[TO BE PUBLISHED IN THE EXTRAORDINARY PART -! SECTION 4 GAZETTE OF INDIA] MINISTRY OF SOCIAL JUSTICE AND EMPOWERMENT DEPARTMENT OF EMPOWERMENT OF PERSONS WITH DISABILITIES NOTIFICATION New Delhi- 25" April 2016 Subject: Guidelines for evaluation and assessment of Autism and procedure for certification No, 16-21/2013-DD-IIl- Autism has been recognized as one of the disabilities under Section 2 of the National Trust Act, 1999 read with the Persons with Disabilities (Equal Opportunities Protection of Rights and Full Participation) Act, 1295 (PwO Act). The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 provides for the constitution of National Trust for the welfare of this class of persons with disabilities. Thus the guidelines for evaluation of various disabilities and procedure for certification notified by the Ministry on 1.06.2001 covers only the categories of disabilities identified in the PwD Act and do not cover certification of Autism. The State Governments on this reasonable ground are not issuing Disability Certificate to persons with autism. 2 In order to frame guidelines for evaluation and assessment of Autism and procedure for certification, as given in the Ministry of Health and Family Welfare's O.M. (F.No. Z-28020/106/2014-CH-RBSK) dated 9" July 2014 and to recommend appropriate modifications/alternations keeping in view Persons with Disabilities (Equal Opportunities Protection of Rights and Full Participation) Act, 1995, the Ministry of Social Justice & Empowerment, Government of India has developed Guidelines for Assessment of Autism for the purposes of issuance of disability certificate in consultation with Union Ministry of Health and Family Welfare. 3. Definition: Autism Spectrum Disorder is a lifelong neurological condition typically appearing in the first three years of life that is marked by pervasive impairments in the areas of social skills and communication; often associated with hyper-or-hypo-reactivity to sensory input; unusual interest of stereotypical rituals, or behaviours; and may or may not be accompanied by intellectual impairment. 4. For identification of Autism cases the INCLEN tools shall be used. INCLEN Tools for identification of autism cases is at Annexure A.5. The Indian Scale of Assessment of Autism has been developed which provides the detailed assessment procedure and tools for assessing the extent of disability for persons with autism beyond 6 years of age. The Indian scale for assessment of autism is at Annexure B. Certification of disability for persons with autism may be carried out by a Autism Certification Medical Board, duly constituted by the Central Government or the State Government, comprising of members from the following fields: 1. Clinical Psychologist/Rehabilitation Psychologist 2. A Psychiatrist 3. A Paediatrician or General Physician as the case may be The State Govemments are, therefore, requested to constitute the Autism Certification Medical Board immediately. 6. Based on the identification of cases of Autism in terms of INCLEN tools, certification of Autism on the basis of ISAA tools shall be issued. The Proforma for issuance of Certificate of Disability of Persons with Autism shall be as per Annexure C. The certificate would be valid for a period of 5 years for those whose disability is ‘temporary and are below the age 18 years. For those who acquire permanent disability, the validity can be shown as “Permanent in the certificate. 7. The Director General of Health Services, Ministry of Health & Family Welfare shall be the final authority, should there arise any controversy/doubt regarding the interpretation of the definition/ctassification/evaluation test etc. Details of the Annexures appended to the guidelines are as under: List of Annexure Annexure A INCLEN diagnostic tools Annexure B Indian Scale of Assessment of Autism Annexure C Proforma for issuance of Certificate of Disbility of Persons with Autism Cem eeny (Awanish K. Awasthi) Joint Secretary File No. 16-21/2013-DD -IIlae. ASD_Tool UNIQUE ID . NEURODEVELOPMENTAL DISABILITIES AMONG CHILDREN IN INDIA: AN INCLEN STUDY INCLEN Diagnostic Tool for Autism Spectrum Disorder (INDT-ASD) State Date of Interview 2 a a ie e ‘ Distriet Tehsil Commencing | aw spu - aa Time Vilage Concluding Time | 7 a PERSONAL INFORMATION OF THE CHILD ‘Name of the Child: Date of Birth: pnw vYY Age: __years _montis Complete Address: Phone umber. = Date of Assessmenit: Name of the Assessor: =! eaeASD_Too! INSTRUCTIONS FOR EVALUATION + Primary caregiver must be present with the child + These behaviors are to be astessed in the context of children of same age 7 + Explain to parents that the answers should be based on the child's behavior most of the time area ee oe er «+ Follow the age directions given along with the question. For questions where no age cutoffs given, they should be asked for all children Le. all ages (2-9 years) #Askthe questions verbatim ‘Question can be repeated ifthe respondent can not understand Siill,if the respondent cannot understand, give example forthe particular behavior; No further elaboration is allowed © The questionnaire should be supplemented by observations for the suggestive behavior in the child throughout the assessment, ‘© Observe the behavior of child during the entre interview to confirm the presense oF absence of particular behavior (First ask, then observe if observation is discrepant, then re ask the question ‘and re-check the observation) + When there is discrepancy between parental response and your observation, * indicates whether parent report or observation should take precedence, and marked ‘accordingly + asterisk (*) 2 ies + When the parents response fs “unsure” your observation of the particular behavior will be given weightage even asterisk (*) is on parental response, In case you are tlso unable te observe the ‘behavior, and then ony mark the response as “Unsure” + Some criteria have multiple questions, While scoring, consider the criteria fulfilled even if response to any one of the questions is abnormal. For example, the criterion Ala is considered fulfitied ifany one of iii, o iy is abnormal in the chiléASD_Tool SECTION A Observe (Tick inithe boxit | Eneirclethe response isbrsed on | appropriate respoase observation) ‘Ala | 1) * Forchildren aged less than 4 years: | Inchildren telow4— j Yes | Docs your child usually enjoy being taken | years age: Response to | | in thetap orbuggeet V ackes obchea an iz : | cuddled by parent | enjoystolertes/squir h | ma stiffens! gets : | sped indent Ask in the box if response is based on answer) Forchildren aged 4years or more: When your child was a baby/todiler, id helshe enjoy being taken in the lap of hugged? ' i i ey ‘contact with you or other people? | Eg. While playing, asking for things, talking to you. iii) * Dots your child usually we various | Uscof hese gestures gestures appropriately during social in response 10 your interactions? sreeting end while Eg, Numaste, Salaam, waving bye-bye, | departing hello, iouching feet etc. (Atleest sometimes spontaneously) (usp appropriate excimple as required)ASD_Tool : ii ow [ FAppropranness oF } appropriate facial expressions according t0 | facial expressions the situation? 4} while intemeting with Eg being happy, sa, oft ete | parents, wih you (Granger, while _ playing, when given << | toyffavorite food or | wine scolded. Chi with other children = 1) * Does your child usually enjoy the compény of other children? ii) * For children aged 4 years or more: { Doss your child have tends of hisfber age | nschoo! end neighborhood) with whose heise loves to chat, stare fod or play interaction with ther i children of hi ‘No For children aged 4 years orm i af cid's Does your chilé play mostly with children {interaction wit ober | who are much older or much younger than | children imhe?? at Taste tinsire | orNA. T Unsure jorNa‘ASD_Tool Ale ald 1) For chitven aged less han dears: | Observe how the | Yo Does/id your child ever point with titer | child craws attention index finger to bring your ation to show j the things that interest heer? eat Eg kite, plane flying in the ky, eowog on | OF interest; Look for the rod et. coordinated pointing For chitdren aged 4 years or more: Does | ~ : your child usually bing things 10 Show you on his/her own hehe has ‘mae painted or new toy/gift? Unsire | and are able to spesk: | Does your child talk to you about things | helshe likes orhas achieved without being | asked about them? 1) * Does yourchild usually prefer co | Quality of play | play alone and getsinitated/moves away | in a group of ‘when hisher sibs orother kids ry to play | children or with with himiher? | siblings | t ii) * Does your child play games involving | turn taking or rule based with other [een caer | based games or games & 4, Hide and seek’t-spy, hi ir Ludo,Stapoo, Ring-a- ring reses etc. vat og rang Ae Unsere OrNA No UnsireASD_Too! Toes your appiness with you or eomve to you for smfort when hurt or upset? § Does your child usually share your fre upset /sad? ‘Share his*her | Sharing happiness or Ihappiness or try to comfort you when you § eisess wih he reas Siang ot parents * happiness or distress | by the citd ‘A2a{ * Does your ehild speak normally for isher age? (fthe child carmot speak normelly: Can helshe communicate with Eg pointing with inex finger, nodding? shaking heed for yes/no ete. Ifthe chitd cannot speak at all AND cennot commusloute by appropriate gestures, then only mark as NO". Ifthe child cannot speak BUT can | mark as “YES”. communicate by appropriate gestures, then : f age | appropriate language | (words and phrases) | Spontaneous use of gestures for } communication; *+Qualityimaturty of, pointing (Mature or + immature pototing and { + shand over hand” pointing) YesASD_Tool )* Does your child initiate aconversation + Quality of child's conversation with parents or yourself with you? Gasire™") or NA, F* For eiildren aged 4 years or mare: Can youhave conversion with your chi luring which he/she not only answers you uestions but also adds something new continue the conversation? | phrases regardless of meaning (in par or { whole) that he/she has heard? eg, enya il ley “aie yao Com hela ey omen yu (ath yor rome hte spe eer yar nane Tnsure fora alia * Delayed echo hings/T.Y serial dialogue regardless of ‘meaning/ context, whatever he/she has heard later on?ASD_Tool 1 i) For elven aged 7% H { Does your child usually wse“I forme” and | = ~ {me for you" incorrectly? ‘ Eg. when you ask “do you wont milk?” elshe says “yes, you want milk” or “Rohit wants milk" (referring to him self) ‘Gave Sonat speeh Wi) For chidren aged @ pear conversation does yourchild often } and neologsins speak‘outofcontex’ orielevanth? =| v)* For children aged 6 years or mor ‘Does yourchild understind that somebody | ®8*-#9PT is making fun of him/ter or can he/she * inderstands jokes? iol 2a Does yourchild participate in games ‘Quality of chik's play like *Pat-t-cake",“Peet-a-boo”,“Ring-a- | with toys or other Fing rose", “Akad bekkad bambe po”, objects Posam poa”, “Chal chameli baag mein” | Look for any form of and “Totas ud-maina ud” ete.? variable pretend play on Does your child play variable imaginative play with toys tke For girls--kitchen sev dolls/clay or dough For boys:- telephone! toy gunimotor ear? Yes UnsureASD_Tool on Has your child played different games like “gharghar", “teacherstudent” —(school- school), “chor-police” ete. with other kids inersdtvely 1)? Does your child have excessive interest + in odd things/ectivites which other children { do not have? | Ee. collecting toffee wrappers, polythene bags, piece of string or rope, pulling thread ind rubber band ete encompassing that i interferes his/ber activities? (Excluding T.V watching) 7 Any unusual | interests ie, unusual | forchild’s age eecsive onda ncorpassing interest in stiviies thet ae typical for ther child iver ie Ar Ric Unsure‘Boe: your eid fike fining or stacking | objectitoys excessively? (Excluding co) i aor 4 objects or toys ASD | Does your cil unreasonably insist on doing things in a particular way and/or become “upset if there is any change in the daily routine? Eg. Taking exerty the sine rie tthe | school or market, insisting on food being | seredn the same pater erseyuerce et + any unusuel routines { or rituals the followings, like flapping hands, hand wringing, toe-walking, rocking or spinning, making unusual finger or hand {Ty Doss your child Keep on repeating any of 1 Any type of motor sterecrypes, ‘unusual fingee/nand movements near faceASD_Too! : fascination with movement? Inappropriate Eg. splaning wheels, opening enclosing of 4 facination with door, electri: an. ruming waer and ary beets in motion other revolving object te. T Does your child prefr play witha * Qualiy ofchils | puticular partofatoy/object rather than + play with afferent | the whole toy/abject foysand obec | Eg wheels ofa toy rather than the whole toy i i | | ItASD_Tool SECTION B ‘Compete this section (1-8) based on responses from seetion A and further history tnbing (6-12) T. No. of eriteria fulfilled in Al of the section A (Social Interaction) 0: Less than two 1: Two or more Z No, of erlieria fulfilled in A2 of the section A (Communication) 0: Nil 4: One or more 3. No. of erteria fulfilled in A3 of the section A (Restricted Interests) 0: Nil 1: One or more 4. Interpretation of questionnaire (1 to 3) 0: No ASD (If response to 2 ormore of 1 t03 is “O") 1: ASD present (If response to | is “I” and. response to either or bot! of 2and 3 is“I”) 3, Total number of criteria fulfilled in Al, AZ and A3 together 0: Less than Six 1 %. Does /did your child have any of any of the following? 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