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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: /118

Early identification of autism99999--

Abstract This study :as carried out to determine the nature and timing of parents; initial concerns and their subse<uent help seeking beha=iour to suggest :ays to facilitate early identification of autism in IndiaIntroductory part of Autism ,iagnostic Inter=ie:>"e=ised :as used to elicit rele=ant information from parents of children :ith autismConcern about speech and language de=elopment :as the commonest early concern of parents of children subse<uently diagnosed :ith autismThe mean age of parental recognition of any de=elopmental problem :as 02-5 months- The mean time lag from first recognition of problem to seeking professional help :as 5 months and to diagnosis :as 20 monthsIn 34? of cases the first professional consulted :as 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=e beha=iour (/)There are no epidemiologic studies of pre=alence of autism and other per=asi=e de=elopmental disorders (P,,s) in India- $o:e=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 ans:er are ho: to identify autism as early as possible and :hat is the role of the pediatrician in India in this process@ The importance of ans:ers to these <uestions deri=e from the fact that as yet there are no Acures; for autism but there is general consensus that early diagnosis and early inter=ention are crucial for the best long term outcome of children :ith autism (5 B)Methodology: A sur=ey :as conducted in special schools and clinics in &est 'engal among parents of children (1>/4 years) diagnosed :ith autism (mean age 4-8 years S, 2-5)- &ritten and =erbal information about the sur=ey :ere gi=en to parents :ho ga=e informed :ritten consent for inclusion of their children in the study,etailed medical and de=elopmental history :as taken of all children in the study focussing on autistic symptomatology and e=olution of autistic

beha=iours including any history of de=elopmental regression-

A significant number of the children in the study :ere diagnosed :ith autism in one of the national multidisciplinary centres (I!$A(S in 'angalore or the Christian !edical College at Cellore ((D30)- "esults of these assessments :ere studied- #or the rest of the children further direct obser=ation :as carried out and the teachers :ere consulted about their eEperience and kno:ledge of the children- ,iagnosis of autism :as made in both groups according to ,S! IC criteria (/) on the basis of all collated informationThe introductory part of the Autism ,iagnostic Inter=ie: ("e=ised) (3) :as used :ith parents to elicit rele=ant information about the age at :hich parents first noticed something abnormal in their child;s 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 rele=ant informationA total /B0 sets of parents :ere inter=ie:ed :hose children had a diagnosis of autism- *f these /B0 // cases :ere eEcluded from further analysis- The reasons for eEclusion :ere incomplete inter=ie: (0 cases) non>fulfilment of age criteria (/ case) and non>fulfilment of ,S! IC diagnostic criteria for autism (4 cases)- There :ere /5/ children :ho :ere considered to be :ithin the autism spectrumStatistical analysis of the results using a multi=ariate Feneral Ginear !odel retaining a p>=alue of 1-1B as the le=el of significance :as carried out- Post> hoc 'onferroni tests and t tests :ere used to further in=estigate significant resultsAge of first concern and age of consultation :ere 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 :ere used as factorsResults: The main features of the sur=eyed children are gi=en in table /The cause of parents; first concern in B.? of cases of autism :as absence significant delay or oddity in their child;s speech and language de=elopmentIn a further 03? of cases speech problem :as the second most important concern for parentsThus for 42? of parents problem in their children;s speech and language de=elopment :as one of the earliest concerns :hich made them think that there :as something not <uite right about their children;s progress and made them seek help- Carious medical concerns follo:ed by concerns about odd social beha=iour as :ell as beha=iour problems not related to autism such as hyperacti=ity sleep problem etc- and autistic type beha=iour :ere other initial concerns (table 0)The mean age of first concern :as at 02-5 months (S, //-2)- The time lag from first concern to seeking help :as around 5 months (mean age 0.-.m S, //-8)- There :as a further gap of 0.-B months to e=entual diagnosis of autism (mean age BB-0m S, 0B-3)In 34? (83 out of /5/) of cases 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 #D5-240 pH1-11B for age of consultation #D.-210 pH1-11B-

These results :ere further in=estigated using post>hoc 'onferroni tests- This sho:ed a significant effect both for age of first concern (/0-44 months =s 03-B1 months pH1-11B) and age of consultation (/B-83 months =s 2/-15 months pH1-11B) respecti=ely for children sho:ing medical problems

compared to other childrenDiscussion: This study sho:ed a significant delay of 20 months bet:een parents; first recognition of a problem in their child;s de=elopment and e=entual diagnosis of autism- This is =aluable time and a :indo: of opportunity for early inter=ention lost by the child and family- *ur study also sho:ed that the pediatrician occupies an important position in any effort to minimise this delay as in ma)ority of cases parents turn to the pediatrician first :ith their concern,elay and6or de=iance in speech and language de=elopment :ere the commonest presentation of children :ith autism- This is in line :ith findings from European and American studies (. 4)- Infortunately speech delay is also common in young children :ho are not autistic (8)- The important difference is that in cases of autism speech delay is al:ays associated :ith other indications of difficulty in social relatedness peer interaction play or repetiti=e beha=iours and also in non>=erbal communication such as gesture or eye contact (/1)- 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 a:are of the significance of these beha=iours but :ould come forth :ith good descriptions of the rele=ant beha=iours if they are present-

To make sense of these beha=iours it is important for the pediatrician to be kno:ledgeable about autism and its early presentation and kno: :hat beha=iours to look for-

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

Acknowledgements: I :ould like to eEpress my gratitude to all the parents and children in the studyI am =ery grateful to !r Subrata 'anner)ee ,irector of Pratibandhi %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 %olkata !rs !allika 'anner)ee ,irector of Pradip %olkata as :ell as to the $eads of the follo:ing centres "each at %olkata Child Fuidance Centre at Srirampur S:ambhar at 'urd:an Shelter at 'hadres:ar $ope at ,urgapur Anandam at Asansol Foodricke School at Siliguri and Ashar Alo at 'ar)ola 'irbhum-

References:

/- American Psychiatric association- ,iagnostic and statistical manual of mental disorders fourth edition (,S! IC) /885- &ashington ,C: American Psychiatric Association-

0- (air !%C- Autism spectrum disorders- Indian Pediatr 0115J 5/: B5/>B52-

2- Thacker (- Autism spectrum disorder- Indian Pediatr 011.J 55: 0B/>0B0

5- Furalnick !- The effecti=eness of early inter=ention- 'altimore !,: Paul $ 'rookes Publishing CoJ /88.

B- (ational "esearch Council Committee on Inter=entions for Children :ith Autism- Educating Children :ith Autism- &ashington ,C: (ational Academy PressJ 011/

3- Gord C "utter ! Ge Couter A- Autism ,iagnostic Inter=ie:>"e=ised: A re=ised =ersion of a diagnostic inter=ie: for caregi=ers of indi=iduals :ith possible per=asi=e de=elopmental disorder- K Autism ,e= ,isord /885J 05: 3B8>34B-

/1

.- Fiacomo A ,e #ombonne E- Parental recognition of de=elopmental abnormalities in autism- Eur Child Adolesc Psychiatry /884J .(2): /2/>/234!yers S Kohnson C and the Council for Children :ith ,isabilities-

!anagement of Children &ith Autism Spectrum ,isorders- Pediatrics 011.J /01(B): //30>//40-

8- !itchell S 'rian K L:aigenbaum G "oberts & SMatmari P Smith I et alEarly language and communication de=elopment of infants later diagnosed :ith autism spectrum disorder- K ,e= 'eha= Pediatr 0113J 0. (0 suppl): S38> .4-

//

Table I

Sample features

Age of children

!ean 4-8 years (umber

S, 2-5 Percentage .4-. ? 0/-0 ? 0/ ? .8 ? 58-3 ? B1-2 ?

!ale #emale Children :ith epilepsy Children :ithout epilepsy Cerbal (on =erbal Mothers Education 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 T:o children

/// 21 08 //0 38 .1

/1/ 02 /1 B

.0-3 ? /3-B ? .? 5?

/1. 21 0

.. ? 00 ? /?

40 B0

B8 ? 2. ?

/0

Three children Religious background of family $indu !uslim Christian

5?

/24 / 0

84 ? 1-. ? /-5 ?

/2

Table II #irst %rofessional consulted by %arents (umber Pediatrician Psychologist Psychiatrist (eurologist *ther (E(T Feneral physician $omeopath) 0/ /5-4 ? 83 4 2 /2 Percentage 34 ? B-3 ? 0? 8-0 ?

&rofessional making the diagnosis of autism Pediatrician Psychologist Psychiatrist (eurologist 0. 51 53 8 /8 ? 04 ? 20-3 ? 3-2 ?

*ther (E(T Specialist Speech Therapist Teacher) /8 /2-5 ?

/5

Table III Initial sym%toms to raise %arental concern (umber /- ,elay6de=iance in speech6language 0- !edical problem (such as seiMures) 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) B- Autistic beha=iour /1 4 .? B-3 ? 0. /5 /8 ? /1 ? 4/ Percentage B. ?

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