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Title Page (Research paper)

Title of paper: Listening to and acting on parents concerns: early identification of autism in India

Author:

Chakra arti !" #RCP" $RCPC%

Prati andhi &alyan &endra" &eota" %ooghly" ' (engal

Author details: )ame:!uniti Chakra arti Address: Prati andhi &alyan &endra" A inash #ukher*ee Road P+ , -ist. %ooghly 'est (engal" PI) /01023 Telephone: (233) 1430 153671346 8mail: sunit9doctors.org.uk

!ource of funding: )one Competing interests: )one 'ord count: 110/

Listening to and acting on parents concerns::::::

A stract Objective : This study ;as carried out to determine the nature and timing of parents initial concern and their su se<uent help seeking suggest ;ays to facilitate early identification of autism. Design: The study design ;as that of a sur=ey. Subjects and Setting: Children ;ith autism aged up to 05 years ;ere su *ects of the study. !u *ects ;ere identified in schools and clinics pro=iding ser=ices to children ;ith autism throughout 'est (engal. Method: !emi structured inter=ie;s using the introductory part of Autism -iagnostic Inter=ie;>Re=ised (A-I>R) ;ere carried out ;ith parents of children ;ith autism. Results: There ;ere 000 oys and 32 girls (Ratio" 3./:0) in the study ;ith mean age of 5.? years. The A-I>R identified four main classes of early eha=iour to

parental concerns in children ;ho ;ere later diagnosed as autistic" a) concerns a out speech and language" (n@50" A/B)" ) medical or

de=elopmental concerns (other than speech)" (n@14" 05B)" c) concern a out childs social interaction (n@06" 02B)" and d) autistic type 4B). The mean age of parental recognition of any de=elopmental pro lem ;as 13.6 months. $ollo;ing initial concern" in 45B of cases the first professional parents consulted ;as a child specialist. The mean time lag from first recognition of pro lem to seeking professional help (mean age 1/./m) ;as 6 months and to diagnosis (mean age AA.1m)" ;as 31 months. eha=iour (n@5"

Conclusion: A delay of 31 months et;een initial concern and su se<uent diagnosis of autism is unaccepta le. 'ider a;areness of autism and its typical early presentation may help child specialists" ;ho are often the first professionals consulted y parents" to narro; this gap significantly.

Key words: Autism" early diagnosis" early inter=ention" child specialists role

Introduction There has een a marked change in our =ie; of autism in India during the last doCen or so years. $rom a position of only three decades ago ;hen it ;as contended that autism" if it occurs at all" is at est eDtremely uncommon in India (0)" to an increasing recognition that autism is a =ery important" common and serious de=elopmental pro lem in our children" the *ourney has rapid. Currently there are no epidemiologic studies on the pre=alence of autism and other per=asi=e de=elopmental disorders (P--s) in India. %o;e=er there is no reason to elie=e that the figures are likely to e significantly different from pre=alence figures in E& or E!A. Thus it may not e too far fetched to assume that the generally accepted een

pre=alence figure of per=asi=e de=elopmental disorders" 42 per 02222 (1" 3)" may also apply to India. This ;ould mean that there are up to 4 million people ;ith autism and other per=asi=e de=elopmental disorders in this country. This gi=es an indication of the magnitude of the pro lem that needs addressing. $ortunately a =ery encouraging eginning has een made in scientific studies of autism in India. !tarting ;ith a trickle of research from the late se=enties and eighties (6" A)" the pace of autism studies in India has percepti=ely <uickened recently. The Indian Academy of Pediatrics (IAP) has taken a commenda le lead in this area ;ith t;o timely eDhortations from successi=e presidents of the academy a out the national importance of the pro lem (4" /).

)ota le recent ;ork in India on autism and other per=asi=e de=elopmental disorders has een pu lication of research y &ar and &ar (5)" #alhotra and Fupta (?)" !inghi and #alhi (02)" -aley (00) and others. A fe; case series of children ;ith autism ha=e also appeared in the literature detailing the eDperience of the issue in tertiary medical centres in India (01" 03). +f the numerous <uestions a out autism that need urgent ans;ers" one of the most pertinent is ho; ;e diagnose autism as early as possi le in India. -oes autism present in the same ;ay and is parental recognition of autism in India similar to that of their counterparts in 8urope or America (06) and ho; does our health system respondG The importance of ans;ers to these <uestions o =iously deri=e from the fact that as yet there are no Hcures for autism ut there is general consensus that early diagnosis follo;ed y appropriate early inter=ention is crucial to produce the est long term outcome for children ;ith autism (0A). Methodology: The study ;as conducted among parents of children diagnosed ;ith autism and other P--s throughout 'est (engal. The children ;ere selected through a series of steps. !pecial schools and clinics in the main ur an and some semi ur an and rural centres in 'est (engal ;ere identified through personal approaches and through a net;ork of kno;ledgea le informants as likely to pro=ide ser=ices to children ;ith autism. The heads of these schools and clinics ;ere approached and the purpose of the study eDplained. 'ith the permission of the school or clinic authorities" parents ;ere approached indi=idually. 'ritten as ;ell as =er al information ;as gi=en to the parents

a out the study and any <ueries ans;ered. Informed ;ritten consent ;as o tained from parents for inclusion of their children in the study. Children ;ith diagnosis of autism ;ere di=ided into t;o main groups. The main ulk of the children ;ho had een diagnosed locally ;ith autism had their diagnosis

=erified at a nationally recognised multidisciplinary centre ;hich ;as either the )ational Institute of #ental %ealth and )euro !ciences ()I#%A)!) in (angalore or the Christian #edical College at Iellore in Tamil )adu or they had een seen y a recognised eDpert in &olkata ;ith considera le clinical eDperience of assessing autistic children. )o attempt ;as made to reassess these children ut for all children a irth history and a medical and

de=elopmental history ;as taken focussing on autistic symptomatology and e=olution of autistic eha=iours as ;ell as eliciting any history of

de=elopmental regression. $or the rest of the children" along ;ith history taking" rief direct o ser=ation of the children ;as carried out and the

teachers ;ere consulted a out their eDperience and kno;ledge of the children. $or the parent inter=ie;" the Autism -iagnostic Inter=ie;>Re=ised (A-I>R) (04)" ;as used. A-I>R is a semi structured inter=ie; ;ith parents or care gi=ers of children ;ith autism to elicit information a out the three specific areas of de=elopmental deficit" namely in social interaction" language and communication and repetiti=e7stereotypic eha=iour ;hich are the hallmark of autism. The A-I>R uses an algorithm to analyse the scores o tained from the inter=ie; ;hich is consistent ;ith diagnostic criteria of autism according to oth IC->02 (0/) and -!# II (05). The introductory part of the A-I>R contains <uestions a out the age at ;hich parents first noticed something

a normal in their childs de=elopment" the nature of these concerns" the age at ;hich parents first sought ad=ice" ;ho they sought ad=ice from etc. 'e also sought additional information rele=ant to the study. A total 0A1 sets of parents ;ere approached ;hose children had a diagnosis of autism. The ma*ority of respondents ;ere mothers alone. In a smaller num er of cases either oth parents or only the fathers ;ere present. +f the 0A1 inter=ie;s" a total of 00 cases ;ere eDcluded from further analysis. The reasons for eDclusion ;ere" incomplete inter=ie; (1) and non>fulfilment of age criteria (0). A further 5 cases" on collation of all rele=ant data" ;ere considered not to e autistic. +f these" one girl had mental retardation ;ith likely Prader 'illi syndrome and one child had cere ral palsy ;ith mental retardation. A further siD children had se=ere mental retardation ;ith some autistic features. There ;ere thus 060 children ;ho ;ere considered to e ;ithin the autism spectrum. Results: The salient features of the sample are sho;n in ta le 0. The mean age of the children ;as 5.? years (!- 3.6). !eD ratio of oys and girls ;as 3./:0. +ne in fi=e study children had history of epilepsy ;hich sho;ed a imodal distri ution. A smaller group of 02 children had early onset se=ere epilepsy. +f these" 1 children had se=ere neonatal fits" 6 had infantile spasm and another 6 children suffered from se=ere unclassified fits of infancy. A larger group of 0? children had onset of fits in middle or late childhood. The cause of parents first concern in A/B of cases ;as a sence" significant delay or oddity in their childs speech and language de=elopment. %o;e=er in

a further 14B of cases speech pro lem ;as the second most important concern for parents. Thus for 53B of parents" pro lem in their childrens speech and language de=elopment ;as one of the earliest concerns ;hich made them think that there ;as something not <uite right a out their childrens progress and made them seek help. Iarious medical concerns" follo;ed y concerns a out odd social eha=iour as ;ell as eha=iour pro lems not related to autism" such as hyperacti=ity" sleep pro lem etc. and autistic type eha=iour ;ere other initial concerns. The mean age of first concern ;as at 13.6 months (!- 00.3). The time lag from first concern to seeking help (mean age 1/./m) ;as around 6 months. There ;as a further gap of 1/.A months to e=entual diagnosis of autism (mean age AA.1m). In 45B (?4 out of 060) of our sample" concerned parents first turned to the child specialist for help and ad=ice. 022 (/1B) of the 03? mothers in our sample ;ere uni=ersity graduates. There ;as only 0 #uslim child and 1 Christian children in our sample. Rest of the children ;ere of %indu religion. !tatistical analysis of the results using a multi=ariate Feneral Linear #odel" retaining a p>=alue of 2.2A as the le=el of significance" ;as carried out. Post> hoc (onferroni tests and t tests ;ere used to further in=estigate significant results. Age of first concern and age of consultation ;ere used as dependent =aria les. )ature of first concern (speech pro lem" medical7de=elopmental pro lem" socially isolated eha=iour" general eha=iour pro lem and autistic

eha=iour)" childs gender" mothers education le=el and childs =er al le=el ;ere used as factors. The analysis re=ealed a significant effect due to first concern reported" for age of concern" $@6.351" pJ2.22A" for age of consultation" $@/.321" pJ2.22A. These results ;ere further in=estigated using post>hoc (onferroni tests. This sho;ed a significant effect oth for age of first concern (01.55 months =s

14.A2 months" pJ2.22A) and age of consultation (0A.?4 months =s 30.26 months" pJ2.22A) respecti=ely for children sho;ing medical pro lems compared to other children. There ;as also significant difference in age of first consultation et;een

children sho;ing speech pro lem and those ;ith socially isolated eha=iour" 1A.6? months =s 1?./0 months" pJ2.2AK and et;een those ;ith general

eha=iour pro lem and speech pro lem" 30 =s 1A.6? months" pJ2.2AK as ;ell as et;een general eha=iour pro lem and those children sho;ing autistic eha=iour" 30 =s 1A.01 months" pJ2.2A.

Discussion: +ur study sho;s that there is a significant delay of 31 months et;een

parents first recognition of a pro lem in their childs de=elopment and e=entual diagnosis of autism. This is =ery important time and a ;indo; of opportunity for early inter=ention lost y the child and family. +ur study also sho;s that the paediatrician occupies an important role in any effort to minimise this delay as in large ma*ority of cases parents turn to the paediatrician first ;ith their concern.

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-elay and7or de=iance in speech and language de=elopment appear to e the commonest presentation of children ;ith autism. Enfortunately speech delay is also common in young children ;ho are not autistic. %o;e=er speech pro lem associated ;ith any indication of difficulty in social relatedness or peer interaction7play ;ould call for a thorough assessment to eDclude a per=asi=e de=elopmental disorder. It is interesting to note that in our sample" parents first ecame a;are of a pro lem in their childs de=elopment at mean age of 13.6 months ;hich is a out 6 months later than in a similar study of (ritish parents (06). This does not appear to e an isolated finding as Tamara -aley in her study of autism in four metropolitan cities of India (00) sho;ed mean age of parental recognition of 1A./ months. These figures point to a possi le lack of ade<uate kno;ledge and a;areness of early child de=elopmental processes and milestones in our young parents and is an important educational issue. The other point of note is that in the ;hole sample there ;ere only t;o children ;ith diagnosis of Asperger syndrome and none ;ith atypical autism or per=asi=e de=elopmental disorder" not other;ise specified (P--")+!). Current diagnostic practice in India appears to e picking up mostly children at the se=ere end of the spectrum and not the milder P--s. 'e need to point out some limitations of our study. +ur sample represents a select population of children in 'est (engal. The =ery fact that /1B of our mothers are uni=ersity graduates in a state ;here the female literacy rate is a dismal 42B (1220 census)" (0?)" tells it its o;n story. The sample also sho;s =ery poor representation of the minority community" particularly of the #uslim

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community of 'est (engal. Thus there is only one #uslim child in our sample against a share of #uslim population of 'est (engal of 1AB (1220 census)" (0?). +n the face of it this appears to e a methodological pro lem in sample

selection gi=ing rise to a =ery iased sample. +ne likely source of ias could e that the largest ulk of the sample ;as recruited from ur an areas. This might ha=e influenced the distri ution of education le=el of mothers ecause of likely rural>ur an di=ide in female literacy in the state. Also" a num er of facilities from ;hich children ;ere recruited charged a fee from parents. This ;ould also tend to restrict their intake to middle class families ;ith a ility to pay. %o;e=er methodological pro lems may not e the ;hole eDplanation here. 8Dpertise to assess and diagnose children ;ith autism is only a=aila le in a fe; places in 'est (engal. #ost of this eDpertise is in pri=ate fee paying ser=ice and not in the free or relati=ely cheap state sector. Accessing this ser=ice needs financial as ;ell as educational and social resources ;hich are currently eyond the reach of =ast num er of families. %ence autism at

present appears to e a condition afflicting mostly middle class children. This is clearly an artificial situation as there is no reason to elie=e that children from poorer ackground are immune to autism. They are at present simply not diagnosed and are most likely to e lumped ;ith the large undifferentiated

group of children classed as mentally handicapped. This also appears to e the situation ;ith respect to milder non>autism P--s. The situation is in fact not too dissimilar to the situation in E& or E!A" couple of decades ago.

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+ur sample also sho;s =ery poor representation of the #uslim children (0 child out of 060). This again does not appear to e an isolated finding since in the earlier <uoted study of -aley" in an India ;ide sample of ?5 children" there ;ere only 3 #uslim children diagnosed as autistic. -isad=antaged children in the #uslim community are a minority ;ithin a minority and may e ha=ing the ;orst of oth ;orlds. 'e must gi=e careful consideration as to ho; the needs of all our children" ;ithout eDclusion" may e addressed.

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&ey messages:

'hat is already kno;n: Autism is not uncommon in India. (oth early diagnosis and early inter=ention are crucially important for the est long term outcome of children ;ith autism. %o;e=er" there is often a significant time lag et;een parents recognition

that there is a pro lem in their childs de=elopment and the diagnosis of autism" causing delay in inter=ention.

'hat this study adds: +ne of the commonest modes of presentation of autism in childhood is ;ith delay and7or de=iance of speech and language de=elopment. In the =ast ma*ority of cases parents consult the child specialist first ;ith their concern. It is =itally important to listen to and act on parents concerns and if necessary" get specialist help early rather than reassure parents erroneously.

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Acknowledge ents: I ;ould like to eDpress my gratitude to all the parents and children in the study ;ithout ;hose help and support this research ;ould not ha=e een possi le. I am =ery grateful to #r !u rata (anner*ee" -irector of Prati andhi &alyan &endra" ;ho pro=ided inspiration and practical support for the ;ork. #y special thanks to #rs Anindita Chatter*ee" Chief Psychologist" #ano=ikas &endra" #rs #allika (anner*ee" -irector of Pradip as ;ell as to the %eads of the follo;ing centres" Reach at &olkata" Child Fuidance Centre at !rirampur" !;am har at (urd;an" !helter at (hadres;ar" %ope at -urgapur" Anandam at Asansol" Foodricke !chool at !iliguri and Ashar Alo at (ar*ola" (ir hum.

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"able I

!ample features )um er Percentage

Se# #ale $emale Medical condition Children ;ith epilepsy Children ;ithout epilepsy Overall language level o! child Ier al )on =er al Mother$s %ducation &evel Eni=ersity graduate %igher secondary school le=el !econdary le=el !chool le=el 'irth order o! child $irst orn !econd orn Third orn (a ily si)e +ne child T;o children Three children 51 A1 A A? B 3/ B 6B 02/ 32 1 // B 11 B 0B 020 13 02 A /1.4 B 04.A B /B 6B 4? /2 6?.4 B A2.3 B 1? 001 10 B /? B 000 32 /5./ B 10.1 B

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Religious background o! !a ily %indu #uslim Christian 035 0 1 ?5 B 2./ B 0.6 B

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"able II (irst *ro!essional consulted by *arents )um er Pediatrician Psychologist Psychiatrist )eurologist +ther (8)T" Feneral physician" %omeopath) +ro!essional Pediatrician Psychologist Psychiatrist )eurologist 10 aking the diagnosis o! autis 1/ 62 64 ? 0? B 15 B 31.4 B 4.3 B 06.5 B ?4 5 3 03 Percentage 45 B A.4 B 1B ?.1 B

+ther (8)T !pecialist" !peech Therapist" Teacher) 0? 03.6 B

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"able III Initial sy *to s to raise *arental concern )um er 0. -elay7de=iance in speech7language 1. #edical pro lem (such as seiCures) or delayed milestones (other than speech) 3. A normal socio>emotional response 6. (eha=iour difficulty not specific to autism (sleep pro lem" high le=el of acti=ity etc) A. Autistic eha=iour 02 5 /B A.4 B 1/ 06 0? B 02 B 50 Percentage A/ B