Skip to main content

European clinical network: autism spectrum disorder assessments and patient characterisation

Abstract

The United Nations and World Health Organisation have identified autism spectrum disorder (ASD) as an important public health issue across global mental health services. Although a range of tools exist to identify and quantify ASD symptoms, there is a lack of information about which ASD measures are used in different services worldwide. This paper presents data from a large survey of measures used for patient characterisation in major ASD research and clinical centres across Europe collected between June 2013 and January 2014. The objective was to map the use of different instruments used to characterise ASD, comorbid psychopathology and cognitive and adaptive ability for patient diagnostic and characterisation purposes across Europe. Sixty-six clinical research sites diagnosing 14,844 patients per year contributed data. The majority of sites use the well-established Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview (ADI) instruments, though the proportion of sites in Western Europe using the ADI was almost double the rate in Eastern Europe. Approximately half the sites also used the Social Communication Questionnaire (SCQ) and Social Responsiveness Scale (SRS), although use of the SRS was over three times higher in Western Europe compared with Eastern Europe. The use of free/open access measures was lower than commercially available tools across all regions. There are clinical and scientific benefits in encouraging further convergence of clinical characterisation measures across ASD research and clinical centres in Europe to facilitate large-scale data sharing and collaboration, including clinical trials of novel medications and psychological interventions.

This is a preview of subscription content, access via your institution.

Fig. 1
Fig. 2
Fig. 3

Notes

  1. 1.

    Analysis was restricted to the six most common ASD questionnaire measures: SCQ, SRS, AQ, ABC, CHAT/M-CHAT, CARS.

References

  1. 1.

    Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the special needs and autism project (SNAP). Lancet 368(9531):210–215. doi:10.1016/S0140-6736(06)69041-7

    PubMed  Article  Google Scholar 

  2. 2.

    Baron-Cohen S, Scott FJ, Allison C, Williams J, Bolton P, Matthews FE, Brayne C (2009) Prevalence of autism-spectrum conditions: UK school-based population study. Br J Psychiatry 194(6):500–509. doi:10.1192/bjp.bp.108.059345

    PubMed  Article  Google Scholar 

  3. 3.

    Elsabbagh M, Divan G, Koh YJ, Kim YS, Kauchali S, Marcin C, Montiel-Nava C, Patel V, Paula CS, Wang C, Yasamy MT, Fombonne E (2012) Global prevalence of autism and other pervasive developmental disorders. Autism Res 5(3):160–179. doi:10.1002/aur.239

    PubMed Central  PubMed  Article  Google Scholar 

  4. 4.

    Buescher AV, Cidav Z, Knapp M, Mandell DS (2014) Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr. doi:10.1001/jamapediatrics.2014.210

    PubMed  Google Scholar 

  5. 5.

    Howlin P, Moss P, Savage S, Rutter M (2013) Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children. J Am Acad Child Adolesc Psychiatry 52(6):572–581. doi:10.1016/j.jaac.2013.02.017

    PubMed  Article  Google Scholar 

  6. 6.

    Autism spectrum disorders and other developmental disorders: From raising awareness to building capacity (2013) World Health Organisation. Switzerland, Geneva

    Google Scholar 

  7. 7.

    World Health Organisation Executive Board Resolution 133/4. Comprehensive and Coordinated Efforts for the Management of Autism Spectrum Disorders (2013) World Health Oragnisation, Geneva

  8. 8.

    United Nations General Assembly Resolution, 62/139 9A/RES/62/139. World Autism Awareness Day (2007). United Nations General Assembly, NY

  9. 9.

    Ecker C, Spooren W, Murphy D (2013) Developing new pharmacotherapies for autism. J Intern Med 274(4):308–320. doi:10.1111/joim.12113

    CAS  PubMed  Article  Google Scholar 

  10. 10.

    American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders. American Psychiatric Publishing, Arlington

    Book  Google Scholar 

  11. 11.

    World Health Organisation (1992) The ICD-10 classification of mental and behavioural disorders: clinical descriptions and diagnostic guidelines. World Health Organisation, Geneva

    Google Scholar 

  12. 12.

    Lord C, Rutter M, Le Couteur A (1994) Autism Diagnostic Interview-Revised: a revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. J Autism Dev Disord 24(5):659–685

    CAS  PubMed  Article  Google Scholar 

  13. 13.

    Lord C, Rutter M, DiLavore P, Risi S (2001) Autism Diagnostic Observation Schedule. Western Psychological Services, Los Angeles

    Google Scholar 

  14. 14.

    Lord C, Rutter M, DiLavore P, Risi S, Gotham K, Bishop S (2012) Autism Diagnostic Observation Schedule, (ADOS-2), 2nd edn. Western Psychological Services, Torrance

    Google Scholar 

  15. 15.

    Rutter M, Bailey A, Lord C (2003) The Social Communication Questionnaire. Western Psychological Services, Los Angeles

    Google Scholar 

  16. 16.

    Lord C, Risi S, Lambrecht L, Cook EH Jr, Leventhal BL, DiLavore PC, Pickles A, Rutter M (2000) The autism diagnostic observation schedule-generic: a standard measure of social and communication deficits associated with the spectrum of autism. J Autism Dev Disord 30(3):205–223

    CAS  PubMed  Article  Google Scholar 

  17. 17.

    Constantino JN (2005) The Social Responsiveness Scale. Western Psychological Services, Los Angeles

    Google Scholar 

  18. 18.

    Rutter M, Bailey A, Lord C (2003) The Social Communication Questionnaire. Western Psychological Services, Los Angeles

    Google Scholar 

  19. 19.

    Charman T, Gotham K (2013) Measurement issues: screening and diagnostic instruments for autism spectrum disorders—lessons from research and practice. Child Adolesc Ment Health 18(1):52–63. doi:10.1111/j.1475-3588.2012.00664.x

    PubMed Central  PubMed  Article  Google Scholar 

  20. 20.

    Baron-Cohen S, Wheelwright S, Skinner R, Martin J, Clubley E (2001) The autism-spectrum quotient (AQ): evidence from asperger syndrome/high-functioning autism, males and females, scientists and mathematicians. J Autism Dev Disord 31(1):5–17

    CAS  PubMed  Article  Google Scholar 

  21. 21.

    Skuse D, Warrington R, Bishop D, Chowdhury U, Lau J, Mandy W, Place M (2004) The developmental, dimensional and diagnostic interview (3di): a novel computerized assessment for autism spectrum disorders. J Am Acad Child Adolesc Psychiatry 43(5):548–558. doi:10.1097/00004583-200405000-00008

    PubMed  Article  Google Scholar 

  22. 22.

    Wallace S, Fein D, Rosanoff M, Dawson G, Hossain S, Brennan L, Como A, Shih A (2012) A global public health strategy for autism spectrum disorders. Autism Res 5(3):211–217. doi:10.1002/aur.1236

    PubMed  Article  Google Scholar 

  23. 23.

    Fombonne E, Marcin C, Bruno R, Tinoco CM, Marquez CD (2012) Screening for autism in Mexico. Autism Res 5(3):180–189. doi:10.1002/aur.1235

    PubMed  Article  Google Scholar 

  24. 24.

    Norbury CF, Sparks A (2013) Difference or disorder? cultural issues in understanding neuro developmental disorders. Dev Psychol 49(1):45–58. doi:10.1037/a0027446

    PubMed  Article  Google Scholar 

  25. 25.

    Freeth M, Sheppard E, Ramachandran R, Milne E (2013) A cross-cultural comparison of autistic traits in the UK, India and Malaysia. J Autism Dev Disord 43(11):2569–2583. doi:10.1007/s10803-013-1808-9

    PubMed  Article  Google Scholar 

  26. 26.

    Bernier R, Mao A, Yen J (2010) Psychopathology, families, and culture: autism. Child Adolesc Psychiatr Clin N Am 19(4):855–867. doi:10.1016/j.chc.2010.07.005

    PubMed  Article  Google Scholar 

  27. 27.

    Shaw E, Hatton D (2009) Screening and early identification of autism spectrum disorders. Queries: an occasional paper compiling states’ approaches to current topics). FPG Child Development Institute, National Early Childhood Technical Assistance Center, Chapel Hill; The University of North Carolina

  28. 28.

    Palmer E, Ketteridge C, Parr JR, Baird G, Le Couteur A (2011) Autism spectrum disorder diagnostic assessments: improvements since publication of the national autism plan for children. Arch Dis Child 96(5):473–475. doi:10.1136/adc.2009.172825

    CAS  PubMed  Article  Google Scholar 

  29. 29.

    Bolte S, Marschik PB, Falck-Ytter T, Charman T, Roeyers H, Elsabbagh M (2013) Infants at risk for autism: a European perspective on current status, challenges and opportunities. Eur Child Adolesc Psychiatry 22(6):341–348. doi:10.1007/s00787-012-0368-4

    PubMed Central  PubMed  Article  Google Scholar 

  30. 30.

    Murphy D, Spooren W (2012) EU-AIMS: a boost to autism research. Nat Rev Drug Discov 11(11):815–816. doi:10.1038/nrd3881

    CAS  PubMed  Article  Google Scholar 

  31. 31.

    Baron-Cohen S, Wheelwright S, Cox A, Baird G, Charman T, Swettenham J, Drew A, Doehring P (2000) Early identification of autism by the checklist for autism in toddlers (CHAT). J R Soc Med 93(10):521–525

    CAS  PubMed Central  PubMed  Google Scholar 

  32. 32.

    Robins DL, Fein D, Barton ML, Green JA (2001) The Modified Checklist for Autism in Toddlers: an initial study investigating the early detection of autism and pervasive developmental disorders. J Autism Dev Disord 31(2):131–144

    CAS  PubMed  Article  Google Scholar 

  33. 33.

    Wing L, Leekam SR, Libby SJ, Gould J, Larcombe M (2002) The Diagnostic Interview for Social and Communication Disorders: background, inter-rater reliability and clinical use. J Child Psychol Psychiatry 43(3):307–325

    PubMed  Article  Google Scholar 

  34. 34.

    Schopler EC, Reichler R, Renner B (1988) The Childhood Autism Rating Scale (CARS). Western Psychological Services, Los Angeles

    Google Scholar 

  35. 35.

    Krug DA, Arick J, Almond P (1993) Autism screening instrument for educational planning. Pro-Ed, Austin

    Google Scholar 

  36. 36.

    First MB, Spitzer RL, Williams JBW (2002) Structured Clinical Interview for DSM-IV-TR Axis I Disorders, Research Version, Patient Edition. (SCID-I/P) Biometrics Research, New York State Psychiatric Institute, NY

  37. 37.

    First MB, Gibbon M, Spitzer RL, Williams JBW, Benjamin LS (1997) Structured Clinical Interview for DSM-IV Axis II personality disorders, (SCID-II). American Psychiatric Press Inc, Washington

    Google Scholar 

  38. 38.

    Goodman R, Ford T, Richards H, Gatward R, Meltzer H (2000) The Development and Well-Being Assessment: description and initial validation of an integrated assessment of child and adolescent psychopathology. J Child Psychol Psychiatry 41(5):645–655

    CAS  PubMed  Article  Google Scholar 

  39. 39.

    Sheehan DV, Lecrubier Y, Sheehan KH, Amorim P, Janavs J, Weiller E, Hergueta T, Baker R, Dunbar GC (1998) The Mini-International Neuropsychiatric Interview (MINI): the development and validation of a structured diagnostic psychiatric interview for DSM-IV and ICD-10. J Clin Psychiatry 59(Suppl 20):22–33 quiz 34–57

    PubMed  Google Scholar 

  40. 40.

    Achenbach TM, Edelbrock C (1983) Manual for the child behavior checklist and revised child behavior profile. Queen City Printers, Burlington

    Google Scholar 

  41. 41.

    Goodman R (1997) The Strengths and Difficulties Questionnaire: a research note. J Child Psychol Psychiatry 38(5):581–586

    CAS  PubMed  Article  Google Scholar 

  42. 42.

    Wechsler D (2003) The Wechsler Intelligence Scale for Children, 4th edn. The Psychological Corporation, San Antonio

    Google Scholar 

  43. 43.

    Wechsler D (2008) Wechsler Adult Intelligence Scale, 4th edn. Pearson, San Antonio

    Google Scholar 

  44. 44.

    Wechsler D (2012) Wechsler Preschool and Primary Scale of Intelligence, 4th edn. The Psychological Corporation San Antonio, TX

    Google Scholar 

  45. 45.

    Dunn L, Dunn L, Williams K, Wang J (1997) Peabody Picture Vocabulary Test III. American Guidance Service Inc, Circle Pines

    Google Scholar 

  46. 46.

    Semel E, Wiig EH, Secord WA (2003) Clinical Evaluation of Language Fundamentals, 4th edn. The Psychological Corporation/A Harcourt Assessment Company, Toronto

    Google Scholar 

  47. 47.

    Wiig EH, Secord WA (2004) Clinical Evaluation of Language Fundamentals, Preschool, 2nd edn. The Psychological Corporation/A Harcourt Assessment Company, San Antonio

    Google Scholar 

  48. 48.

    Sparrow S, Cicchetti DV, Balla DA (2005) Vineland Adaptive Behavior Scales (Vineland II) survey interview form/caregiver rating form, 2nd edn. Pearson Assessments, Livonia

    Google Scholar 

  49. 49.

    Harrison PL, Oakland T (2000) Adaptive Behavior Assessment. Psychological Corporation San Antonio, TX

    Google Scholar 

  50. 50.

    Luteijn E, Jackson S, Volkmar FR, Minderaa RB (1998) Brief report: the development of the children’s social behavior questionnaire: preliminary data. J Autism Dev Disord 28(6):559–565

    CAS  PubMed  Article  Google Scholar 

  51. 51.

    Luteijn E, Luteijn F, Jackson S, Volkmar F, Minderaa R (2000) The children’s social behavior questionnaire for milder variants of PDD problems: evaluation of the psychometric characteristics. J Autism Dev Disord 30(4):317–330

    CAS  PubMed  Article  Google Scholar 

  52. 52.

    Lord CE (2010) Autism: from research to practice. Am Psychol 65(8):815–826. doi:10.1037/0003-066X.65.8.815

    PubMed Central  PubMed  Article  Google Scholar 

  53. 53.

    Santosh PJ, Mandy WP, Puura K, Kaartinen M, Warrington R, Skuse DH (2009) The construction and validation of a short form of the developmental, diagnostic and dimensional interview. Eur Child Adolesc Psychiatry 18(8):521–524. doi:10.1007/s00787-009-0004-0

    PubMed  Article  Google Scholar 

  54. 54.

    Elsabbagh M (2012) Perspectives from the common ground. Autism Res 5(3):153–155. doi:10.1002/aur.1237

    PubMed  Article  Google Scholar 

  55. 55.

    DeWeerdt S (2013) Researchers call for open access to autism diagnostic tools. Simons Foundation Autism Research Initiative (SFARI) Original Online Article (http://sfari.org/news-and-opinion/news/2013/researchers-call-for-open-access-to-autism-diagnostic-tools.):Accessed 27 June 2013

  56. 56.

    Khan NZ, Muslima H, Begum D, Shilpi AB, Akhter S, Bilkis K, Begum N, Parveen M, Ferdous S, Morshed R, Batra M, Darmstadt GL (2010) Validation of rapid neurodevelopmental assessment instrument for under-two-year-old children in Bangladesh. Pediatrics 125(4):e755–e762. doi:10.1542/peds.2008-3471

    PubMed  Article  Google Scholar 

  57. 57.

    Zaroff CM, Uhm SY (2012) Prevalence of autism spectrum disorders and influence of country of measurement and ethnicity. Soc Psychiatry Psychiatr Epidemiol 47(3):395–398. doi:10.1007/s00127-011-0350-3

    PubMed  Article  Google Scholar 

  58. 58.

    Published Commercial Translations (2014). http://www.wps.publish.com/app/OtherSerivce/PublishedTranslations.aspx. Accessed 10 August 2014

  59. 59.

    Chuthapisith J, Taycharpipranai P, Ruangdaraganon N, Warrington R, Skuse D (2012) Translation and validation of the developmental, dimensional and diagnostic interview (3Di) for diagnosis of autism spectrum disorder in Thai children. Autism 16(4):350–356. doi:10.1177/1362361311433770

    PubMed  Article  Google Scholar 

  60. 60.

    Mandy W, Charman T, Puura K, Skuse D (2014) Investigating the cross-cultural validity of DSM-5 autism spectrum disorder: evidence from Finnish and UK samples. Autism 18(1):45–54. doi:10.1177/1362361313508026

    PubMed  Article  Google Scholar 

  61. 61.

    Grinker RR, Yeargin-Allsopp M, Boyle CA (2011) Culture and autism spectrum disorders: The impact of prevalence and recognition. In: Amaral D, Dawson G, Geschwind DH (eds) autism spectrum disorders. Oxford University Press, NY, pp 112–136

    Chapter  Google Scholar 

Download references

Acknowledgments

Members of the EU-AIMS clinical network who contributed information are: Ariel Como, Entela Vakiari (Albania); Sergey Bukin, Andrei Kirpichenko (Belarus); Jan Croonenberghs, Herbert Roeyers (Belgium); Smail Zubcevic (Bosnia & Herzegovina); Petar Petrov, Nadia Polnareva (Bulgaria); Jasmina Ivsac Pavlisa (Croatia); Iva Dudova, Michal Hrdlicka, Hana Oslejskova (Czech Republic); Niels Bilenberg, Marlene Briciet Lauritsen (Denmark); Hanna Ebeling, Eija Kärnä, Tani Pekka, Andre Sourander (Finland); Eva-Evangelina Bonda, David Cohen, Bernadette Roge (France); Tobias Banaschewski, Katja Becker, Matthais Dose, Christine Freitag, Franziska Gaese, Inge Kamp-Becker, Volker Mall, Michele Noterdaeme, Luise Poustka, Ulrike Schulze, Judith Sinzig, Martin Sobanski (Germany); Konstantinos Francis (Greece); Anna Balázs (Hungary); Evald Saemundsen (Iceland); Louise Gallagher (Ireland); Luigi Mazzone, Filippo Muratori, Antonio Persico, Alessandro Zuddas (Italy); Martine Weber (Luxembourg); Tatjana Zorcec (Macedonia); John Farrugia (Malta); Jan Buitelaar, Sarah Durston, Pieter Hoekstra, Emma van Daalen (Netherlands); Rafal Kawa (Poland); Magdalena Budisteanu (Romania); Svytoslav Dovbyna, Tatiana Morozova (Russia); Milica Pejovic Milovancevic (Serbia); Igor Škodácek (Slovakia); Marta Macedoni-Luksic (Slovenia); Rosa Calvo, Ricardo Canal Bedia, Manuel Franco, Joaquin Fuentes, Mara Parellada Manuel Posada, Soraya Geijo Uribe (Spain); Sven Bölte (Sweden); Ronnie Gundelfinger, Susanna Walitza (Switzerland); Michael Absoud, Jonathan Green; Kathy Leadbitter, Sue Leekam, Ann le Couteur, Helen McConachie, Grainne McAlonan, Declan Murphy, Jeremy Parr, Vicky Slonims (UK); Igor Martsenkovsky (Ukraine). Thanks also to Andy Shih and Amy Daniels from Autism Speaks for their help. This work was supported by EU-AIMS (http://www.eu-aims.eu/) who is funded by the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115300, composed of financial contribution from the European Union’s Seventh Framework Program (FP7/2007-2013), from the EFPIA companies in kind contribution and from Autism Speaks (http://www.autismspeaks.org/). TC was supported by COST Action BM1004 funded by the European Science Foundation.

Conflict of interest

Jan K Buitelaar has been in the past 3 years a consultant to/member of advisory board of/and/or speaker for Janssen Cilag BV, Eli Lilly, and Servier. He is not an employee of any of these companies, and not a stock shareholder of any of these companies. He has no other financial or material support, including expert testimony, patents and royalties. Will Spooren is an employee of F. Hoffman-La Roche.

Author information

Affiliations

Authors

Corresponding author

Correspondence to Karen L. Ashwood.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Ashwood, K.L., Buitelaar, J., Murphy, D. et al. European clinical network: autism spectrum disorder assessments and patient characterisation. Eur Child Adolesc Psychiatry 24, 985–995 (2015). https://doi.org/10.1007/s00787-014-0648-2

Download citation

Keywords

  • Autism
  • Europe
  • Diagnosis
  • Screening
  • Measures