childrenafter their own death note that all the money inthe world cannot guarantee that their child will bewell-cared for, loved, and nurtured, and that moneymeant for the child will not be misused.

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Chapter 6

Vocation, Employment and Adult Life

Provisions to meet the educational needs ofindividuals with autism are geared to enabling

them to lead as independent a life as possible inadulthood. This implies that education wouldprovide the individuals with work skills that wouldmake them eligible for seeking employment, obtainemployment, retain their jobs, be able to liveindependently, and have adequate leisure skills. Yetthe few educational opportunities that currentlyexist are more focused on the development ofcognitive skills and on ‘academics’ and pay littleattention to the needs of individuals for when theybecome adults with autism. This near-absence ofappropriate educational opportunities severelylimits the possibility for employment—andtherefore, the opportunities for independentliving— for the vast majority of individuals withautism. In order to maximize the options for adultswith autism to be independent as adults, currentservices and planning must also take intoconsideration the need for training in vocationalskills, job opportunities, living options, andrecreational opportunities.

Vocational TrainingTraining in work skills among young adults

and adults with autism needs to focus on theirstrengths. In general, individuals with autismperform best at jobs which are structured andinvolve a degree of repetition. They thrive in anenvironment that is structured and well organized.Persons with autism often excel in tasks involvingnumbers, book keeping, data input, accounting,

and tasks involving rote memory. In a job setting,they may have a good eye for detail and meticulousapplication of routine tasks. Given the social deficitsof autism, they are best at jobs that do not involvea lot of dealing with the public, do not rely tooheavily on social skills, and jobs which are routineand predictable. Most persons with autism will dohappily and well on a repetitive type of job, such asputting a shuttle through a simple loom repetitivelyto weave long swatches of fabric, or silk screenprinting. These are tasks that the non-autistic maybalk at. They are also good at jobs where they mighthave to speak a lot, but can speak withoutinterruption about their own interests. Training invocational skills and employment for individualswith autism should thus focus on these strengths.

Some of the difficulties they face are withinterpreting verbal and non-verbalcommunication, such as idiomatic language, facialexpressions and body language, difficulties in jobsthat require dynamic social interactions. Initiatingand maintaining conversations on general topicsmay not be of particular interest to them. Similarly,jobs that require them to look beyond their narrowinterests towards abstract ways may be difficult.Vocational training must teach skills to get a job,but more importantly, also directly teach the skillsthat are needed to keep those jobs.

Currently Action For Autism has a workskills training unit and that too is at a nascent stage.A few individuals have gone into the work arena,but finding open employment for most remains a

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difficult task. AFA’s experience has shown thatthose with Asperger’s Syndrome who completemainstream education but have interpersonaldifficulties, training in work place etiquette andrules is imperative. By and large vocational trainingfor persons with autism is really non-existent.

Making the Work Environment Barrier Free

• Use of visuals in most areas.

• Written rather than spoken instructions.

• Clear guidelines of expectations.

• Clearly laid out rules of the office.

• A routine that remains fairly unchanging.

• Items of tools that are used remain fairly unchanging.

• A visual schedule for the day.

• Job broken down into parts and put down on paper.

• A list giving the order in which a task is to beperformed.

• Minimal situations of having to unexpectedly leavework on hand and concentrate on something else.

• Distraction-free seating versus an open area with highnoise levels.

• Work area / location that does not change frequently.

• Fairly consistent interpersonal contact with not toomany unexpected changes.

• A team that does not change frequently.

• Feedback that includes positive experiences, as wellas advice on changes.

• A mentor to guide on social rules of the workplace.

• Training in disability awareness for colleagues on thedifficulties in communication and social interactionwhich often results in others misunderstandingthem.

Employment OpportunitiesIn addition to training in vocational skills,

there are autistic individuals who are in openemployment or in sheltered workshops in India,and these individuals cope with their special needsand adapt to the work environment, even in theabsence of required training and supports. Peoplewho have autism are currently employed as artists,

librarians, stock keepers, data entry operators, otheroffice workers, computer operators, mail anddispatch staff, assembly line workers, accounts, andin sheltered work settings. In the successful cases,the work environment has provided the necessarysupport and have adapted to the needs of theindividuals. Much of this has been serendipitousand without an awareness of the individual’sdiagnosis of autism. Yet as both educational andworkplace environments become increasinglycompetitive, individuals with autism will needcertain provisions in order to access the workplace.

Barriers to successful employment may arisebecause Autism Spectrum Disorders (ASD) is ahidden disability and coworkers not aware of thenature of the person’s disability may easilymisunderstand them. In addition, most jobsrequire an interview process which relies oncommunication and social interaction skills, areasof particular difficulty for a person with ASD. Withappropriate training and matching of skills to jobspeople with autism can learn meaningful job skillsthat enable them to successfully work incompetitive employment, supported employment,or in sheltered workshop programs.

The communication difficulties faced by people withautism may mean that they cannot explain when aproblem arises, despite having good language skillsand a wide vocabulary. So it may be crucial for themanager or one particular colleague to keep an eyeon the employee with autism to help the personprioritise their day. This may not be in a supervisoryway, but may be seen as the role of a support worker.As an example, an office can use a support workerto point out details that may cause offence; and theemployee with autism can be instructed tocommunicate with their support worker aboutinterpersonal difficulties, rather than directly tellingthe person concerned.

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Social Aspects of the Job

It is not unreasonable to imagine that otheremployees will be confused by the nature of someonewith an autistic spectrum disorder. The nature ofthe social and communication difficulty is such thatmany of the things we take for granted are missedby the person with autism. This includes officeetiquette such as the appropriate distance to standfrom someone and appropriate topics of conversationat work. Coworkers may wonder, ‘How cansomeone know so much about a subject and yet maketotally inappropriate comments? Surely they mustknow that this is offensive?’ But as Temple Grandinexplains, the person with an autistic spectrumdisorder is unlikely to know this at all:

“I soon developed a reputation in Arizona for beingan expert in my field, but I got into trouble socially.I did not understand that people have egos, andthat protecting their ego was often more importantthan their loyalty to the company. The otherengineers resented me. Technically I was right, butsocially I was wrong.” (Grandin, 1996).

“Honesty is another positive feature (of people withautistic spectrum disorders). There is little dangerof dishonesty over expenses, or other infringementsof office rules, because of a strict adherence toregulations, and employers often come to place agreat deal of trust in employees with autism,whatever their level of functioning.” (Howlin,1997, p. 192)

Living OptionsIndependent living options for adults with

autism in India are currently non-existent. Thereare mixed disability facilities, but most do not wantto handle any individuals perceived to have

challenging behaviours. A few residences currentlydo have residents who have autism; some of theseare supported by the National Trust.

There is a range of living setups that mightbe appropriate. Keeping diverse needs and meansin mind one may think of group homes andsupervised living arrangements, to institutions;regardless of how regressive the latter might seemto be. People with autism can learn skills to live asindependently as possible through specificallydesigned programs in group homes and supervisedapartments. The aim of all services has to be tooffer access to as full, enjoyable and meaningful alife as possible to each individual. Programs mustbe designed to offer additional help incommunication and social skills and to compensatefor difficulties in imagination – all barriers toachievement of a full and enjoyable life.

Recreation and Social Life: Opportunitiesand Issues

Individuals who have autism, generally haveto be taught to develop leisure skills, somethingthat most of us do naturally. However, once taught,they may develop diverse leisure interests and oftenenjoy the same recreational activities as their non-handicapped peers. A large number enjoy musicand many are great singers, working on puzzles,computer games and physical activities that can bedone on their own yet alongside others such asswimming, hiking, camping, cycling, and rollerskating. Because of their socially awkward waysthey are often made to feel unwelcome at sportsfacilities, except where the parents are able tosurmount such hurdles. However, there are otherpublic areas that people with autism visit.Increasingly one finds people with autism enjoyingmeals in restaurants and tolerating long hours intheatres and to enjoy the experience.

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Rehabilitation training specific to any disability has to be based on the premise that (a) the

individual with disability is capable of learning,(b) that there are ways of teaching that are specificto that special need, and (c) that there is a significantpopulation requiring the benefits of any suchtraining. In professionals’ perceptions in India,Autism did not come under any of these for a verylong time. As recounted elsewhere in this report,the needs of this population were grosslymisunderstood and often underestimated.

Historical OverviewIndia has a long history of rehabilitation

training, with the earliest being for the locomotorimpaired and for the visually impaired. While someof these trainings are under the Medical Councilof India, a very large number are regulated by theRehabilitation Council of India. Particularly in theareas of mental disability, the role that theRehabilitation Council of India plays is significant.

The development of human resources forautism specifically relies on the presence ofchildren with autism in significant numbers, theacknowledgement of their specific needs, and theacceptance that specialized teaching can lead todevelopment in the core areas of impairment. Fora very long time there was a strong belief thatautism was largely indistinguishable from mentalretardation, and hence there was no need to ‘wasteresources’ in providing training for those who teachindividuals with autism. In addition it was felt tobe a rare condition and not of particular relevance

Chapter 7

Human Resource Development

to the subcontinent. Given this, it is not surprisingthat human resource development in the area ofautism has only recently begun.

It is crucial for anyone teaching a child withAutism Spectrum Disorders (ASD) to firstunderstand the distinct learning and behaviouralcharacteristics of children with ASD, and theiratypical cognitive and social development. Manyteachers trained to teach children with MentalRetardation (MR) sometimes view the impact ofASD as merely on behaviours. But ASD is morethan behaviour. Individuals with ASD havepervasive impairments in communication andsocial skills, difficulties in joint attention, inprocessing auditory information in the classroom,in retrieval. Most have difficulties in generalizingskills taught, in sequencing, and in transitioning.Many have specific learning disabilities. ASDaffects the individual’s ability to integrate sensoryinformation and regulate their emotions. Theyhave uneven development so that they mayfunction at a higher than their age in some areasand be far below in other areas. Without clarity ofunderstanding, teachers can often misinterpretfunctional abilities and do more harm than good.

Since children with autism have often beenviewed as having ‘bad behaviours’, if a child in aschool did not exhibit any challenging behavioursthen intervention was believed to have beensuccessful. It appeared irrelevant to educators thatchildren did not achieve even a fraction of theirpotential.

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Development of Diploma in SpecialEducation (Autism Spectrum Disorders)

Two organisations in different parts of thecountry started teacher training programs in theearly nineties: KPAMRC in Bangalore and Actionfor Autism in Delhi. With the coming in force ofthe RCI Act in 1992, a need was felt to have trainingunder the RCI. However, though there was initialresistance to this move because of variousmisconceptions, this was subsequently overcomeand a Diploma in Special Education (AutismSpectrum Disorders) was started in July, 2003. Theprogramme is currently being administered by fourorganisations which have been selected to providethe training on a pilot basis. Based on the outcome,the RCI plans to extend the course to otherorganisations.

At the inception of this course, the facultyavailable did not have all the qualifications and/orthe experience that is mandated for administeringthe course. As a result, a few of the organisationshad to do with individuals with backgrounds inother disabilities. This is to be expected in a newdiscipline. Some organisations have had the benefitof individuals with training and experienceoverseas. The limited remuneration in the field ofspecial education in India did nothing to encouragethis trend. However, as more teachers get trainedin the course and gain experience, it is expectedthat some of them could take on the role of facultyfor subsequent training.

Diploma in Special Education (Autism Spectrum Disorders)

Training Centres Number of trainees in each year

2003-04 2004-05 2005-06 2006-07

Spastics Society of Karnataka, Bangalore 10 7 14 14

School of Hope, Delhi Not received 16 10 Not received

Action For Autism, Delhi 11 9 9 13

Jai Vakeel, Mumbai Not received Not received Discontinued Discontinued

Pradeep, Kolkata Not started Not started 10 15

Since most special needs schools also havesignificant numbers of children with autism, buthad teachers who did not have the know-how toteach the children. From 1995, Action For Autismstarted giving practical Training Workshops thatgave such professionals the tool to help theirstudents. Workshops were also organized forparents to enable them to understand their child’scondition and help them learn. The success of theworkshops saw requests come in for the AFA team

to give workshops in different parts of the country.Workshops were also organized to be given byvisiting international experts. Currently, the valueof workshops both as initial training tools as wellas continuing education program is well establishedand various organisations now undertake suchactivities.

Several specific groups of professionals maybe able to contribute significantly to providing

29

training. Since communication is an area ofsignificant impairment in autism, speech languagepathologists, when they have a clear understandingof autistic behaviour could potentially play animportant role in providing training. As institutesof speech and hearing introduce courses on speechlanguage pathology with a segment on autism, itwill add to the pool of resources available. Anothergroup of professionals which can contribute totraining for individuals with autism areoccupational therapists, who can addressproprioceptive and vestibular issues and sensoryissues as well. Currently a few occupationaltherapists who have developed an interest in autismreceive trainings through workshops by individualslike Dr. Anjali Joshi of KEM in Mumbai, andcompetently address these needs in the therapythey provide.

Child and adolescent psychiatrists canprovide medication to deal with anxiety anddepression thus enabling the child to learn and alsoenabling careers to put in place behaviouralintervention following which the medication canbe withdrawn. However, all professionals need aclear understanding of the spectrum if they areindeed to help the child. As the understanding of

autism in the country is still limited, this is reflectedin the larger circle of rehabilitation professionalswho provide services to individuals on thespectrum. There is also little scope to acquire theskills required to address issues on the spectrum.

Families require therapists who can addressa range of issues without having to knock onmultiple doors. This is where the value of the RCI’sDSE (ASD) training lies. Well administered, thistraining can produce well-rounded teachers whocan address every area of concern of parents and itfocuses on creating a group of professionals whoserve as the central pivot of services. The start ofthe training has been slow but steady. So far around200 teachers have been trained. There is a hugedemand for the trainees who pass out. The demandcomes from a range of services: autism specificschools, mixed disability schools, as well asmainstream schools. The number currentlytrained, of course, is a drop in the ocean. But it is astart. The upside is that professionals who do nothave specialized training in autism too arebenefiting from working alongside colleagues whohave undergone the training. From this experienceit is clear that additional trainings need to beintroduced.

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Advocacy for disability is a relatively recent development. Autism, therefore, has an even

shorter history. The government no doubt playsan important role in disability issues. However, nogovernment action for autism would havehappened if it were not for the pressure from thenon-governmental sector driven by parents.During 1994, while the draft of the Persons withDisabilities bill was being debated, efforts by ActionFor Autism to bring autism into the picture wasmostly met with bemusement. Officials in theministry as well as experts in the field of disabilityfelt that autism was not an ‘Indian’ condition andtherefore not worth consideration. Many had notheard of autism. It was the efforts by NGOs thatforced the government to begin to consider autism.

In time the Persons with Disabilities Act waspassed, but the efforts to bring autism center stagecontinued. These included making representationsto the senior levels of the then Ministry of Welfare,sensitizing staff at every level in the state and centralministries. Since advocacy flows from awareness:regularly placing articles in the print media (visualmedia was yet to gain the prominence of the 21stcentury), holding public events where largenumbers of the lay public were exposed to autism,and sensitizing members of the medicalcommunity.

In 1996, Action For Autism started a morefocused campaign for the acknowledgment ofautism as a condition that was distinct from otherdevelopmental disabilities and with distinct needs

requiring specialised services. It prepared a well-researched, and comprehensive documentreferencing disability and autism in legislation indifferent countries and submitted the documentto the then Ministry of Welfare. Subsequentlygovernment action reviewed the status of autismin the legislation. One outcome of this was thatwhen the bill for the National Trust was beingdrafted, a member representing the autismcommunity was appointed to the draftingcommittee. Once again, when as a result ofsustained advocacy the then Ministry of Welfareappointed a committee to suggest amendments tothe Persons With Disabilities Act a memberrepresentative for autism was appointed along withrepresentatives for mental retardation, visualimpairment, hearing and locomotor impairment.Under the chair of outstanding legal professionalDr. Amita Dhanda, the committee came up with apaper which unfortunately left on the back burnerand forgotten. Subsequently, however, the NationalTrust Act for Autism, Cerebral Palsy, MentalRetardation and Multiple Disabilities came intoeffect from 1999.

The aim of advocacy is to ensure full rightsand participation for individuals, therefore earlyactivism in autism had to focus on more basic issuesas well. Efforts in different directions continuedand an important one was advocating foreducational rights. In order to enable individualswith autism to be empowered to participate fullyin society, they need to have access to education.

Chapter 8

Advocacy

31

Marked by a poor understanding of educationalneeds, autism was sometimes perceived as ‘anotherform’ of mental retardation and at other times as‘another form’ of mental illness – depending onwhose perspective one was looking from. Noparticular educational needs were seen to apply tothose with autism. If a child with autism was pliantand ‘appeared’ to be learning, that was consideredsufficient. It was with the establishment ofspecialised educational services starting with OpenDoor School in Delhi which showed significantprogress in children, and propagation of themethods used, that forced educators to take noticeof the specific learning disabilities that oftenaccompany autism, and the specialised teachingtechniques that they can benefit from. Thus farany inclusion had happened by default rather thandesign. Now, advocating for their educationalneeds not merely opened up possibilities ofplanned inclusion for autistic learners, but also thescope for learning for many who were given up as‘hopeless’ cases.

Inclusion is an ongoing process. Sustainedadvocacy by NGOs has led to some new

mainstream schools including a resource room forspecial needs with provision of mainstreaming andfinally full inclusion. Simultaneously, it has alsoensured greater understanding of the impact ofintervention leading to a range of other educationalservices for those on the spectrum.

With the passing of the RehabilitationCouncil of India Act in 1992 and the stipulationthat rehabilitation professionals all have RCIcertification, it became imperative that aspiringpractitioners to teach individuals with autism hadaccess to training that would confer suchcertification. Several years of sustained activismeventually made possible a training course underthe RCI that would make this possible. The mainobjective of organizations such as AFA in anadvocacy role has been to force policy makers tomove from their dismissive stance towards autismto one of acknowledgement of this complex andcommon disorder. Some gains have been made inthis regard but a very great deal still needs to beachieved.

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Despite great strides worldwide in the studyof autism, and tremendous growth in our

own country, general understanding of thecondition remains at a nascent stage. In India, workin the field has been minimal, whether in research,service delivery, or human resource development.To date, much of the progress made has been drivenby NGO initiatives, which are largely parent-driven and with limited backing of majorgovernmental bodies.

This report on the status of autism in Indiahas covered a range of topics. Without question,additional resources and advances are needed ineach of the domains covered. However, there aresome areas of particular urgency, either because ofits near absence in the current situation or becauseof its potential for widespread impact. In thisChapter, we will outline some areas that fall withinboth of these categories.

Epidemiological StudiesCurrently, there are no clear studies on the

number of individuals with autism in India. Moststudies and reports are based on the numbersreported in the USA and the UK. An importantneed is an epidemiological study that will providea clear indicator of the numbers affected, andthereby provide the push for action required.

Early Diagnosis and Early InterventionCurrent understanding of autism clearly

indicates the strong relationship between early

intervention and improved prognosis. Numerousstudies have documented the powerful effect ofearly intervention on later outcomes, whichinclude gains in language, social skills, functionalskills, and inclusion in regular classrooms.However, early intervention can only take place ifthere is early diagnosis, and that in turn can happenonly when sufficient number of medicalprofessionals have the requisite knowledge, theexposure, as well as the tools to provide thatdiagnosis. Because many children in India do notreceive an accurate and early diagnosis, any scopeof achieving their potential is destroyed.

The pioneering study by Dr. Simon Baron-Cohen, Jane Allen and Christopher Gillberg (1992)using Checklist for Autism in Toddlers (CHAT)demonstrated that it is possible to detect autism intoddlers at 18 months and is effective too. It isessential that a broad spectrum of professionals aremade aware so as to ensure accurate and earlydiagnosis. Work has to begin on providinginformation on screening for developmentaldisabilities as well as a better referral process to allprofessionals who may play a role in diagnosis, aswell as those who could aid in screening. Thisincludes general medical practitioners as much aspsychiatrists and paediatiricians, community healthworkers, educators, psychologists, CBR workers,personnel in Child Guidance Clinics and LocalLevel Committees set up by the National Trust, tolist a few.

Chapter 9

Future Perspectives

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Societal Attitudes

There is, of course, the issue of societalattitudes. In October 2006, an 11-year old childwith autism was not allowed to board an airplanedue to an outdated law on mental illness. Thisincident is just one example of how lack of publicawareness impacts families of children with autismthroughout India. Negative attitudes oftenpermeates the understanding of the best ofprofessionals. When we speak of a disability as a‘problem’ and speak of ‘hope’ in treatment we startoff with a negative perception. And this is theperception that colors all that happens with thechild. For societal perceptions to start changing,perhaps the lead has to come from those who areseen to be the leaders in the field of disability.

Awareness about Autism SpectrumDisorders has increased significantly since the1960s, yet even today policy makers and educationand health professionals not directly involved inthe field of Autism Spectrum Disorder may havelimited knowledge of these disorders. Ongoingeducation and awareness programs about the needsof children and adults with an Autism SpectrumDisorder, and the possibilities for intervention andeffective treatment is critical.

Well-Informed Health ProfessionalsCurrently, medical textbooks have little

information on autism. Experience in the sectorsuggests that medical textbooks need to be updatedwith information not only on autism, but alsodevelopmental disabilities in general, so that earlyscreening and diagnosis enables children to receivethe support they need on time. Lack of adequateinformation also impacts on advocacy as medicalprofessionals have a very important voice in policyissues. This is therefore an area that requires urgentaction.

There continues a strong bias towards a beliefin parental neglect leading to autism, as well as acontinuing bias towards a medical model oftreatment. Families often make repeated trips tohospital clinics while the child loses crucial learningyears. An emerging area is biomedicalinterventions, which may in some cases play a rolein treatment for autism. However, because of theease of implementation (in contrast to educationalapproaches), biomedical interventions are slowly,and inappropriately, taking over as the primetreatment in many cases. There is urgent need fora well informed medical fraternity that can helpdirect practitioners in the right direction.

Interventions

Current understanding indicates thatteaching based on behavioral models are the mosteffective treatment options. However, suchinterventions are effort intensive and take a greatdeal of planning, monitoring and hard work, andcan seem less inviting then other interventions.However, behavior based education must be thefocus for the future, since it is the onlydemonstrated intervention that will enableindividuals with autism lead as inclusive a life aspossible.

Evaluation of treatment options is thereforeurgently required. A few organisations in the fieldhave the expertise to do so and with adequatefunding could carry out randomized controlledstudies on treatment options.

The focus of early intervention for childrenwith autism too has to be reviewed. In the Indianschool system, with the focus on academics asopposed to all round development, earlyintervention for children with autism too has anexcessive focus on academic work. Since this doesnot address the different learning styles of the

34

autistic learner, it makes it less likely that childrenwill be successfully mainstreamed. Wider and moreintensive dissemination of information on teachingthe student with autism will have to be undertaken.

Support to government schools – wheremost of the country’s children study – forincluding children with autism needs moreattention. Checks and balances have to be put inplace to ensure that children with autism are notasked to leave private schools because of theirdiagnosis.

In the coming years, social understanding hasto find adequate place in curriculum for the autisticlearner. AFA’s experience has shown that for thosewho complete mainstream education but haveinterpersonal difficulties, training in socialunderstanding as well as work place etiquette andrules is imperative. In addition, vocational trainingfor persons with autism is extremely limited inIndia and needs urgent attention.

Training of Professionals as HolisticPractitioners

In the West, particularly in the US, there canat times be a bias towards one or another form ofintervention, leading to an ‘ours versus theirs’syndrome. The fact is that we can step outside thatsyndrome, see what is best in each methodologypropagated, and use it to the advantage of ourchildren. And therefore, unlike the US, fromwhom we borrow most of our treatment options,we do not have to have professionals who onlypractice ‘Treatment A’ versus ‘Treatment B’. Ratherour focus, and the focus of training, has to be aclear understanding of Treatment ‘A’, ‘B’ and ‘Z’;an understanding of which ‘Treatment’ is beneficialfor which child; and at what stage of itsdevelopment. To understand, for instance, at whichstage must communication therapy be the primefocus versus teaching independent work skills, or

an understanding of social rules. Thereby lies theimportance of training professionals as holisticpractitioners.

Therefore, in the long run, the need for thesector is for teachers with a holistic approach.Despite growing middle class affluence, a largesegment of the population in India is of limitedmeans. The requirement for such families is forone-stop therapists. For autism, this means teacherswho understand the distinct learning andbehavioral characteristics, and the atypical cognitiveand social development and behaviors, inindividuals with autism; teachers who have acomprehensive understanding of autism andautism-specific techniques, and who can approachstudents with a trans-disciplinary approach. Andteachers who, along with special education, haveclarity on behaviour management techniques, andunderstanding of social development and languagedevelopment, as well as family counseling. Iffamilies can encounter such teachers, they will nothave to run from therapist to therapist for receivinga range of specialised interventions.

This is where the value of the RCI’sDSE (ASD) training lies. This training can producewell rounded teachers who can address differentareas of concern of parents as it focuses on creatinga group of professionals who can be the centralpivot of services. The start of the training has beenslow but steady. So far around 200 teachers havebeen trained. There is a huge demand for thetrainees who pass out. As interest in autism growsand more students with a background indevelopmental psychology and child developmentget interested in this enigmatic disorder, what isrequired next is an intensive practice-oriented post-graduate training to tap this potential group ofpractitioners.

35

Parent TrainingEven the most intense and regular training

will not ensure enough practitioners for all thechildren with autism in India. When a child isdiagnosed with an Autism Spectrum Disorder,their parents or primary carers must becomeexperts overnight in order to effectively supportand advocate on behalf of their child. The optionthen is to inform, and train parents so that they areempowered to become competent caregivers.Parent training has an important and equal role infuture prognosis.

Further, with the exception of a few parent-initiated support groups, few families of childrenwith disabilities in India have access to mentalhealth professionals or an outlet for their ownfeelings of grief and helplessness is an urgent need.

There is urgent need for services to supportparents with coping strategies to deal with the stressof parenting a child with autism.

Rights and Self AdvocacyAwareness about Autism Spectrum

Disorders has increased significantly since the1980s. However, policy makers and healthprofessionals still have limited knowledge of thesedisorders unless they are directly involved in thefield. Therefore Non-Government Organisationswill have to continue to play an important role inadvocating for the right of those with autism.Informing policy makers as well as society at largewill need to be intensified. If policy makers areeffectively informed they will be able to take well-informed decisions. For effective framing ofpolicies as well as implementation, a sustainedpartnership between a proactive government and

NGOs can be extremely effective and fruitful andneeds to be given emphasis.

The range of opinions expressed regardingthe listing autism in the Persons With DisabilitiesAct are determined by each holder’s perception ofautism. Autism may or may not be marked byintellectual impairment. People with autism havecomplex needs which if well understood wouldhighlight the need for inclusion in the Act. Despitethe large number of individuals with autism in thecountry and the sharp increase in the numbersbeing diagnosed, children who are included inmainstream classrooms will continue to be askedto leave as soon as they receive a diagnosis. Otherswho have difficulties with motor coordination willcontinue to be refused permission to usecomputers to write for their exams. There willcontinue to be discrimination in public places. Thefact that the PWD Act is silent on autism willcontinue to be used in justification. Inclusion inthe Act can help push for changes in the above areasand can in fact facilitate societal change.

That the inclusion in the PWD Act can helppush for educational reforms is the strongestargument in its favor. A number of individuals withautism have the ability to be self advocates. Theimpact of personal accounts by individuals such asTemple Grandin, Stephen Shore, Gunilla Gerland,Wendy Lawson, Ros Blackburn on ourunderstanding of autism, has been invaluable. Yetunless they have the opportunity to develop theirfull potential, few will have the ability to speak forthemselves. All over the developed world,individuals with autism are becoming a vocalgroup, speaking up for their rights. India too needsto move in that direction.

Experts who contributed to the section on AutismMs. Merry Barua (Editor) Dr. Tamara C. Daley

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