Skip to main content
NCBI home page
Medline Book to support NIHPA logoLink to Medline Book to support NIHPA
. 2020 Jul;24(35):1–306. doi: 10.3310/hta24350

Interventions based on early intensive applied behaviour analysis for autistic children: a systematic review and cost-effectiveness analysis.

Mark Rodgers, David Marshall, Mark Simmonds, Ann Le Couteur, Mousumi Biswas, Kath Wright, Dheeraj Rai, Stephen Palmer, Lesley Stewart, Robert Hodgson
PMCID: PMC7397479  PMID: 32686642

Abstract

BACKGROUND

Early intensive applied behaviour analysis-based interventions are intensive interventions for autistic children that are often delivered on a one-to-one basis for 20-50 hours per week.

OBJECTIVES

To evaluate the clinical effectiveness and cost-effectiveness of early intensive applied behaviour analysis-based interventions for autistic children, based on current evidence.

METHODS

A systematic review and individual participant data meta-analysis were conducted to evaluate the clinical effectiveness of an early intensive applied behaviour analysis-based intervention for autistic children. An economic analysis included a review of existing analyses and the development of a new model.

RESULTS

Twenty studies were included in the clinical review. Individual participant data were retrieved from 15 of these studies. Results favoured the interventions when assessing adaptive behaviour after 2 years compared with treatment as usual/eclectic interventions (mean difference 7.00, 95% confidence interval 1.95 to 12.06). In analyses of cognitive ability (intelligence quotient), results favoured the interventions by approximately 10 points after 1 year (mean difference 9.16, 95% confidence interval 4.38 to 13.93) and 2 years (mean difference 14.13, 95% confidence interval 9.16 to 19.10). Evidence for other outcomes was limited and meta-analyses were generally inconclusive. There was no evidence that the effect of the interventions varied with characteristics of the children, but data were limited. Adopting a £30,000 per quality-adjusted life-year threshold, the results of the cost-effectiveness analysis indicate that early intensive applied behaviour analysis-based interventions would need to generate larger benefits or cost savings to be cost-effective. Adopting a public sector perspective and making pessimistic assumptions about long-term effects, the incremental cost-effectiveness ratio for early intensive applied behaviour analysis-based therapy compared with treatment as usual is £189,122 per quality-adjusted life-year. When optimistic assumptions are made, the incremental cost-effectiveness ratio is £46,768 per quality-adjusted life-year. Scenario analyses indicated that these interventions can potentially be cost-effective if long-term improvements persist into adulthood, or if they have significant impact on educational placement. Care should be taken when interpreting these scenarios owing to the limited data.

LIMITATIONS

All included studies were at risk of bias, there was substantial heterogeneity and effects varied considerably across studies. The effect of intervention on autism symptom severity, language development and school placement remains uncertain because of the limited data. The long-term effects are unclear owing to a lack of follow-up data.

CONCLUSIONS

This review found limited evidence that early intensive applied behaviour analysis-based interventions may improve cognitive ability and adaptive behaviour, but the long-term impact of the interventions remains unknown. The economic analysis is constrained by the limited effectiveness evidence, but suggests that these interventions are unlikely to be cost-effective unless clear long-term benefits, or a substantial change in which schools children attend, can be identified.

FUTURE WORK

Further studies into the effectiveness of early intensive applied behaviour analysis-based interventions may be warranted if they include well-defined, alternative interventions as comparators and collect relevant outcomes. Consideration should be given to future studies that not only address whether or not early intensive applied behaviour analysis-based interventions are clinically effective, but also aim to identify which components of early intensive applied behaviour analysis-based interventions might drive effectiveness.

STUDY REGISTRATION

This study is registered as PROSPERO CRD42017068303.

FUNDING

This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 35. See the NIHR Journals Library website for further project information.

Plain language summary

Autism is a lifelong condition that affects how people understand the world and interact with others. Early intensive applied behaviour analysis-based interventions are an approach designed to help young (preschool) autistic children. This approach is often delivered on a one-to-one basis, for 20–50 hours per week, over a period of several years. This project obtained and analysed the original data from studies of early intensive applied behaviour analysis-based interventions, to determine whether or not these interventions are beneficial. It also investigated whether or not the interventions represent good value for money. The results suggest that early intensive applied behaviour analysis-based interventions may improve children’s intelligence, communication, social and life skills more than standard approaches. However, some results could be inaccurate or incorrect, and there was no evidence about other important outcomes, such as the severity of autism and where children went to school. Most studies lasted for around 2 years, which means that it is not known if early intensive applied behaviour analysis-based interventions have meaningful long-term benefits. It was not possible to fully assess whether or not these interventions provided value for money, as the benefits of early intensive applied behaviour analysis-based interventions were unclear, although the available evidence suggested that they did not. Early intensive applied behaviour analysis-based interventions may, however, provide value for money if their effects were to last into adulthood, or if receiving early intensive applied behaviour analysis had a large impact on the type of school children attended. Future studies of early interventions may be helpful, but should consider looking at which components of early applied behaviour analysis-based interventions are the most important, rather than at whether or not they work better than other interventions. Future studies should also follow best current research practice and evaluate outcomes that matter to autistic people and their families.

Full text of this article can be found in Bookshelf.

References

  1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Washington, DC: American Psychiatric Association; 2013. https://doi.org/10.1176/appi.books.9780890425596 doi: 10.1176/appi.books.9780890425596. [DOI]
  2. Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T. Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet 2006;368:210–15. https://doi.org/10.1016/S0140-6736(06)69041-7 doi: 10.1016/S0140-6736(06)69041-7. [DOI] [PubMed]
  3. Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, et al. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry 2011;68:459–65. https://doi.org/10.1001/archgenpsychiatry.2011.38 doi: 10.1001/archgenpsychiatry.2011.38. [DOI] [PubMed]
  4. Makrygianni MK, Reed P. A meta-analytic review of the effectiveness of behavioural early intervention programs for children with autistic spectrum disorders. Res Autism Spect Dis 2010;4:577–93. https://doi.org/10.1016/j.rasd.2010.01.014 doi: 10.1016/j.rasd.2010.01.014. [DOI]
  5. Zwaigenbaum L, Duku E, Fombonne E, Szatmari P, Smith IM, Bryson SE, et al. Developmental functioning and symptom severity influence age of diagnosis in Canadian preschool children with autism. Paediatr Child Health 2019;24:e57–e65. https://doi.org/10.1093/pch/pxy076 doi: 10.1093/pch/pxy076. [DOI] [PMC free article] [PubMed]
  6. Emerson ND, Morrell HER, Neece C. Predictors of age of diagnosis for children with autism spectrum disorder: the role of a consistent source of medical care, race, and condition severity. J Autism Dev Disord 2016;46:127–38. https://doi.org/10.1007/s10803-015-2555-x doi: 10.1007/s10803-015-2555-x. [DOI] [PubMed]
  7. Shattuck PT, Durkin M, Maenner M, Newschaffer C, Mandell DS, Wiggins L, et al. Timing of identification among children with an autism spectrum disorder: findings from a population-based surveillance study. J Am Acad Child Adolesc Psychiatry 2009;48:474–83. https://doi.org/10.1097/CHI.0b013e31819b3848 doi: 10.1097/CHI.0b013e31819b3848. [DOI] [PMC free article] [PubMed]
  8. Jónsdóttir SL, Saemundsen E, Antonsdóttir IS, Sigurdardóttir S, Ólason D. Children diagnosed with autism spectrum disorder before or after the age of 6 years. Res Autism Spect Dis 2011;5:175–84. https://doi.org/10.1016/j.rasd.2010.03.007 doi: 10.1016/j.rasd.2010.03.007. [DOI]
  9. Szatmari P, Georgiades S, Duku E, Bennett TA, Bryson S, Fombonne E, et al. Developmental trajectories of symptom severity and adaptive functioning in an inception cohort of pre school children with autism spectrum disorder. JAMA Psychiatry 2015;72:276–83. https://doi.org/10.1001/jamapsychiatry.2014.2463 doi: 10.1001/jamapsychiatry.2014.2463. [DOI] [PubMed]
  10. Hudry K, McConachie H, Le Couteur A, Howlin P, Barrett B, Slonims V. Predictors of reliable symptom change: secondary analysis of the Preschool Autism Communication Trial. Autism Dev Lang Impair 2018;3:1–12. https://doi.org/10.1177/2396941518764760 doi: 10.1177/2396941518764760. [DOI]
  11. Solomon M, Iosif AM, Reinhardt VP, Libero LE, Nordahl CW, Ozonoff S, et al. What will my child’s future hold? Phenotypes of intellectual development in 2–8-year-olds with autism spectrum disorder. Autism Res 2018;11:121–32. https://doi.org/10.1002/aur.1884 doi: 10.1002/aur.1884. [DOI] [PMC free article] [PubMed]
  12. Noens I, van Berckelaer-Onnes I, Verpoorten R, van Duijn G. The ComFor: an instrument for the indication of augmentative communication in people with autism and intellectual disability. J Intellect Disabil Res 2006;50:621–32. https://doi.org/10.1111/j.1365-2788.2006.00807.x doi: 10.1111/j.1365-2788.2006.00807.x. [DOI] [PubMed]
  13. Rowley E, Chandler S, Baird G, Simonoff E, Pickles A, Loucas T, et al. The experience of friendship, victimization and bullying in children with an autism spectrum disorder: associations with child characteristics and school placement. Res Autism Spect Dis 2012;6:1126–34. https://doi.org/10.1016/j.rasd.2012.03.004 doi: 10.1016/j.rasd.2012.03.004. [DOI]
  14. Bauminger N, Kasari C. Loneliness and friendship in high-functioning children with autism. Child Dev 2000;71:447–56. https://doi.org/10.1111/1467-8624.00156 doi: 10.1111/1467-8624.00156. [DOI] [PubMed]
  15. Howlin P, Goode S, Hutton J, Rutter M. Adult outcome for children with autism. J Child Psychol Psychiatry 2004;45:212–29. https://doi.org/10.1111/j.1469-7610.2004.00215.x doi: 10.1111/j.1469-7610.2004.00215.x. [DOI] [PubMed]
  16. Howlin P, Moss P. Adults with autism spectrum disorders. Can J Psychiatry 2012;57:275–83. https://doi.org/10.1177/070674371205700502 doi: 10.1177/070674371205700502. [DOI] [PubMed]
  17. Magiati I, Tay XW, Howlin P. Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: a systematic review of longitudinal follow-up studies in adulthood. Clin Psychol Rev 2014;34:73–86. https://doi.org/10.1016/j.cpr.2013.11.002 doi: 10.1016/j.cpr.2013.11.002. [DOI] [PubMed]
  18. Croen LA, Zerbo O, Qian Y, Massolo ML, Rich S, Sidney S, Kripke C. The health status of adults on the autism spectrum. Autism 2015;19:814–23. https://doi.org/10.1177/1362361315577517 doi: 10.1177/1362361315577517. [DOI] [PubMed]
  19. Rai D, Heuvelman H, Dalman C, Culpin I, Lundberg M, Carpenter P, Magnusson C. Association between autism spectrum disorders with or without intellectual disability and depression in young adulthood. JAMA Netw Open 2018;1:e181465. https://doi.org/10.1001/jamanetworkopen.2018.1465 doi: 10.1001/jamanetworkopen.2018.1465. [DOI] [PMC free article] [PubMed]
  20. Selten JP, Lundberg M, Rai D, Magnusson C. Risks for nonaffective psychotic disorder and bipolar disorder in young people with autism spectrum disorder: a population-based study. JAMA Psychiatry 2015;72:483–9. https://doi.org/10.1001/jamapsychiatry.2014.3059 doi: 10.1001/jamapsychiatry.2014.3059. [DOI] [PubMed]
  21. Lyall K, Croen L, Daniels J, Fallin MD, Ladd-Acosta C, Lee BK, et al. The changing epidemiology of autism spectrum disorders. Annu Rev Public Health 2017;38:81–102. https://doi.org/10.1146/annurev-publhealth-031816-044318 doi: 10.1146/annurev-publhealth-031816-044318. [DOI] [PMC free article] [PubMed]
  22. NHS Digital. Autism Spectrum Disorders in Adults Living in Households Throughout England – Report From the Adult Psychiatric Morbidity Survey. Leeds: NHS Information Centre; 2007.
  23. Buescher AV, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr 2014;168:721–8. https://doi.org/10.1001/jamapediatrics.2014.210 doi: 10.1001/jamapediatrics.2014.210. [DOI] [PubMed]
  24. Howlin P, Magiati I, Charman T. Systematic review of early intensive behavioral interventions for children with autism. Am J Intellect Dev Disabil 2009;114:23–41. https://doi.org/10.1352/2009.114:23;nd41 doi: 10.1352/2009.114:23;nd41. [DOI] [PubMed]
  25. Reichow B, Wolery M. Comprehensive synthesis of early intensive behavioral interventions for young children with autism based on the UCLA young autism project model. J Autism Dev Disord 2009;39:23–41. https://doi.org/10.1007/s10803-008-0596-0 doi: 10.1007/s10803-008-0596-0. [DOI] [PubMed]
  26. Lovaas OI. Behavioral treatment and normal educational and intellectual functioning in young autistic children. J Consult Clin Psychol 1987;55:3–9. https://doi.org/10.1037//0022-006x.55.1.3 doi: 10.1037//0022-006x.55.1.3. [DOI] [PubMed]
  27. Dawson G. Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder. Dev Psychopathol 2008;20:775–803. https://doi.org/10.1017/S0954579408000370 doi: 10.1017/S0954579408000370. [DOI] [PubMed]
  28. Schreibman L, Dawson G, Stahmer AC, Landa R, Rogers SJ, McGee GG, et al. Naturalistic developmental behavioral interventions: empirically validated treatments for autism spectrum disorder. J Autism Dev Disord 2015;45:2411–28. https://doi.org/10.1007/s10803-015-2407-8 doi: 10.1007/s10803-015-2407-8. [DOI] [PMC free article] [PubMed]
  29. Milton DEM. So what exactly are autism interventions intervening with? Good Autism Pract 2014;15:6–14.
  30. Kupferstein H. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Adv Autism 2018;4:19–29. https://doi.org/10.1108/AIA-08-2017-0016 doi: 10.1108/AIA-08-2017-0016. [DOI]
  31. Leaf JB, Ross RK, Cihon JH, Weiss MJ. Evaluating Kupferstein’s claims of the relationship of behavioral intervention to PTSS for individuals with autism. Adv Autism 2018;4:122–9. https://doi.org/10.1108/AIA-02-2018-0007 doi: 10.1108/AIA-02-2018-0007. [DOI]
  32. Koegel LK, Koegel RL, Harrower JK, Carter CM. Pivotal response intervention I: overview of approach. Res Pract Persons Severe Disabil 1999;24:174–85. https://doi.org/10.2511/rpsd.24.3.174 doi: 10.2511/rpsd.24.3.174. [DOI]
  33. Rogers SJ, Herbison JM, Lewis HC, Pantone J, Reis K. An approach for enhancing the symbolic, communicative, and interpersonal functioning of young children with autism or severe emotional handicaps. J Early Interv 1986;10:135–48. https://doi.org/10.1177/105381518601000205 doi: 10.1177/105381518601000205. [DOI]
  34. Rogers SJ, Dawson G. Early Start Denver Model for Young Children with Autism: Promoting Language, Learning, and Engagement. New York, NY: Guilford Press; 2010.
  35. National Institute for Health and Care Excellence (NICE). Autism Spectrum Disorder in Under 19s: Support and Management. London: NICE; 2013. [PubMed]
  36. Griffith GM, Fletcher R, Hastings RP. A national UK census of applied behavior analysis school provision for children with autism. Res Autism Spect Dis 2012;6:798–805. https://doi.org/10.1016/j.rasd.2011.10.014 doi: 10.1016/j.rasd.2011.10.014. [DOI]
  37. Beam ABA services. Beam ABA services. 2018. URL: https://ourprices.beamaba.com/ (accessed 20 November 2018).
  38. Eikeseth S, Hayward D, Gale C. UK Young Autism Project: Information Pack. 2018. URL: www.ukyap.org/_userfiles/pages/file/02%20Information%20Pack%20June%202017.pdf (accessed 20 November 2018).
  39. The Owl Centre. The Owl Centre for Children’s Independent Therapy. 2018. URL: https://theowltherapycentre.co.uk/fees-enquiry (accessed 21 February 2020).
  40. ABA4ALL. ABA4ALL. 2018. URL: www.abaa4all.com/aba-in-the-uk (accessed 20 November 2018).
  41. Horner RH, Carr EG, Halle J, McGee G, Odom S, Wolery M. The use of single-subject research to identify evidence-based practice in special education. Except Child 2005;71:165–79. https://doi.org/10.1177/001440290507100203 doi: 10.1177/001440290507100203. [DOI]
  42. Eldevik S, Hastings RP, Hughes JC, Jahr E, Eikeseth S, Cross S. Meta-analysis of early intensive behavioral intervention for children with autism. J Clin Child Adolesc Psychol 2009;38:439–50. https://doi.org/10.1080/15374410902851739 doi: 10.1080/15374410902851739. [DOI] [PubMed]
  43. Eikeseth S. Outcome of comprehensive psycho-educational interventions for young children with autism. Res Dev Disabil 2009;30:158–78. https://doi.org/10.1016/j.ridd.2008.02.003 doi: 10.1016/j.ridd.2008.02.003. [DOI] [PubMed]
  44. Peters-Scheffer N, Didden R, Korzilius H, Matson J. Cost comparison of early intensive behavioral intervention and treatment as usual for children with autism spectrum disorder in the Netherlands. Res Dev Disabil 2012;33:1763–72. https://doi.org/10.1016/j.ridd.2012.04.006 doi: 10.1016/j.ridd.2012.04.006. [DOI] [PubMed]
  45. Reichow B, Barton EE, Boyd BA, Hume K. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD): a systematic review. Campbell Syst Rev 2014;9. https://doi.org/10.4073/csr.2014.9 doi: 10.4073/csr.2014.9. [DOI] [PubMed]
  46. Spreckley M, Boyd R. Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: a systematic review and meta-analysis. J Pediatr 2009;154:338–44. https://doi.org/10.1016/j.jpeds.2008.09.012 doi: 10.1016/j.jpeds.2008.09.012. [DOI] [PubMed]
  47. Virués-Ortega J. Applied behavior analytic intervention for autism in early childhood: meta-analysis, meta-regression and dose–response meta-analysis of multiple outcomes. Clin Psychol Rev 2010;30:387–99. https://doi.org/10.1016/j.cpr.2010.01.008 doi: 10.1016/j.cpr.2010.01.008. [DOI] [PubMed]
  48. Warren Z, McPheeters ML, Sathe N, Foss-Feig JH, Glasser A, Veenstra-Vanderweele J. A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics 2011;127:e1303–11. https://doi.org/10.1542/peds.2011-0426 doi: 10.1542/peds.2011-0426. [DOI] [PubMed]
  49. Waddington H, van der Meer L, Sigafoos J. Effectiveness of the early start Denver model: a systematic review. J Autism Dev Disord 2016;3:93–106. https://doi.org/10.1007/s40489-015-0068-3 doi: 10.1007/s40489-015-0068-3. [DOI]
  50. Chasson GS, Harris GE, Neely WJ. Cost comparison of early intensive behavioral intervention and special education for children with autism. J Child Fam Stud 2007;16:401–13. https://doi.org/10.1007/s10826-006-9094-1 doi: 10.1007/s10826-006-9094-1. [DOI]
  51. Cidav Z, Munson J, Estes A, Dawson G, Rogers S, Mandell D. Cost offset associated with Early Start Denver Model for children with autism. J Am Acad Child Adolesc Psychiatry 2017;56:777–83. https://doi.org/10.1016/j.jaac.2017.06.007 doi: 10.1016/j.jaac.2017.06.007. [DOI] [PMC free article] [PubMed]
  52. Jacobson JW, Mulick JA, Green G. Cost-benefit estimates for early intensive behavioral intervention for young children with autism – general model and single state case. Behav Interv 1998;13:201–26. https://doi.org/10.1002/(SICI)1099-078X(199811)13:43.0.CO;2-R doi: 10.1002/(SICI)1099-078X(199811)13:43.0.CO;2-R. [DOI]
  53. Motiwala SS, Gupta S, Lilly MB, Ungar WJ, Coyte PC. The cost-effectiveness of expanding intensive behavioural intervention to all autistic children in Ontario. Healthc Policy 2006;1:135–51. https://doi.org/10.12927/hcpol.2006.17884 doi: 10.12927/hcpol.2006.17884. [DOI] [PMC free article] [PubMed]
  54. Penner M, Rayar M, Bashir N, Roberts SW, Hancock-Howard RL, Coyte PC. Cost-effectiveness analysis comparing pre-diagnosis autism spectrum disorder (ASD)-targeted intervention with Ontario’s Autism Intervention Program. J Autism Dev Disord 2015;45:2833–47. https://doi.org/10.1007/s10803-015-2447-0 doi: 10.1007/s10803-015-2447-0. [DOI] [PubMed]
  55. Carr D, Felce J. The effects of PECS teaching to phase III on the communicative interactions between children with autism and their teachers. J Autism Dev Disord 2007;37:724–37. https://doi.org/10.1007/s10803-006-0203-1 doi: 10.1007/s10803-006-0203-1. [DOI] [PubMed]
  56. Mesibov GB, Shea V. The TEACCH program in the era of evidence-based practice. J Autism Dev Disord 2010;40:570–9. https://doi.org/10.1007/s10803-009-0901-6 doi: 10.1007/s10803-009-0901-6. [DOI] [PubMed]
  57. Cochrane Methods Group. Risk of Bias 2.0 Tool. URL: https://methods.cochrane.org/risk-bias-20-tool (accessed 28 February 2019).
  58. Sterne JA, Hernán MA, Reeves BC, Savović J, Berkman ND, Viswanathan M, et al. ROBINS-I: a tool for assessing risk of bias in non-randomised studies of interventions. BMJ 2016;355:i4919. https://doi.org/10.1136/bmj.i4919 doi: 10.1136/bmj.i4919. [DOI] [PMC free article] [PubMed]
  59. Sparrow SS, Balla DA, Cicchetti DV, Harrison PL. Vineland Adaptive Behavior Scales. Circle Pines, MN: American Guidance Service; 1984.
  60. Bayley N. Bayley Scales of Infant Development: Birth to Two Years. San Antonio, TX: Psychological Corporation; 1969.
  61. Bayley N. Bayley Scales of Infant Development: Manual. San Antonio, TX: Psychological Corporation; 1993.
  62. Bayley N. Bayley Scales of Infant and Toddler Development – Third Edition. J Psychoeduc Assess 2006;25:180–90. https://doi.org/10.1177/0734282906297199 doi: 10.1177/0734282906297199. [DOI]
  63. Wechsler D. Wechsler Intelligence Scale for Children. San Antonio, TX: Psychological Corporation; 1949.
  64. Wechsler D. WISC-III: Test de Inteligencia Para Niños/Wechsler Intelligence Scale for Children. San Antonio, TX: Psychological Corporation; 1993.
  65. Wechsler D. Wechsler Intelligence Scale for Children – Revised. San Antonio, TX: Psychological Corporation; 1974.
  66. Wechsler D. Wechsler Preschool and Primary Scale of Intelligence – Fourth Edition. San Antonio, TX: Psychological Corporation; 2012.
  67. Wechsler D. WPPSI-R: Wechsler Preschool and Primary Scale of Intelligence-Revised. San Antonio, TX: Psychological Corporation; 1989. https://doi.org/10.1037/t48859-000 doi: 10.1037/t48859-000. [DOI]
  68. Wechsler D. Wechsler Preschool and Primary Scale of Intelligence – Third Edition (WPPSI – III). San Antonio, TX: Psychological Corporation; 2002. https://doi.org/10.1037/t15177-000 doi: 10.1037/t15177-000. [DOI]
  69. Roid GH, Pomplun M. The Stanford–Binet Intelligence Scales. New York, NY: Guilford Press; 2012.
  70. Roid GH, Sampers JL. Merrill–Palmer-Revised Scales of Development. Wood Dale, IL: Stoelting; 2004. https://doi.org/10.1037/t06030-000 doi: 10.1037/t06030-000. [DOI]
  71. Gardner MF. Expressive One-Word Picture Vocabulary Test, Revised: EO-WPVT-R. Novato, CA: Academic Therapy Publications; 1990.
  72. Brownell R. Expressive One-Word Picture Vocabulary Test: Manual. Novato, CA: Academic Therapy Publications; 2000.
  73. Dunn LM, Dunn LM, Whetton C, Burley J. British Picture Vocabulary Scale 2nd Edition (BPVS-II). Windsor: NFER-Nelson; 1997.
  74. Reynell J, Huntley M. Reynell Developmental Language Scale – Revised Manual. 2nd revision. Slough: National Foundation for Educational Research; 1985.
  75. Edwards S, Garman M, Hughes A, Letts C, Sinka I. The Reynell Developmental Language Scales III (RDLS) manual. Int J Lang Commun Disord 1997;34:151–91. https://doi.org/10.1080/136828299247487 doi: 10.1080/136828299247487. [DOI] [PubMed]
  76. Mullen EM. Mullen Scales of Early Learning. Circle Pines, MN: AGS Publishing; 1995.
  77. Lord C, Rutter M. Social Communication Questionnaire (SCQ). Torrance, CA: WPS; 2003.
  78. Lord C, Risi S, Lambrecht L, Cook EH, Leventhal BL, DiLavore PC, et al. The autism diagnostic observation schedule-generic: a standard measure of social and communication deficits associated with the spectrum of autism. J Autism Dev Disord 2000;30:205–23. https://doi.org/10.1023/A:1005592401947 doi: 10.1023/A:1005592401947. [DOI] [PubMed]
  79. Rutter M, Le Couteur A, Lord C. Autism Diagnostic Interview – Revised. Los Angeles, CA: Western Psychological Services; 2003.
  80. Conners CK. Conners’ Rating Scales – Revised: CRS-R. North Tonawanda, NJ; Multi-Health Systems; 2001.
  81. Riley RD, Kauser I, Bland M, Thijs L, Staessen JA, Wang J, et al. Meta-analysis of randomised trials with a continuous outcome according to baseline imbalance and availability of individual participant data. Stat Med 2013;32:2747–66. https://doi.org/10.1002/sim.5726 doi: 10.1002/sim.5726. [DOI] [PubMed]
  82. Birnbrauer JS, Leach DJ. The Murdoch early intervention program after 2 years. Behav Change 1993;10:63–74. https://doi.org/10.1017/S0813483900005556 doi: 10.1017/S0813483900005556. [DOI]
  83. Dawson G, Rogers S, Munson J, Smith M, Winter J, Greenson J, et al. Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model. Pediatrics 2010;125:e17–23. https://doi.org/10.1542/peds.2009-0958 doi: 10.1542/peds.2009-0958. [DOI] [PMC free article] [PubMed]
  84. Eikeseth S, Klintwall L, Jahr E, Karlsson P. Outcome for children with autism receiving early and intensive behavioral intervention in mainstream preschool and kindergarten settings. Res Autism Spectr Disord 2012;6:829–35. https://doi.org/10.1016/j.rasd.2011.09.002 doi: 10.1016/j.rasd.2011.09.002. [DOI]
  85. Eikeseth S, Smith T, Jahr E, Eldevik S. Intensive behavioral treatment at school for 4- to 7-year-old children with autism. A 1-year comparison controlled study. Behav Modif 2002;26:49–68. https://doi.org/10.1177/0145445502026001004 doi: 10.1177/0145445502026001004. [DOI] [PubMed]
  86. Eldevik S, Hastings RP, Jahr E, Hughes JC. Outcomes of behavioral intervention for children with autism in mainstream pre-school settings. J Autism Dev Disord 2012;42:210–20. https://doi.org/10.1007/s10803-011-1234-9 doi: 10.1007/s10803-011-1234-9. [DOI] [PMC free article] [PubMed]
  87. Farrell P, Trigonaki N, Webster D. An exploratory evaluation of two early intervention programmes for young children with autism. Educ Child Psychol 2005;22:29.
  88. Haglund N, Dahlgren S, Rastam M, Gustafsson P, Kallen K. Improvement of autism symptoms after comprehensive intensive early interventions in a clinical setting. Eur Psychiatry 2017;41:S129. https://doi.org/10.1016/j.eurpsy.2017.01.1940 doi: 10.1016/j.eurpsy.2017.01.1940. [DOI]
  89. Magiati I, Charman T, Howlin P. A two-year prospective follow-up study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders. J Child Psychol Psychiatry 2007;48:803–12. https://doi.org/10.1111/j.1469-7610.2007.01756.x doi: 10.1111/j.1469-7610.2007.01756.x. [DOI] [PubMed]
  90. Reed P, Osborne LA, Corness M. Brief report: relative effectiveness of different home-based behavioral approaches to early teaching intervention. J Autism Dev Disord 2007;37:1815–21. https://doi.org/10.1007/s10803-006-0306-8 doi: 10.1007/s10803-006-0306-8. [DOI] [PubMed]
  91. Reed P, Osborne LA, Corness M. The real-world effectiveness of early teaching interventions for children with autism spectrum disorder. Except Child 2007;73:417–33. https://doi.org/10.1177/001440290707300402 doi: 10.1177/001440290707300402. [DOI]
  92. Remington B, Hastings RP, Kovshoff H, degli Espinosa F, Jahr E, Brown T, et al. Early intensive behavioral intervention: outcomes for children with autism and their parents after two years. Am J Ment Retard 2007;112:418–38. https://doi.org/10.1352/0895-8017(2007)112[418:EIBIOF]2.0.CO;2 doi: 10.1352/0895-8017(2007)112[418:EIBIOF]2.0.CO;2. [DOI] [PubMed]
  93. Vivanti G, Paynter J, Duncan E, Fothergill H, Dissanayake C, Rogers SJ, Victorian ASELCC Team. Effectiveness and feasibility of the Early Start Denver Model implemented in a group-based community childcare setting. J Autism Dev Disord 2014;44:3140–53. https://doi.org/10.1007/s10803-014-2168-9 doi: 10.1007/s10803-014-2168-9. [DOI] [PubMed]
  94. Zachor DA, Ben-Itzchak E, Rabinovich A-L, Lahat E. Change in autism core symptoms with intervention. Res Autism Spect Dis 2007;1:304–17. https://doi.org/10.1016/j.rasd.2006.12.001 doi: 10.1016/j.rasd.2006.12.001. [DOI]
  95. Eikeseth S, Smith T, Jahr E, Eldevik S. Outcome for children with autism who began intensive behavioral treatment between ages 4 and 7: a comparison controlled study. Behav Modif 2007;31:264–78. https://doi.org/10.1177/0145445506291396 doi: 10.1177/0145445506291396. [DOI] [PubMed]
  96. Magiati I, Moss J, Charman T, Howlin P. Patterns of change in children with autism spectrum disorders who received community based comprehensive interventions in their pre-school years: a seven year follow-up study. Res Autism Spectr Disord 2011;5:1016–27. https://doi.org/10.1016/j.rasd.2010.11.007 doi: 10.1016/j.rasd.2010.11.007. [DOI]
  97. Zachor DA, Ben Itzchak E. Treatment approach, autism severity and intervention outcomes in young children. Res Autism Spect Dis 2010;4:425–32. https://doi.org/10.1016/j.rasd.2009.10.013 doi: 10.1016/j.rasd.2009.10.013. [DOI]
  98. McEachin JJ, Smith T, Lovaas OI. Long-term outcome for children with autism who received early intensive behavioral treatment. Am J Ment Retard 1993;97:359–72. [PubMed]
  99. Hayward D, Eikeseth S, Gale C, Morgan S. Assessing progress during treatment for young children with autism receiving intensive behavioural interventions. Autism 2009;13:613–33. https://doi.org/10.1177/1362361309340029 doi: 10.1177/1362361309340029. [DOI] [PubMed]
  100. Sallows GO, Graupner TD. Intensive behavioral treatment for children with autism: four-year outcome and predictors. Am J Ment Retard 2005;110:417–38. https://doi.org/10.1352/0895-8017(2005)110[417:IBTFCW]2.0.CO;2 doi: 10.1352/0895-8017(2005)110[417:IBTFCW]2.0.CO;2. [DOI] [PubMed]
  101. Stock R, Mirenda P, Smith IM. Comparison of community-based verbal behavior and pivotal response treatment programs for young children with autism spectrum disorder. Res Autism Spect Dis 2013;7:1168–81. https://doi.org/10.1016/j.rasd.2013.06.002 doi: 10.1016/j.rasd.2013.06.002. [DOI]
  102. Rogers SJ, Estes A, Lord C, Munson J, Rocha M, Winter J, et al. A multisite randomized controlled two-phase trial of the Early Start Denver Model compared to treatment as usual. J Am Acad Child Adolesc Psychiatry 2019;58:853–65. https://doi.org/10.1016/j.jaac.2019.01.004 doi: 10.1016/j.jaac.2019.01.004. [DOI] [PMC free article] [PubMed]
  103. Smith T, Groen AD, Wynn JW. Randomized trial of intensive early intervention for children with pervasive developmental disorder. Am J Ment Retard 2000;105:269–85. https://doi.org/10.1352/0895-8017(2000)105<0269:RTOIEI>2.0.CO;2 doi: 10.1352/0895-8017(2000)105&#x0003c;0269:RTOIEI&#x0003e;2.0.CO;2. [DOI] [PubMed]
  104. Cohen H, Amerine-Dickens M, Smith T. Early intensive behavioral treatment: replication of the UCLA model in a community setting. J Dev Behav Pediatr 2006;27(Suppl. 2):145–55. https://doi.org/10.1097/00004703-200604002-00013 doi: 10.1097/00004703-200604002-00013. [DOI] [PubMed]
  105. Howard JS, Sparkman CR, Cohen HG, Green G, Stanislaw H. A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Res Dev Disabil 2005;26:359–83. https://doi.org/10.1016/j.ridd.2004.09.005 doi: 10.1016/j.ridd.2004.09.005. [DOI] [PubMed]
  106. Dawson G, Jones EJ, Merkle K, Venema K, Lowy R, Faja S, et al. Early behavioral intervention is associated with normalized brain activity in young children with autism. J Am Acad Child Adolesc Psychiatry 2012;51:1150–9. https://doi.org/10.1016/j.jaac.2012.08.018 doi: 10.1016/j.jaac.2012.08.018. [DOI] [PMC free article] [PubMed]
  107. Estes A, Munson J, Rogers SJ, Greenson J, Winter J, Dawson G. Long-term outcomes of early intervention in 6-year-old children with autism spectrum disorder. J Am Acad Child Adolesc Psychiatry 2015;54:580–7. https://doi.org/10.1016/j.jaac.2015.04.005 doi: 10.1016/j.jaac.2015.04.005. [DOI] [PMC free article] [PubMed]
  108. Howard JS, Stanislaw H, Green G, Sparkman CR, Cohen HG. Comparison of behavior analytic and eclectic early interventions for young children with autism after three years. Res Dev Disabil 2014;35:3326–44. https://doi.org/10.1016/j.ridd.2014.08.021 doi: 10.1016/j.ridd.2014.08.021. [DOI] [PubMed]
  109. Howlin P, Magiati I, Charman T. Early intensive behavioural intervention vs specialist nursery provision for pre school children with autism spectrum disorders. J Intellect Disabil Res 2007;51:657. doi: 10.1111/j.1469-7610.2007.01756.x. [DOI] [PubMed]
  110. Kovshoff H, Hastings RP, Remington B. Two-year outcomes for children with autism after the cessation of early intensive behavioral intervention. Behav Modif 2011;35:427–50. https://doi.org/10.1177/0145445511405513 doi: 10.1177/0145445511405513. [DOI] [PubMed]
  111. Smith T, Groen AD, Wynn JW. Randomized Trial of Intensive Early Intervention for Children with Pervasive Developmental Disorder. In Feldman MA, editor. Early Intervention: The Essential Readings. Malden: Blackwell Publishing; 2004. pp. 153–81. https://doi.org/10.1002/9780470755778.ch6 doi: 10.1002/9780470755778.ch6. [DOI]
  112. Sullivan K. The Early Start Denver Model: outcomes and moderators of an intervention for toddlers with autism. Diss Abstr Int 2014;75.
  113. Jick H, Kaye JA, Black C. Changes in risk of autism in the U.K. for birth cohorts 1990–1998. Epidemiology 2003;14:630–2. https://doi.org/10.1097/01.EDE.0000082044.88833.c4 doi: 10.1097/01.EDE.0000082044.88833.c4. [DOI] [PubMed]
  114. Hagberg KW, Jick H. Autism in the UK for birth cohorts 1988–2001. Epidemiology 2010;21:426–7. https://doi.org/10.1097/EDE.0b013e3181d61dd9 doi: 10.1097/EDE.0b013e3181d61dd9. [DOI] [PubMed]
  115. King M, Bearman P. Diagnostic change and the increased prevalence of autism. Int J Epidemiol 2009;38:1224–34. https://doi.org/10.1093/ije/dyp261 doi: 10.1093/ije/dyp261. [DOI] [PMC free article] [PubMed]
  116. Fisch GS. Nosology and epidemiology in autism: classification counts. Am J Med Genet Part C Semin Med Genet 2012;160:91–103. https://doi.org/10.1002/ajmg.c.31325 doi: 10.1002/ajmg.c.31325. [DOI] [PubMed]
  117. Taylor B. Vaccines and the changing epidemiology of autism. Child Care Health Dev 2006;32:511–19. https://doi.org/10.1111/j.1365-2214.2006.00655.x doi: 10.1111/j.1365-2214.2006.00655.x. [DOI] [PubMed]
  118. Weitlauf AS, McPheeters ML, Peters B, Sathe N, Travis R, Aiello R, et al. Therapies for Children with Autism Spectrum Disorder. Rockville, MD: Agency for Healthcare Research and Quality; 2014.
  119. McConachie H, Parr JR, Glod M, Hanratty J, Livingstone N, Oono IP, et al. Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technol Assess 2015;19(41). https://doi.org/10.3310/hta19410 doi: 10.3310/hta19410. [DOI] [PMC free article] [PubMed]
  120. Hoefman R, Payakachat N, van Exel J, Kuhlthau K, Kovacs E, Pyne J, Tilford JM. Caring for a child with autism spectrum disorder and parents’ quality of life: application of the CarerQol. J Autism Dev Disord 2014;44:1933–45. https://doi.org/10.1007/s10803-014-2066-1 doi: 10.1007/s10803-014-2066-1. [DOI] [PMC free article] [PubMed]
  121. McStay RL, Trembath D, Dissanayake C. Stress and family quality of life in parents of children with autism spectrum disorder: parent gender and the double ABCX model. J Autism Dev Disord 2014;44:3101–18. https://doi.org/10.1007/s10803-014-2178-7 doi: 10.1007/s10803-014-2178-7. [DOI] [PubMed]
  122. Vasilopoulou E, Nisbet J. The quality of life of parents of children with autism spectrum disorder: a systematic review. Res Autism Spect Dis 2016;23:36–49. https://doi.org/10.1016/j.rasd.2015.11.008 doi: 10.1016/j.rasd.2015.11.008. [DOI]
  123. Kuhlthau K, Payakachat N, Delahaye J, Hurson J, Pyne JM, Kovacs E, et al. Quality of life for parents of children with autism spectrum disorders. Res Autism Spect Dis 2014;8:1339–50. https://doi.org/10.1016/j.rasd.2014.07.002 doi: 10.1016/j.rasd.2014.07.002. [DOI]
  124. Tung LC, Huang CY, Tseng MH, Yen HC, Tsai YP, Lin YC, et al. Correlates of health-related quality of life and the perception of its importance in caregivers of children with autism. Res Autism Spect Dis 2014;8:1235–42. https://doi.org/10.1016/j.rasd.2014.06.010 doi: 10.1016/j.rasd.2014.06.010. [DOI]
  125. Totsika V, Hastings RP, Emerson E, Berridge DM, Lancaster GA. Behavior problems at 5 years of age and maternal mental health in autism and intellectual disability. J Abnorm Child Psychol 2011;39:1137–47. https://doi.org/10.1007/s10802-011-9534-2 doi: 10.1007/s10802-011-9534-2. [DOI] [PubMed]
  126. Barrett B, Byford S, Sharac J, Hudry K, Leadbitter K, Temple K, et al. Service and wider societal costs of very young children with autism in the UK. J Autism Dev Disord 2012;42:797–804. https://doi.org/10.1007/s10803-011-1306-x doi: 10.1007/s10803-011-1306-x. [DOI] [PubMed]
  127. Payakachat N, Tilford JM, Kuhlthau KA, van Exel NJ, Kovacs E, Bellando J, et al. Predicting health utilities for children with autism spectrum disorders. Autism Res 2014;7:649–63. https://doi.org/10.1002/aur.1409 doi: 10.1002/aur.1409. [DOI] [PMC free article] [PubMed]
  128. Rogge N, Janssen J. The economic costs of autism spectrum disorder: a literature review. J Autism Dev Disord 2019;49:2873–900. https://doi.org/10.1007/s10803-019-04014-z doi: 10.1007/s10803-019-04014-z. [DOI] [PubMed]
  129. National Institute for Health and Care Excellence (NICE). Guide to the Methods of Technology Appraisal 2013. London: NICE; 2013. [PubMed]
  130. Khanna R, Jariwala-Parikh K, West-Strum D, Mahabaleshwarkar R. Health-related quality of life and its determinants among adults with autism. Res Autism Spect Dis 2014;8:157–67. https://doi.org/10.1016/j.rasd.2013.11.003 doi: 10.1016/j.rasd.2013.11.003. [DOI]
  131. Howlin P, Magiati I. Autism spectrum disorder: outcomes in adulthood. Curr Opin Psychiatry 2017;30:69–76. https://doi.org/10.1097/YCO.0000000000000308 doi: 10.1097/YCO.0000000000000308. [DOI] [PubMed]
  132. Cederlund M, Hagberg B, Billstedt E, Gillberg IC, Gillberg C. Asperger syndrome and autism: a comparative longitudinal follow-up study more than 5 years after original diagnosis. J Autism Dev Disord 2008;38:72–85. https://doi.org/10.1007/s10803-007-0364-6 doi: 10.1007/s10803-007-0364-6. [DOI] [PubMed]
  133. Esbensen AJ, Bishop S, Seltzer MM, Greenberg JS, Taylor JL. Comparisons between individuals with autism spectrum disorders and individuals with Down syndrome in adulthood. Am J Intellect Dev Disabil 2010;115:277–90. https://doi.org/10.1352/1944-7558-115.4.277 doi: 10.1352/1944-7558-115.4.277. [DOI] [PMC free article] [PubMed]
  134. Farley MA, McMahon WM, Fombonne E, Jenson WR, Miller J, Gardner M, et al. Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Res 2009;2:109–18. https://doi.org/10.1002/aur.69 doi: 10.1002/aur.69. [DOI] [PubMed]
  135. Barrett B, Mosweu I, Jones CR, Charman T, Baird G, Simonoff E, et al. Comparing service use and costs among adolescents with autism spectrum disorders, special needs and typical development. Autism 2015;19:562–9. https://doi.org/10.1177/1362361314536626 doi: 10.1177/1362361314536626. [DOI] [PubMed]
  136. Kirkham P. ‘The line between intervention and abuse’ – autism and applied behaviour analysis. Hist Hum Sci 2017;30:107–26. https://doi.org/10.1177/0952695117702571 doi: 10.1177/0952695117702571. [DOI]
  137. Bilder D, Botts EL, Smith KR, Pimentel R, Farley M, Viskochil J, et al. Excess mortality and causes of death in autism spectrum disorders: a follow up of the 1980s Utah/UCLA autism epidemiologic study. J Autism Dev Disord 2013;43:1196–204. https://doi.org/10.1007/s10803-012-1664-z doi: 10.1007/s10803-012-1664-z. [DOI] [PMC free article] [PubMed]
  138. Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. Premature mortality in autism spectrum disorder. Br J Psychiatry 2016;208:232–8. https://doi.org/10.1192/bjp.bp.114.160192 doi: 10.1192/bjp.bp.114.160192. [DOI] [PubMed]
  139. Mouridsen SE, Brønnum-Hansen H, Rich B, Isager T. Mortality and causes of death in autism spectrum disorders: an update. Autism 2008;12:403–14. https://doi.org/10.1177/1362361308091653 doi: 10.1177/1362361308091653. [DOI] [PubMed]
  140. Pickett J, Xiu E, Tuchman R, Dawson G, Lajonchere C. Mortality in individuals with autism, with and without epilepsy. J Child Neurol 2011;26:932–9. https://doi.org/10.1177/0883073811402203 doi: 10.1177/0883073811402203. [DOI] [PubMed]
  141. Schendel DE, Overgaard M, Christensen J, Hjort L, Jørgensen M, Vestergaard M, Parner ET. Association of psychiatric and neurologic comorbidity with mortality among persons with autism spectrum disorder in a Danish population. JAMA Pediatr 2016;170:243–50. https://doi.org/10.1001/jamapediatrics.2015.3935 doi: 10.1001/jamapediatrics.2015.3935. [DOI] [PubMed]
  142. Shavelle RM, Strauss DJ, Pickett J. Causes of death in autism. J Autism Dev Disord 2001;31:569–76. https://doi.org/10.1023/a:1013247011483 doi: 10.1023/a:1013247011483. [DOI] [PubMed]
  143. Office for National Statistics (ONS). National Life Tables, UK: 2015 to 2017. London: ONS; 2018.
  144. GOV.UK. School Attendance and Absence. 2018. URL: www.gov.uk/school-attendance-absence (accessed 17 November 2018).
  145. Szende A, Janssen B, Cabases J. Self-Reported Population Health: An International Perspective Based on EQ-5D. New York, NY: Springer; 2014. https://doi.org/10.1007/978-94-007-7596-1 doi: 10.1007/978-94-007-7596-1. [DOI] [PubMed]
  146. Curtis L, Burns A. Unit Costs of Health and Social Care 2017. Canterbury: Personal Social Services Research Unit, University of Kent; 2017.
  147. Knapp M, Romeo R, Beecham J. Economic cost of autism in the UK. Autism 2009;13:317–36. https://doi.org/10.1177/1362361309104246 doi: 10.1177/1362361309104246. [DOI] [PubMed]
  148. Croen LA, Shankute N, Davignon M, Massolo ML, Yoshida C. Demographic and clinical characteristics associated with engagement in behavioral health treatment among children with autism spectrum disorders. J Autism Dev Disord 2017;47:3347–57. https://doi.org/10.1007/s10803-017-3247-5 doi: 10.1007/s10803-017-3247-5. [DOI] [PMC free article] [PubMed]
  149. Taylor B, Jick H, Maclaughlin D. Prevalence and incidence rates of autism in the UK: time trend from 2004–2010 in children aged 8 years. BMJ Open 2013;3:e003219. https://doi.org/10.1136/bmjopen-2013-003219 doi: 10.1136/bmjopen-2013-003219. [DOI] [PMC free article] [PubMed]
  150. Brett D, Warnell F, McConachie H, Parr JR. Factors affecting age at ASD diagnosis in UK: no evidence that diagnosis age has decreased between 2004 and 2014. J Autism Dev Disord 2016;46:1974–84. https://doi.org/10.1007/s10803-016-2716-6 doi: 10.1007/s10803-016-2716-6. [DOI] [PMC free article] [PubMed]
  151. Rogers SJ. Neuropsychology of autism in young children and its implications for early intervention. Ment Retard Dev D R 1998;4:104–12. https://doi.org/10.1002/(SICI)1098-2779(1998)4:23.0.CO;2-P doi: 10.1002/(SICI)1098-2779(1998)4:23.0.CO;2-P. [DOI]
  152. Smith T, Iadarola S. Evidence base update for autism spectrum disorder. J Clin Child Adolesc Psychol 2015;44:897–922. https://doi.org/10.1080/15374416.2015.1077448 doi: 10.1080/15374416.2015.1077448. [DOI] [PubMed]
  153. Rutter M. Incidence of autism spectrum disorders: changes over time and their meaning. Acta Paediatr 2005;94:2–15. https://doi.org/10.1111/j.1651-2227.2005.tb01779.x doi: 10.1111/j.1651-2227.2005.tb01779.x. [DOI] [PubMed]
  154. Green J, Charman T, McConachie H, Aldred C, Slonims V, Howlin P, et al. Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial. Lancet 2010;375:2152–60. https://doi.org/10.1016/S0140-6736(10)60587-9 doi: 10.1016/S0140-6736(10)60587-9. [DOI] [PMC free article] [PubMed]
  155. McConkey R, Truesdale-Kennedy M, Crawford H, McGreevy E, Reavey M, Cassidy A. Pre-schoolers with autism spectrum disorders: evaluating the impact of a home-based intervention to promote their communication. Early Child Dev Care 2010;180:299–315. https://doi.org/10.1080/03004430801899187 doi: 10.1080/03004430801899187. [DOI]
  156. Yoder P, Stone WL. Randomized comparison of two communication interventions for pre-schoolers with autism spectrum disorders. J Consult Clin Psychol 2006;74:426–35. https://doi.org/10.1037/0022-006X.74.3.426 doi: 10.1037/0022-006X.74.3.426. [DOI] [PubMed]
  157. Green J. Editorial: Process to progress? Investigative trials, mechanism and clinical science. J Child Psychol Psychiatry 2015;56:1–3. https://doi.org/10.1111/jcpp.12377 doi: 10.1111/jcpp.12377. [DOI] [PubMed]
  158. World Health Organization (WHO). ICD-10 Classifications of Mental and Behavioural Disorder: Clinical Descriptions and Diagnostic Guidelines. Geneva: WHO; 1992.
  159. Lovaas OI, Ackerman A, Alexander D, Firestone P, Perkins M, Young DB. Teaching Developmentally Disabled Children: The ME Book. Austin, TX: Pro-Ed; 1981.
  160. Lovaas OI, Leaf RL. Five Videotapes for Teaching Developmentally Disabled Children. Austin, TX: Pro-Ed; 1981.
  161. Schopler E, Lansing M, Waters L. Individualized Assessment and Treatment for Autistic and Developmentally Disabled Children: Vol. 3. Teaching Activities for Autistic Children. Austin, TX: Pro-Ed; 1983.
  162. Ayres AJ. Sensory Integration and Learning Disorders. Los Angeles, CA: Western Psychological Services; 1972.
  163. Leaf R, McEachin J. A Work in Progress. New York, NY: DRL Books; 1999.
  164. Lovaas OI. Teaching Individuals with Developmental Delays: Basic Intervention Techniques. Austin, TX: Pro-Ed; 2003.
  165. Maurice C, Green G, Luce SC. Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals. Austin, TX: Pro-Ed; 1996.
  166. Sundberg ML, Partington JW. Teaching Language to Children with Autism or Other Developmental Disabilities. Danville, CA: Behavior Analysts, Inc.; 1998. doi: 10.1007/BF03392946. [DOI] [PMC free article] [PubMed]
  167. Philips Z, Bojke L, Sculpher M, Claxton K, Golder S. Good practice guidelines for decision-analytic modelling in health technology assessment: a review and consolidation of quality assessment. PharmacoEconomics 2006;24:355–71. https://doi.org/10.2165/00019053-200624040-00006 doi: 10.2165/00019053-200624040-00006. [DOI] [PubMed]
  168. Freeman BJ. Guidelines for evaluating intervention programs for children with autism. J Autism Dev Disord 1997;27:641–51. https://doi.org/10.1023/a:1025850715183 doi: 10.1023/a:1025850715183. [DOI] [PubMed]
  169. Rogers SJ, Estes A, Lord C, Vismara L, Winter J, Fitzpatrick A, et al. Effects of a brief Early Start Denver Model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: a randomized controlled trial. J Am Acad Child Adolesc Psychiatry 2012;51:1052–65. https://doi.org/10.1016/j.jaac.2012.08.003 doi: 10.1016/j.jaac.2012.08.003. [DOI] [PMC free article] [PubMed]
  170. Bourke-Taylor H, Pallant JF, Law M, Howie L. Predicting mental health among mothers of school-aged children with developmental disabilities: the relative contribution of child, maternal and environmental factors. Res Dev Disabil 2012;33:1732–40. https://doi.org/10.1016/j.ridd.2012.04.011 doi: 10.1016/j.ridd.2012.04.011. [DOI] [PubMed]
  171. Chuang IC, Tseng MH, Lu L, Shieh JY, Cermak SA. Predictors of the health-related quality of life in pre-school children with autism spectrum disorders. Res Autism Spectr Disord 2014;8:1062–70. https://doi.org/10.1016/j.rasd.2014.05.015 doi: 10.1016/j.rasd.2014.05.015. [DOI]
  172. Clark BG, Magill-Evans JE, Koning CJ. Youth with autism spectrum disorders: self- and proxy-reported quality of life and adaptive functioning. Focus Autism Other Dev Disabil 2015;30:57–64. https://doi.org/10.1177/1088357614522289 doi: 10.1177/1088357614522289. [DOI]
  173. Domellöf E, Hedlund L, Ödman P. Health-related quality of life of children and adolescents with functional disabilities in a northern Swedish county. Qual Life Res 2014;23:1877–82. https://doi.org/10.1007/s11136-013-0613-4 doi: 10.1007/s11136-013-0613-4. [DOI] [PubMed]
  174. de Vries M, Geurts H. Influence of autism traits and executive functioning on quality of life in children with an autism spectrum disorder. J Autism Dev Disord 2015;45:2734–43. https://doi.org/10.1007/s10803-015-2438-1 doi: 10.1007/s10803-015-2438-1. [DOI] [PMC free article] [PubMed]
  175. Delahaye J, Kovacs E, Sikora D, Hall TA, Orlich F, Clemons TE, et al. The relationship between health-related quality of life and sleep problems in children with autism spectrum disorders. Res Autism Spectr Disord 2014;8:292–303. https://doi.org/10.1016/j.rasd.2013.12.015 doi: 10.1016/j.rasd.2013.12.015. [DOI]
  176. Egilson ST, Ólafsdóttir LB, Leósdóttir T, Saemundsen E. Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: self- and proxy-reports. Autism 2017;21:133–41. https://doi.org/10.1177/1362361316630881 doi: 10.1177/1362361316630881. [DOI] [PubMed]
  177. Forsyth R, Colver A, Alvanides S, Woolley M, Lowe M. Participation of young severely disabled children is influenced by their intrinsic impairments and environment. Dev Med Child Neurol 2007;49:345–9. https://doi.org/10.1111/j.1469-8749.2007.00345.x doi: 10.1111/j.1469-8749.2007.00345.x. [DOI] [PubMed]
  178. Forsyth R, McNally R, James P, Crossland K, Woolley M, Colver A. Variation at local government level in the support for families of severely disabled children and the factors that affect it. Dev Med Child Neurol 2010;52:e259–66. https://doi.org/10.1111/j.1469-8749.2010.03778.x doi: 10.1111/j.1469-8749.2010.03778.x. [DOI] [PubMed]
  179. Jahan MU, Karim MR, Rahman A, Akhter S. Cognitive functions and health related quality of life of institutional autism spectrum disorder children in Dhaka city. Bangladesh Med Res Counc Bull 2015;41:151–9. https://doi.org/10.3329/bmrcb.v41i3.29973 doi: 10.3329/bmrcb.v41i3.29973. [DOI] [PubMed]
  180. Kose S, Erermis S, Ozturk O, Ozbaran B, Demiral N, Bildik T, et al. Health related quality of life in children with autism spectrum disorders: the clinical and demographic related factors in Turkey. Res Autism Spectr Disord 2013;7:213–20. https://doi.org/10.1016/j.rasd.2012.09.009 doi: 10.1016/j.rasd.2012.09.009. [DOI]
  181. Kuhlthau K, Kovacs E, Hall T, Clemmons T, Orlich F, Delahaye J, et al. Health-related quality of life for children with ASD: associations with behavioral characteristics. Res Autism Spectr Disord 2013;7:1035–42. https://doi.org/10.1016/j.rasd.2013.04.006 doi: 10.1016/j.rasd.2013.04.006. [DOI]
  182. Kuhlthau K, Orlich F, Hall TA, Sikora D, Kovacs EA, Delahaye J, Clemons TE. Health-Related Quality of Life in children with autism spectrum disorders: results from the Autism Treatment Network. J Autism Dev Disord 2010;40:721–9. https://doi.org/10.1007/s10803-009-0921-2 doi: 10.1007/s10803-009-0921-2. [DOI] [PubMed]
  183. Lai CJ, Chen CL, Chen CH, Chen CY, Chen HC, Chuang CY, et al. Health related quality of life in pre-school children with autism spectrum disorder of different cognition functions. Arch Phys Med Rehabil 2016;97:e104. https://doi.org/10.1016/j.apmr.2016.08.321 doi: 10.1016/j.apmr.2016.08.321. [DOI]
  184. Lavelle TA. Examining health and economic outcomes associated with pediatric medical conditions in the United States. Diss Abstr Int 2012;73.
  185. Limbers CA, Heffer RW, Varni JW. Health-related quality of life and cognitive functioning from the perspective of parents of school-aged children with Asperger’s syndrome utilizing the PedsQL™. J Autism Dev Disord 2009;39:1529–41. https://doi.org/10.1007/s10803-009-0777-5 doi: 10.1007/s10803-009-0777-5. [DOI] [PubMed]
  186. Meral BF, Fidan A. Measuring the impact of feeding covariates on health-related quality of life in children with autism spectrum disorder. Res Autism Spectr Disord 2015;10:124–30. https://doi.org/10.1016/j.rasd.2014.11.009 doi: 10.1016/j.rasd.2014.11.009. [DOI]
  187. Ozturk O, Erermis S, Ercan ES, Gulen F, Basay BK, Basay O, et al. Does the quality of life in autism spectrum disorder differ from other chronic disorders and healthy children? Anadolu Psikiyatri Dergisi 2016;17:419–26. https://doi.org/10.5455/apd.185269 doi: 10.5455/apd.185269. [DOI]
  188. Petrou S, Johnson S, Wolke D, Hollis C, Kochhar P, Marlow N. Economic costs and preference-based health-related quality of life outcomes associated with childhood psychiatric disorders. Br J Psychiatry 2010;197:395–404. https://doi.org/10.1192/bjp.bp.110.081307 doi: 10.1192/bjp.bp.110.081307. [DOI] [PubMed]
  189. Potvin M-C. Participation in recreational activities in school age children with high functioning autism and their peers. Diss Abstr Int 2011;73:926.
  190. Potvin MC, Snider L, Prelock PA, Wood-Dauphinee S, Kehayia E. Health-related quality of life in children with high-functioning autism. Autism 2015;19:14–19. https://doi.org/10.1177/1362361313509730 doi: 10.1177/1362361313509730. [DOI] [PubMed]
  191. Sheldrick RC, Neger EN, Shipman D, Perrin EC. Quality of life of adolescents with autism spectrum disorders: concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports. Qual Life Res 2012;21:53–7. https://doi.org/10.1007/s11136-011-9916-5 doi: 10.1007/s11136-011-9916-5. [DOI] [PubMed]
  192. Shipman DL, Sheldrick RC, Perrin EC. Quality of life in adolescents with autism spectrum disorders: reliability and validity of self-reports. J Dev Behav Pediatr 2011;32:85–9. https://doi.org/10.1097/DBP.0b013e318203e558 doi: 10.1097/DBP.0b013e318203e558. [DOI] [PubMed]
  193. Sikora DM, Vora P, Coury DL, Rosenberg D. Attention-deficit/hyperactivity disorder symptoms, adaptive functioning, and quality of life in children with autism spectrum disorder. Pediatrics 2012;130(Suppl. 2):91–7. https://doi.org/10.1542/peds.2012-0900G doi: 10.1542/peds.2012-0900G. [DOI] [PubMed]
  194. Stokes MA, Kornienko L, Scheeren AM, Koot HM, Begeer S. A comparison of children and adolescent’s self-report and parental report of the PedsQL among those with and without autism spectrum disorder. Qual Life Res 2017;26:611–24. https://doi.org/10.1007/s11136-016-1490-4 doi: 10.1007/s11136-016-1490-4. [DOI] [PubMed]
  195. Tavernor L, Barron E, Rodgers J, McConachie H. Finding out what matters: validity of quality of life measurement in young people with ASD. Child Care Health Dev 2013;39:592–601. https://doi.org/10.1111/j.1365-2214.2012.01377.x doi: 10.1111/j.1365-2214.2012.01377.x. [DOI] [PubMed]
  196. Tilford JM, Payakachat N, Kovacs E, Pyne JM, Brouwer W, Nick TG, et al. Preference-based health-related quality-of-life outcomes in children with autism spectrum disorders: a comparison of generic instruments. PharmacoEconomics 2012;30:661–79. https://doi.org/10.2165/11597200-000000000-00000 doi: 10.2165/11597200-000000000-00000. [DOI] [PMC free article] [PubMed]
  197. Tilford JM, Payakachat N, Kuhlthau KA, Pyne JM, Kovacs E, Bellando J, et al. Treatment for sleep problems in children with autism and caregiver spillover effects. J Autism Dev Disord 2015;45:3613–23. https://doi.org/10.1007/s10803-015-2507-5 doi: 10.1007/s10803-015-2507-5. [DOI] [PMC free article] [PubMed]
  198. van Steensel FJ, Bögels SM, Dirksen CD. Anxiety and quality of life: clinically anxious children with and without autism spectrum disorders compared. J Clin Child Adolesc Psychol 2012;41:731–8. https://doi.org/10.1080/15374416.2012.698725 doi: 10.1080/15374416.2012.698725. [DOI] [PubMed]
  199. Van Steensel FJA, Dirksen CD, Bogels SM. Cost-effectiveness of cognitive-behavioral therapy versus treatment as usual for anxiety disorders in children with autism spectrum disorder. Res Autism Spectr Disord 2014;8:127–37. https://doi.org/10.1016/j.rasd.2013.11.001 doi: 10.1016/j.rasd.2013.11.001. [DOI]
  200. Varni JW, Handen BL, Corey-Lisle PK, Guo Z, Manos G, Ammerman DK, et al. Effect of aripiprazole 2 to 15 mg/d on health-related quality of life in the treatment of irritability associated with autistic disorder in children: a post hoc analysis of two controlled trials. Clin Ther 2012;34:980–92. https://doi.org/10.1016/j.clinthera.2012.02.023 doi: 10.1016/j.clinthera.2012.02.023. [DOI] [PubMed]
  201. Viecili MA, Weiss JA. Reliability and validity of the Pediatric Quality of Life Inventory with individuals with intellectual and developmental disabilities. Am J Intellect Dev Disabil 2015;120:289–301. https://doi.org/10.1352/1944-7558-120.4.289 doi: 10.1352/1944-7558-120.4.289. [DOI] [PubMed]
  202. Bishop-Fitzpatrick L, Smith DaWalt L, Greenberg JS, Mailick MR. Participation in recreational activities buffers the impact of perceived stress on quality of life in adults with autism spectrum disorder. Autism Res 2017;10:973–82. https://doi.org/10.1002/aur.1753 doi: 10.1002/aur.1753. [DOI] [PMC free article] [PubMed]
  203. Helles A, Gillberg IC, Gillberg C, Billstedt E. Asperger syndrome in males over two decades: quality of life in relation to diagnostic stability and psychiatric comorbidity. Autism 2017;21:458–69. https://doi.org/10.1177/1362361316650090 doi: 10.1177/1362361316650090. [DOI] [PubMed]
  204. Hong J, Bishop-Fitzpatrick L, Smith LE, Greenberg JS, Mailick MR. Factors associated with subjective quality of life of adults with autism spectrum disorder: self-report versus maternal reports. J Autism Dev Disord 2016;46:1368–78. https://doi.org/10.1007/s10803-015-2678-0 doi: 10.1007/s10803-015-2678-0. [DOI] [PMC free article] [PubMed]
  205. Jariwala-Parikh KM. Quality of life and healthcare utilization and costs among adults with autism. Diss Abstr Int 2016;76.
  206. Jennes-Coussens M, Magill-Evans J, Koning C. The quality of life of young men with Asperger syndrome: a brief report. Autism 2006;10:403–14. doi: 10.1177/1362361306064432. [DOI] [PubMed]
  207. Kamio Y, Inada N, Koyama T. A nationwide survey on quality of life and associated factors of adults with high-functioning autism spectrum disorders. Autism 2013;17:15–26. https://doi.org/10.1177/1362361312436848 doi: 10.1177/1362361312436848. [DOI] [PubMed]
  208. Kamp-Becker I, Schröder J, Remschmidt H, Bachmann CJ. Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder. Psychosoc Med 2010;7:Doc03. https://doi.org/10.3205/psm000065 doi: 10.3205/psm000065. [DOI] [PMC free article] [PubMed]
  209. Khanna R, Jariwala K, West-Strum D. Validity and reliability of the Medical Outcomes Study Short-Form Health Survey version 2 (SF-12v2) among adults with autism. Res Dev Disabil 2015;43–44:51–60. https://doi.org/10.1016/j.ridd.2015.06.006 doi: 10.1016/j.ridd.2015.06.006. [DOI] [PubMed]
  210. Moss P, Mandy W, Howlin P. Child and adult factors related to quality of life in adults with autism. J Autism Dev Disord 2017;47:1830–7. https://doi.org/10.1007/s10803-017-3105-5 doi: 10.1007/s10803-017-3105-5. [DOI] [PMC free article] [PubMed]
  211. Ahmad MM, Dardas LA. The hidden patients: fathers of children with autism spectrum disorder. J Intellect Dev Disabil 2015;40:368–75. https://doi.org/10.3109/13668250.2015.1064879 doi: 10.3109/13668250.2015.1064879. [DOI]
  212. Dardas LA, Ahmad MM. Quality of life among parents of children with autistic disorder: a sample from the Arab world. Res Dev Disabil 2014;35:278–87. https://doi.org/10.1016/j.ridd.2013.10.029 doi: 10.1016/j.ridd.2013.10.029. [DOI] [PubMed]
  213. Kousha M, Attar HA, Shoar Z. Anxiety, depression, and quality of life in Iranian mothers of children with autism spectrum disorder. J Child Health Care 2016;20:405–14. https://doi.org/10.1177/1367493515598644 doi: 10.1177/1367493515598644. [DOI] [PubMed]
  214. Amirian H, Solimani S, Maleki F, Ghasemi SR, Reshadat S, Gilan NR. A study on health-related quality of life, depression, and associated factors among parents of children with autism in Kermanshah, Iran. Iran J Psychiatry Behav Sci 2017;11. https://doi.org/10.5812/ijpbs.7832 doi: 10.5812/ijpbs.7832. [DOI]
  215. Aral A, Usta MB, Karaosman T. Behavioral problems in pre-school and school-aged autism spectrum disorder children; associations with parent functional and psychological health: preliminary study. Klinik Psikofarmakoloji Bulteni 2015;25:S104.
  216. Benjak T, Mavrinac GV, Simetin IP, Kolaric B. A comparative study on self-perceived health and quality of life of parents of children with autism spectrum disorders and parents of non disabled children in Croatia. Dev Med Child Neurol 2011;53:7–8. https://doi.org/10.1111/j.1469-8749.2011.04011.x doi: 10.1111/j.1469-8749.2011.04011.x. [DOI]
  217. Forouzanfar S, Babakhani N, Sodagar S. Health related quality of life among mothers of children with autism spectrum disorder and its predictors. Indian J Public Health Res Dev 2016;7:209–14. https://doi.org/10.5958/0976-5506.2016.00095.4 doi: 10.5958/0976-5506.2016.00095.4. [DOI]
  218. Johnson N, Frenn M, Feetham S, Simpson P. Autism spectrum disorder: parenting stress, family functioning and health-related quality of life. Fam Syst Health 2011;29:232–52. https://doi.org/10.1037/a0025341 doi: 10.1037/a0025341. [DOI] [PubMed]
  219. Johnson NL. Understanding relationships in health related quality of life of parents of children with autism spectrum disorder. Diss Abstr Int 2009;70:7493.
  220. Ji B, Zhao I, Turner C, Sun M, Yi R, Tang S. Predictors of health-related quality of life in Chinese caregivers of children with autism spectrum disorders: a cross-sectional study. Arch Psychiatr Nurs 2014;28:327–32. https://doi.org/10.1016/j.apnu.2014.06.001 doi: 10.1016/j.apnu.2014.06.001. [DOI] [PubMed]
  221. Ji B, Sun M, Yi R, Tang S. Multidisciplinary parent education for caregivers of children with autism spectrum disorders. Arch Psychiatr Nurs 2014;28:319–26. https://doi.org/10.1016/j.apnu.2014.06.003 doi: 10.1016/j.apnu.2014.06.003. [DOI] [PubMed]
  222. Khanna R, Madhavan SS, Smith MJ, Patrick JH, Tworek C, Becker-Cottrill B. Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. J Autism Dev Disord 2011;41:1214–27. https://doi.org/10.1007/s10803-010-1140-6 doi: 10.1007/s10803-010-1140-6. [DOI] [PubMed]
  223. Kheir N, Ghoneim O, Sandridge AL, Al-Ismail M, Hayder S, Al-Rawi F. Quality of life of caregivers of children with autism in Qatar. Autism 2012;16:293–8. https://doi.org/10.1177/1362361311433648 doi: 10.1177/1362361311433648. [DOI] [PubMed]
  224. Lee GK, Lopata C, Volker MA, Thomeer ML, Nida RE, Toomey JA, et al. Health-related quality of life of parents of children with high-functioning autism spectrum disorders. Focus Autism Other Dev Disabil 2009;24:227–39. https://doi.org/10.1177/1088357609347371 doi: 10.1177/1088357609347371. [DOI]
  225. Yamada A, Kato M, Suzuki M, Suzuki M, Watanabe N, Akechi T, Furukawa TA. Quality of life of parents raising children with pervasive developmental disorders. BMC Psychiatry 2012;12:119. https://doi.org/10.1186/1471-244X-12-119 doi: 10.1186/1471-244X-12-119. [DOI] [PMC free article] [PubMed]
  226. Khanna R, Jariwala K, Bentley JP. Health utility assessment using EQ-5D among caregivers of children with autism. Value Health 2013;16:778–88. https://doi.org/10.1016/j.jval.2013.04.007 doi: 10.1016/j.jval.2013.04.007. [DOI] [PubMed]
  227. Allik H, Larsson JO, Smedje H. Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health Qual Life Outcomes 2006;4:1. https://doi.org/10.1186/1477-7525-4-1 doi: 10.1186/1477-7525-4-1. [DOI] [PMC free article] [PubMed]
  228. Steinhausen HC, Mohr Jensen C, Lauritsen MB. A systematic review and meta-analysis of the long-term overall outcome of autism spectrum disorders in adolescence and adulthood. Acta Psychiatr Scand 2016;133:445–52. https://doi.org/10.1111/acps.12559 doi: 10.1111/acps.12559. [DOI] [PubMed]
  229. Howlin P, Moss P, Savage S, Rutter M. Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children. J Am Acad Child Adolesc Psychiatry 2013;52:572–81.e1. https://doi.org/10.1016/j.jaac.2013.02.017 doi: 10.1016/j.jaac.2013.02.017. [DOI] [PubMed]
  230. Gillespie-Lynch K, Sepeta L, Wang Y, Marshall S, Gomez L, Sigman M, Hutman T. Early childhood predictors of the social competence of adults with autism. J Autism Dev Disord 2012;42:161–74. https://doi.org/10.1007/s10803-011-1222-0 doi: 10.1007/s10803-011-1222-0. [DOI] [PMC free article] [PubMed]
  231. Gray K, Keating C, Taffe J, Brereton A, Einfeld S, Tonge B. Trajectory of behavior and emotional problems in autism. Am J Intellect Dev Disabil 2012;117:121–33. https://doi.org/10.1352/1944-7588-117-2.121 doi: 10.1352/1944-7588-117-2.121. [DOI] [PubMed]
  232. Billstedt E, Gillberg IC, Gillberg C, Gillberg C. Autism after adolescence: population-based 13- to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. J Autism Dev Disord 2005;35:351–60. https://doi.org/10.1007/s10803-005-3302-5 doi: 10.1007/s10803-005-3302-5. [DOI] [PubMed]
  233. Billstedt E, Gillberg IC, Gillberg C. Autism after adolescence: population-based 13- to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. J Autism Dev Disord 2007;37:1822. https://doi.org/10.1007/s10803-006-0082-5 doi: 10.1007/s10803-006-0082-5. [DOI] [PubMed]
  234. Billstedt E, Gillberg IC, Gillberg C. Aspects of quality of life in adults diagnosed with autism in childhood: a population-based study. Autism 2011;15:7–20. https://doi.org/10.1177/1362361309346066 doi: 10.1177/1362361309346066. [DOI] [PubMed]
  235. Szatmari P, Bryson S, Duku E, Vaccarella L, Zwaigenbaum L, Bennett T, Boyle MH. Similar developmental trajectories in autism and Asperger syndrome: from early childhood to adolescence. J Child Psychol Psychiatry 2009;50:1459–67. https://doi.org/10.1111/j.1469-7610.2009.02123.x doi: 10.1111/j.1469-7610.2009.02123.x. [DOI] [PubMed]
  236. Eaves LC, Ho HH. Young adult outcome of autism spectrum disorders. J Autism Dev Disord 2008;38:739–47. https://doi.org/10.1007/s10803-007-0441-x doi: 10.1007/s10803-007-0441-x. [DOI] [PubMed]
  237. McGovern CW, Sigman M. Continuity and change from early childhood to adolescence in autism. J Child Psychol Psychiatry 2005;46:401–8. https://doi.org/10.1111/j.1469-7610.2004.00361.x doi: 10.1111/j.1469-7610.2004.00361.x. [DOI] [PubMed]
  238. Howlin P, Mawhood L, Rutter M. Autism and developmental receptive language disorder – a follow-up comparison in early adult life. II: Social, behavioural, and psychiatric outcomes. J Child Psychol Psychiatry 2000;41:561–78. https://doi.org/10.1111/1469-7610.00643 doi: 10.1111/1469-7610.00643. [DOI] [PubMed]
  239. Bishop SL, Farmer C, Thurm A. Measurement of nonverbal IQ in autism spectrum disorder: scores in young adulthood compared to early childhood. J Autism Dev Disord 2015;45:966–74. https://doi.org/10.1007/s10803-014-2250-3 doi: 10.1007/s10803-014-2250-3. [DOI] [PMC free article] [PubMed]
  240. Anderson DK, Liang JW, Lord C. Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. J Child Psychol Psychiatry 2014;55:485–94. https://doi.org/10.1111/jcpp.12178 doi: 10.1111/jcpp.12178. [DOI] [PMC free article] [PubMed]
  241. Marriage S, Wolverton A, Marriage K. Autism spectrum disorder grown up: a chart review of adult functioning. J Can Acad Child Adolesc Psychiatry 2009;18:322–8. [PMC free article] [PubMed]
  242. Gray KM, Keating CM, Taffe JR, Brereton AV, Einfeld SL, Reardon TC, Tonge BJ. Adult outcomes in autism: community inclusion and living skills. J Autism Dev Disord 2014;44:3006–15. https://doi.org/10.1007/s10803-014-2159-x doi: 10.1007/s10803-014-2159-x. [DOI] [PubMed]
  243. Ballaban-Gil K, Rapin I, Tuchman R, Shinnar S. Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder. Pediatr Neurol 1996;15:217–23. https://doi.org/10.1016/S0887-8994(96)00219-6 doi: 10.1016/S0887-8994(96)00219-6. [DOI] [PubMed]
  244. Bebbington A, Beecham J. Social services support and expenditure for children with autism. Autism 2007;11:43–61. https://doi.org/10.1177/1362361307070911 doi: 10.1177/1362361307070911. [DOI] [PubMed]
  245. Byford S, Cary M, Barrett B, Aldred CR, Charman T, Howlin P, et al. Cost-effectiveness analysis of a communication-focused therapy for pre-school children with autism: results from a randomised controlled trial. BMC Psychiatry 2015;15:316. https://doi.org/10.1186/s12888-015-0700-x doi: 10.1186/s12888-015-0700-x. [DOI] [PMC free article] [PubMed]
  246. Järbrink K, Knapp M. The economic impact of autism in Britain. Autism 2001;5:7–22. https://doi.org/10.1177/1362361301005001002 doi: 10.1177/1362361301005001002. [DOI] [PubMed]
  247. Järbrink K, Fombonne E, Knapp M. Measuring the parental, service and cost impacts of children with autistic spectrum disorder: a pilot study. J Autism Dev Disord 2003;33:395–402. https://doi.org/10.1023/a:1025058711465 doi: 10.1023/a:1025058711465. [DOI] [PubMed]
  248. Mavranezouli I, Megnin-Viggars O, Cheema N, Howlin P, Baron-Cohen S, Pilling S. The cost-effectiveness of supported employment for adults with autism in the United Kingdom. Autism 2014;18:975–84. https://doi.org/10.1177/1362361313505720 doi: 10.1177/1362361313505720. [DOI] [PMC free article] [PubMed]
  249. McGill P, Poynter J. High cost residential placements for adults with intellectual disabilities. J Appl Res Intellect Disabil 2012;25:584–7. https://doi.org/10.1111/j.1468-3148.2012.00689.x doi: 10.1111/j.1468-3148.2012.00689.x. [DOI] [PubMed]
  250. Preece D, Jordan R. Short breaks services for children with autistic spectrum disorders: factors associated with service use and non-use. J Autism Dev Disord 2007;37:374–85. https://doi.org/10.1007/s10803-006-0174-2 doi: 10.1007/s10803-006-0174-2. [DOI] [PubMed]
  251. Russell G, Ford T, Steer C, Golding J. Identification of children with the same level of impairment as children on the autistic spectrum, and analysis of their service use. J Child Psychol Psychiatry 2010;51:643–51. https://doi.org/10.1111/j.1469-7610.2010.02233.x doi: 10.1111/j.1469-7610.2010.02233.x. [DOI] [PubMed]
  252. Wright B, Marshall D, Adamson J, Ainsworth H, Ali S, Allgar V, et al. Social Stories™ to alleviate challenging behaviour and social difficulties exhibited by children with autism spectrum disorder in mainstream schools: design of a manualised training toolkit and feasibility study for a cluster randomised controlled trial with nested qualitative and cost-effectiveness components. Health Technol Assess 2016;20(6). https://doi.org/10.3310/hta20060 doi: 10.3310/hta20060. [DOI] [PMC free article] [PubMed]
  253. Yuan JX, McGowan M, Hadjikoumi I, Pant B. Do children with neurological disabilities use more inpatient resources: an observational study. Emerg Themes Epidemiol 2017;14:5. https://doi.org/10.1186/s12982-017-0059-1 doi: 10.1186/s12982-017-0059-1. [DOI] [PMC free article] [PubMed]
  254. MacDonald RD, Parry-Cruwys, Dupere S, Ahearn W. Assessing progress and outcome of early intensive behavioral intervention for toddlers with autism. Res Dev Disabil 2014;35:3632–44. https://doi.org/10.1016/j.ridd.2014.08.036 doi: 10.1016/j.ridd.2014.08.036. [DOI] [PubMed]
  255. Barbeau EB, Soulières I, Dawson M, Zeffiro TA, Mottron L. The level and nature of autistic intelligence III: inspection time. J Abnorm Psychol 2013;122:295–301. https://doi.org/10.1037/a0029984 doi: 10.1037/a0029984. [DOI] [PubMed]

RESOURCES