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Title Page (Short Communication)

Title of paper: Early identification of autism in India

Author: Chakrabarti S !"CP #"CPC$ Pratibandhi %alyan %endra %eota $ooghly & 'engal

Author details: (ame:Suniti Chakrabarti Address: Pratibandhi %alyan %endra Abinash !ukher)ee "oad P* + ,ist- $ooghly &est 'engal PI( ./0/12 Telephone: (122) 032/ 042560235 Email: sunit7doctors-org-uk

Source of funding: (one Competing interests: (one &ord count: 00/.

Early identification of autism88888--

Abstract This study 9as carried out to determine the nature and timing of parents: initial concern and their subse;uent help seeking beha<iour to suggest 9ays to facilitate early identification of autismInter<ie9s using the introductory part of Autism ,iagnostic Inter<ie9="e<ised 9ere carried out 9ith parents of children 9ith autismConcern about speech and language de<elopment 9as the commonest early concern of parents of children subse;uently diagnosed 9ith autismThe mean age of parental recognition of any de<elopmental problem 9as 02-5 months- The mean time lag from first recognition of problem to seeking professional help 9as 5 months and to diagnosis 9as 20 monthsIn 34> of cases the first professional parents consulted 9as a child specialist-

Key words: Autism early diagnosis pediatrician:s role

Introduction Autism is a se<ere de<elopmental disorder characterised by marked impairment of reciprocal social interaction language and communication and repetiti<e6stereotypic beha<iour (/)There are no epidemiologic studies of pre<alence of autism and other per<asi<e de<elopmental disorders (P,,s) in India- $o9e<er it is recognised that autism is an important problem in our children and there is a need for more research in this field (0 2)Some pertinent ;uestions about autism that need ans9ers are ho9 to diagnose autism as early as possible and 9hat is the role of the pediatrician in early diagnosis of autism in India? The importance of ans9ers to these ;uestions deri<e from the fact that as yet there are no @cures: for autism but there is general consensus that early diagnosis follo9ed by appropriate early inter<ention is crucial to produce the best long term outcome for children 9ith autism (A)Methodology: A sur<ey 9as conducted in special schools and clinics among parents of children diagnosed 9ith autism in &est 'engal- Parents 9ere gi<en 9ritten as 9ell as <erbal information about the sur<ey and informed 9ritten consent 9as obtained for inclusion of their children in the study#or all children in the study detailed medical and de<elopmental history 9as taken focussing on autistic symptomatology and e<olution of autistic beha<iours as 9ell as eliciting any history of de<elopmental regression!a)ority of the children in the study had recei<ed the diagnosis of autism from one of the national centres (I!$A(S in 'angalore or the Christian !edical

College at Bellore- "esults of these assessments 9ere studied- #or the rest of the children direct obser<ation 9as carried out and the teachers 9ere consulted about their eCperience and kno9ledge of the children- ,iagnosis of autism 9as made in both groups according to ,S! IB criteria on the basis of all collated informationThe introductory part of the Autism ,iagnostic Inter<ie9 ("e<ised) (3) 9as used 9ith parents to elicit rele<ant information about the age at 9hich parents first noticed something abnormal in their child:s de<elopment the nature of these concerns the age at 9hich parents first sought ad<ice 9ho they sought ad<ice from etc- &e also sought additional information rele<ant to the studyA total /A0 sets of parents 9ere approached 9hose children had a diagnosis of autism- *f the /A0 inter<ie9s a total of // cases 9ere eCcluded from further analysis- The reasons for eCclusion 9ere incomplete inter<ie9 (0) non=fulfilment of age criteria (/) and non=fulfilment of ,S! IB diagnostic criteria for autism (4 cases)- There 9ere thus /5/ children 9ho 9ere considered to be 9ithin the autism spectrumStatistical analysis of the results using a multi<ariate Deneral Einear !odel retaining a p=<alue of 1-1A as the le<el of significance 9as carried out- Post= hoc 'onferroni tests and t tests 9ere used to further in<estigate significant resultsAge of first concern and age of consultation 9ere used as dependent <ariables- (ature of first concern (speech problem medical6de<elopmental problem socially isolated beha<iour general beha<iour problem and autistic beha<iour) child:s gender mother:s education le<el and child:s <erbal le<el 9ere used as factors-

Results: The main characteristics of the sur<eyed children are gi<en in table /The cause of parents: first concern in A.> of cases of autism 9as absence significant delay or oddity in their child:s speech and language de<elopmentIn a further 03> of cases speech problem 9as the second most important concern for parentsThus for 42> of parents problem in their children:s speech and language de<elopment 9as one of the earliest concerns 9hich made them think that there 9as something not ;uite right about their children:s progress and made them seek help- Barious medical concerns follo9ed by concerns about odd social beha<iour as 9ell as beha<iour problems not related to autism such as hyperacti<ity sleep problem etc- and autistic type beha<iour 9ere other initial concerns (table 0)The mean age of first concern 9as at 02-5 months (S, //-2)- The time lag from first concern to seeking help (mean age 0.-.m) 9as around 5 monthsThere 9as a further gap of 0.-A months to e<entual diagnosis of autism (mean age AA-0m)In 34> (F3 out of /5/) of our sample concerned parents first turned to the pediatrician for help and ad<iceStatistical analysis re<ealed a significant effect due to first concern reported for age of concern #G5-240 pH1-11A for age of consultation #G.-210 pH1-11AThese results 9ere further in<estigated using post=hoc 'onferroni tests- This sho9ed a significant effect both for age of first concern (/0-44 months <s 03-A1 months pH1-11A) and age of consultation (/A-F3 months <s 2/-15

months

pH1-11A) respecti<ely for children sho9ing medical problems

compared to other childrenDiscussion: *ur study sho9ed a significant delay of 20 months bet9een parents: first recognition of a problem in their child:s de<elopment and e<entual diagnosis of autism- This is a <ery important time and a 9indo9 of opportunity for early inter<ention lost by the child and family- *ur study also sho9ed that the pediatrician occupies an important position in any effort to minimise this delay as in a large ma)ority of cases parents turn to the pediatrician first 9ith their concern,elay and6or de<iance in speech and language de<elopment appear to be the commonest presentation of children 9ith autism- Infortunately speech delay is also common in young children 9ho are not autistic- The important difference is that in cases of autism speech delay is al9ays associated 9ith other indications of difficulty in social relatedness or peer interaction or play and6or repetiti<e6stereotypic beha<iours- These beha<iours may be subtle and may not be immediately apparent in a brief clinic <isit and need to be specifically in;uired into- Parents are good obser<ers of their children- They may not be a9are of the significance of these beha<iours but 9ould come forth 9ith good descriptions of the rele<ant beha<iours if they are present in their childrenTo make sense of these beha<iours it is important for the pediatrician to be kno9ledgeable about autism and its early presentation and kno9 9hat beha<iours to specifically look for-

&hat this study adds: *ne of the commonest modes of presentation of autism in childhood is 9ith delay and6or de<iance of speech and language de<elopment- In ma)ority of cases parents consult the pediatrician first 9ith their concern- It is important to for the pediatrician to be kno9ledgeable about autism and its early presentation and be able to elicit rele<ant information for early identification-

Acknowledgements: I 9ould like to eCpress my gratitude to all the parents and children in the studyI am <ery grateful to !r Subrata 'anner)ee ,irector of Pratibandhi %alyan %endra 9ho pro<ided inspiration and practical support for the 9ork!y special thanks to !rs Anindita Chatter)ee Chief Psychologist !ano<ikas %endra !rs !allika 'anner)ee ,irector of Pradip as 9ell as to the $eads of the follo9ing centres "each at %olkata Child Duidance Centre at Srirampur

S9ambhar at 'urd9an Shelter at 'hadres9ar $ope at ,urgapur Anandam at Asansol Doodricke School at Siliguri and Ashar Alo at 'ar)ola 'irbhum-

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Table I

Sample features (umber Percentage

Sex !ale #emale Medical condition Children 9ith epilepsy Children 9ithout epilepsy !erall language le!el of child Berbal (on <erbal Mother"s #ducation $e!el Ini<ersity graduate $igher secondary school le<el Secondary le<el School le<el %irth order of child #irst born Second born Third born &amily si'e *ne child T9o children Three children Religious background of family 40 A0 A AF > 2. > 5> /1. 21 0 .. > 00 > /> /1/ 02 /1 A .0-3 > /3-A > .> 5> 3F .1 5F-3 > A1-2 > 0F //0 0/ > .F > /// 21 .4-. > 0/-0 >

/2

$indu !uslim Christian

/24 / 0

F4 > 1-. > /-5 >

Table II &irst (rofessional consulted by (arents

/5

(umber Pediatrician Psychologist Psychiatrist (eurologist *ther (E(T Deneral physician $omeopath) 0/ F3 4 2 /2

Percentage 34 > A-3 > 0> F-0 >

/5-4 >

)rofessional making the diagnosis of autism Pediatrician Psychologist Psychiatrist (eurologist 0. 51 53 F /F > 04 > 20-3 > 3-2 >

*ther (E(T Specialist Speech Therapist Teacher) /F /2-5 >

Table III Initial sym(toms to raise (arental concern

/A

(umber /- ,elay6de<iance in speech6language 0- !edical problem (such as seiLures) or delayed milestones (other than speech) 2- Abnormal socio=emotional response 5- 'eha<iour difficulty not specific to autism (sleep problem high le<el of acti<ity etc) A- Autistic beha<iour /1 4 0. /5 4/

Percentage A. >

/F > /1 >

.> A-3 >