Autism Spectrum Disorder International Consortium

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hamper autism services for diagnosis and treatment. The. Autism Spectrum ... CARS : Childhood Autism Rating Scale - Asia: China,. Lebanon, Iran, India ...
A review of diagnostic measures for ASD in low- and middle-income regions Autism Spectrum Disorder International Consortium (ASDIC) Dejan Stevanovica, Maretha de Jongeb, Alejandra Auzac, Valentina Biasoned, Floriana Costanzod, Maia Gabuniae, Anita Marinif, Noordeen Shoqiratg, Giovanni Valerid, Stefano Vicarid on behalf of Autism Spectrum Disorder International Consortium (ASDIC) aClinic

for Neurology and Psychiatry for Children and Youth, Belgrade, Serbia; bFaculty of Social Science, Education and Child Studies, Clinical neuroscience and developmental disorders, University Leiden, The Netherlands; cLanguage and Cognition Laboratory, Hospital General Dr. Manuel Gea González, Mexico; dChild Neuropsychiatry Unit, Bambino Gesù Children’s Hospital, Rome, Italy; eMental Health Center, Tbilisi, Georgia; fWHO Jordan consultant; gFaculty of Nursing, Mutah University Jordan

Objectives International data showed that in countries with various income levels there are regions where limited resources hamper autism services for diagnosis and treatment. The Autism Spectrum Disorder International Consortium (ASDIC) brings together academic partners from different parts of the world and aims for improving care and research in underserved regions. The current study aimed to review diagnostic measures for ASD used in research from low- and middle-income counties (LMIC).

Methods A systematic search was performed using a PubMed database. The aim was to locate diagnostic measures employed or developed in LMIC for evaluating or diagnosing children with ASD. Screening measures are not included. No age, language, or other filters were placed and review articles were included.

Results A total of 34 studies from different countries were included. It was found that seven diagnostic measures were developed in LMIC. Nine diagnostic measures - developed in the USA or Europe – were found to be used in LMIC, but mostly without cultural validation. In 8 countries, between 10-70 studies were found describing the use of diagnostic measures (mostly ADI-R, ADOS, CARS), while in the majority less than 10 studies were detected. A minority of the measures is freely available. Most measures are expensive due to materials, training or lengthy administration by high skilled professionals.

Conclusions The results highlight the urgent need for affordable diagnostic measures of which the psychometric properties are investigated in low resource regions and from a diverse cultural perspective. The ASDIC Consortium, led by a multidisciplinary team, is committed to help on contributing to this goal.

Diagnostic measures developed in the USA or Europe – and used in LMIC studies • ABC : Autism Behavior Checklist - Asia: China, Iran, India, •

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Turkey; Africa: Zimbabwe; South/Middle America: Brazil CARS : Childhood Autism Rating Scale - Asia: China, Lebanon, Iran, India, Pakistan, Sri Lanka, Turkey, Vietnam; Africa: Egypt, Nigeria, South Africa; Tanzania, South/Middle America: Brazil, Cuba, Columbia, Mexico ATEC : Autism Treatment Evaluation Checklist – Egypt, India, China, Cuba, Iran ADI-R : Autism Diagnostic Interview - Revised - Europe: Bulgaria, Serbia; Asia: China, Bangladesh, India, Iran; Africa: Congo, Egypt, Tanzania, Tunisia; South/Middle America: Argentina, Brazil, Costa Rica, Cuba, Jamaica, Mexico, Venezuela ADOS : Autism Diagnostic Observation Schedule - Europe: Albania, Romania; Asia: China, Bangladesh, India, Iran, Nepal; Africa: Congo, 10 African languages South Africans; South/Middle America: Costa Rica, Jamaica, Mexico, Venezuela GARS-2 : Gilliam Autism Rating Scale - Second Edition – Iran, Egypt, Azerbaijan ESCS : Early Social Communication Scales – Iran Pervasive Developmental Disorder Behavior Inventory – Indonesia

• PDD-MRS : Scale of Pervasive Disorder in Mentally Retarded Persons – Congo

Measures developed in LMIC countries/language • ADI-TSS Autism Diagnostic Inventory-Telephone Screening in Spanish based on the ADI-R – Argentina • BSE-R : Arabic of the Revised Autistic Behavior Summarized Evaluation Scale – Lebanon • Structured interview for children with autism spectrum disorder based on the DSM-IV – Thailand • Autistic Diagnostic Check List – Bangladesh • INDT-ASD : INCLEN diagnostic tool for ASD and Indian Scale for Assessment of Autism (ISAA) – India • Symptom Checklist based on the DSM – Nigeria • Autism Spectrum Inventory (Inventario del Espectro Autista, IDEA) – Spanish

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Autism Spectrum Disorder International Consortium (ASDIC)

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Dejan Stevanovic : [email protected] Maretha de Jonge : [email protected]