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Publication - Research publication

The microsegmentation of the autism spectrum: research project

Published: 26 Mar 2018

Economic research on autism and implications for Scotland, including how the economic cost of autism can inform strategy and planning.

357 page PDF

4.7 MB

357 page PDF

4.7 MB

Contents
The microsegmentation of the autism spectrum: research project
Appendices

357 page PDF

4.7 MB

Appendices

Appendix A.1 Papers removed at Stage 4 of prevalence study (57 papers)

Reason: For basing prevalence rates upon an unrepresentative sample (i.e. one which would be expected to contain a significantly smaller or greater number of ASD cases n = 14).

1. Bakare, M. O., Ebigo, P. O., & Ubochi, V. N. (2012). Prevalence of autism spectrum disorder among Nigerian children with intellectual disability: A stopgap assessment. Journal of Health Care for the Poor and Undeserved, 23(2), 513–518.

2. Barnevik-Olsson, M., Gillberg, C., & Fernell, E. (2010). Prevalence of autism in children of Somali origin living in Stockholm: A brief report of an at-risk population. Developmental Medicine & Child Neurology, 52(12), 1167–1168.

3. Chien, I. C., Lin, C. H., Chou, Y. J., & Chou, P. (2011). Prevalence and incidence of autism spectrum disorders amongst national insurance enrollees in Taiwan from 1996 to 2005. Journal of Child Neurology, 26(7), 830–834.

4. de Bildt, A., Sytema, S., Kraijer D., & Minderaa R. (2005). Prevalence of pervasive developmental disorders in children and adolescents with mental retardation. Journal of Child Psychology and Psychiatry, 46(3), 275–86.

5. Juneja, M., Mukherjee, S. B., & Sharma, S. (2004). A descriptive hospital based study of children with autism. Indian Pediatrics, 42(5), 453–458.

6. Kamer, A., Zohar, A. H., Youngman, R., Diamond, G. W., Inbar, D., & Senecky, Y. (2004). A prevalence estimate of pervasive developmental disorder among immigrants to Israel and Israeli natives. Social Psychiatry & Psychiatric Epidemiology, 39(2), 141–145.

7. Kawamura, Y., Takahashi, O., & Ishii, T. (2008). Reevaluating the incidence of pervasive developmental disorders: impact of elevated rates of detection through implementation of an integrated system of screening in Toyota, Japan. Psychiatry and Clinical Neurosciences, 62 (2), 152-159.

8. Kinney, D. K., Miller, A. M., Crowley, D., Huang, E., & Gerber, E. (2008). Autism prevalence following prenatal exposure to hurricanes and tropical storms in Louisiana. Journal of Autism and Developmental Disorders, 38(3), 48–488.

9. Lai, D. C., Tseng, Y. C., Hou, Y. M., & Guo, H. R. (2012). Gender and geographic differences in the prevalence of autism spectrum disorders in children: Analysis of data from the national disability registry of Taiwan. Research in Developmental Disabilities, 33(3), 909–915.

10. Mandell, D. S., Lawer, L.J., Branch, K., Brodkin, E. S., Healey, K., Witalec, R., … Gur, R. E. (2012). Prevalence and correlates of autism in a state psychiatric hospital. Autism, 16(6), 557–567.

11. Pedersen, A., Pettygrove, S., Mancilla, K., Gotschall, K., Kessler, D. B., Grebe, T. A., & Cunniff, C. (2012). Prevalence of autism spectrum disorders in Hispanic and non-Hispanic White children. Pediatrics, 129(3), e629–e635.

12. Saemundsen, E., Juliusson, H., Hjaltested, S., Gunnarsdottir, T., Halldorsdottir, T., Hriedarsson, S., & Magnusson, P. (2010). Prevalence of autism in an urban population of adults with severe intellectual disabilities – A preliminary study. Journal of Intellectual Disability Research, 54(8), 727–735.

13. White, S. W., Ollendick, T. H., & Bray, B. C. (2011). College students on the autism spectrum: Prevalence and associated problems. Autism, 15(6), 683–701.

14. Worley, J. A., Sipes, M., & Kozlowski, A. M. (2011). Prevalence of autism spectrum disorders in toddlers receiving early intervention services. Research in Autism Spectrum Disorders, 5(1), 920–925.

Reason: For providing too little information about prevalence calculations. All three studies mentioned below were incidence studies which presented figures relating to prevalence estimates over time, but not in relation to specific years associated with particular populations/samples (n =3).

15. Gal, G., Abiri, L., Reichenberg, A., Gabis, L., & Gross, R. (2012). Time trends in reported autism spectrum disorders in Israel, 1986-2005. Journal of Autism and Developmental Disorders, 42(3), 428–431.

16. Gal, G., & Gross, R. (2009). Time trends and autism. The Israel Medical Association Journal, 11(9), 577.

17. Maenner, M. J., & Durkin, M. S. (2010). Trends in the prevalence of autism on the basis of special education data. Pediatrics, 12(5), e1018–e1025.

Reason: For not providing any information directly relevant to our investigation (n =3).

18. Centers for Disease Control and Prevention. (2007c). Evaluation of a methodology for a collaborative multiple source surveillance network for autism spectrum disorders – autism and developmental disabilities monitoring network, 14 sites, United States, 2002. (Morbidity and Mortality Weekly Report.) Surveillance Summaries, 56(1), 29-40.

19. Simonoff, E., Pickles, A., Charman, T., Chandler, S. & Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population—derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47(8), 921–929.

20. Skellern, C., McDowell, M., & Schluter, P. (2005). Diagnosis of autistic spectrum disorders in Queensland: variations in practice. Journal of Paediatric and Child Health, 41(8), 413–18.

Reason: For providing no primary prevalence data (commentaries or prevalence reviews) (n =24).

21. Bakare, M. O., & Munir, K. M. (2011). Autism spectrum disorders ( ASD) in Africa: A perspective. African Journal of Psychiatry, 14(3), 208–210.

22. Charles, J., Carpenter, L., Jenner, W., & Nicholas, J. S. (2008). Recent advances in autism spectrum disorders. International Journal of Psychiatry in Medicine, 38(2), 133–140.

23. Duchan, E., & Patel, D. R. (2012). Epidemiology of autism spectrum disorders. Pediatric Clinics of North America, 59(1), 27–43, ix-x.

24. Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcin, C., … Fombonne, E. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5(3), 160–179.

25. Fombonne, E. (2003a). The prevalence of autism. Journal of the American Medical Association, 289(1), 87–89.

26. Fombonne, E. (2003b). Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders, 33(4), 365–382.

27. Fombonne, E. (2005). The changing epidemiology of autism. Journal of Applied Research in Intellectual Disabilities, 18(4), 281–294.

28. Fombonne, E. (2008). Is autism getting commoner? The British Journal of Psychiatry, 193(1), 159.

29. Fombonne, E. (2009). Epidemiology of pervasive developmental disorders. Pediatric Research, 65(6), 591–598.

30. Fombonne, E., & Tidmarsh, L. (2003). Epidemiologic data on Asperger disorder. Child and Adolescent Psychiatric Clinics of North America, 12(1), 15–21.

31. Fombonne, E., Zakarian, R., Bennett, A., Meng, L., & McLean-Heywood, D. (2006). Pervasive developmental disorders in Montreal, Quebec, Canada: Prevalence and links with immunizations. Pediatrics, 118(1), e139–e150.

32. Fraser, R., Angus, B., Cotton, S., Gentle, E., Allott, K., & Thompson, A. (2011). Prevalence of autism spectrum conditions in a youth mental health service. Australian and New Zealand Journal of Psychiatry, 45(5), 426.

33. Matron, J. L., & Kozlowski, A. M. (2011). The increasing prevalence of autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 418–425.

34. Merrick, J., Kandel, I., & Morad, M. (2004). Trends in Autism. International Journal of Adolescent Medicine and Health, 16(1), 75–78.

35. Prior, M. (2003). Is there an increase in the prevalence of autism spectrum disorders? Journal of Paediatrics and Child Health, 39(2), 81–82.

36. Ray-Mihm, R. (2008). Autism: part I. Deficits, prevalence, symptoms, and environmental factors. Journal of Continuing Education in Nursing, 39(2), 55–56.

37. Senecky, Y., Chodick, G., Diamond, G., Lobel, D., Drachman, R., & Inbar, D. (2009). Time trends in reported austism spectrum disorders in Israel, 1972–2004. The Israel Medical Association Journal, 11(1), 30–33.

38. Sun, X., & Allison, C. (2010). A review of the prevalence of autism spectrum disorder in Asia. Research in Autism Spectrum Disorders, 4(2), 156–167.

39. Tidmarsh, L., & Volkmar, F. R. (2003). Diagnosis and epidemiology of autism spectrum disorders. The Canadian Journal of Psychiatry, 48(8), 517–525.

40. Waterhouse, L. (2008). Autism overflows: Increasing prevalence and proliferating theories. Neuropsychology Review, 18(4), 273–286.

41. Wazana, A., Bresnahan, M., & Kline, J. (2007). The autism epidemic: Fact or artifact? Journal of the American Academy of Child & Adolescent Psychiatry, 46(6), 721–730.

42. Williams, K., Mellis, C., & Peat, J. K. (2005). Incidence and prevalence of autism. Advances in Speech Language Pathology, 7(1), 31–40.

43. Williams, J. G., Higgins, J. P., & Brayne, C. E. (2006). Systematic review of prevalence studies of autism spectrum disorders. Archives of Disease in Childhood, 91(1), 8–15.

44. Williams, K., MacDermott, S., Greta, R., Glasson, E. J., & Wray, J. A. (2008). The prevalence of autism in Australia. Can it be established from existing data? Journal of Paediatrics and Child Health, 44(9), 504–510.

45. Zaroff, C. M., & Uhm, S. Y. (2012). Prevalence of autism spectrum disorders and influence of country of measurement and ethnicity. Social Psychiatry and Psychiatric Epidemiology, 47(3), 395–398.

Reason: For basing prevalence rates upon data collected from record reviews or poor quality surveillance systems (i.e. those which provided a lack of detail about the individuals diagnosed and the diagnostic procedure which resulted in a confirmed diagnosis) (n = 12).

46. Barbaresi, W. J., Katusic, S. K., Colligan, R. C., Weaver, A. L., & Jacobsen, S. J. (2005). The incidence of autism in Olmsted County, Minnesota, 1976–1997: Results from a population-based study. Archives of Pediatrics and Adolescent Medicine, 159(1), 37–44.

47. Centers for Disease Control and Prevention. (2007a). Prevalence of autism spectrum disorders – autism and development disabilities monitoring network, six sites, United States, 2000. (Morbidity and Mortality Weekly Report.) Surveillance Summaries, 56(1), 1–11.

48. Centers for Disease Control and Prevention. (2007b). Prevalence of autism spectrum disorders--autism and developmental disabilities monitoring network, 14 sites, United States, 2002. (Morbidity and Mortality Weekly Report.) Surveillance Summaries, 56( SS01), 12–28.

49. Centers for Disease Control and Prevention. (2009). Prevalence of autism spectrum disorders—Autism and Developmental Disabilities Monitoring Network, United States, 2006. (Morbidity and Mortality Weekly Report.) Surveillance Summaries, 58( SS10), 1–20.

50. Centers for Disease Control and Prevention. (2012). Prevalence of autism spectrum disorders autism and development disabilities monitoring network, 14 sites, United States, 2008. (Morbidity and Mortality Weekly Report.) Surveillance Summaries, 61( SS03), 1–19.

51. Guo, L., & Li, Y. Y. (2011). Review and forecast on research on child autism in China. Chinese Mental Health Journal, 25, 460 - 463.

52. Gurney, J. G., Fritz, M.S., Ness, K. K, Sievers, P., & Newschaffer, C.J. (2003). Analysis of prevalence trends of autism spectrum disorder in Minnesota. Archives of Pediatrics & Adolescent Medicine, 157(7), 622–627.

53. Kogan, M. D., Blumberg, S. J., Schieve, L. A., Boyle, C. A. Perrin, J. M., Ghandour, R. M., … van Dyck, P. C (2009). Prevalence of parent reported diagnosis of autism spectrum disorders in children in the US, 2007. Pediatrics, 124(5), 1395–1403.

54. Lopez, M., Schulz, E. G., Baroud, T., Hudson, A., & Wilson, M. (2012). The Arkansas Autism Developmental Disabilities Monitoring ( AR ADDM) project: State-wide autism surveillance in a rural state. Journal of the Arkansas Medical Society, 108(10), 222–4.

55. Nicholas, J. S., Carpenter, L. A., King, L. B., Jenner, W. & Charles, J. M. (2009). Autism spectrum disorders in preschool-aged children: prevalence and comparison to school aged population. Annals of epidemiology, 19(11), 808–814.

56. Schechter R., & Grether J. (2008) Continuing increases in autism reported to California's developmental services system. Archives of General Psychiatry, 65(1), 19–24.

57. Yeargin-Allsopp, M. (2008). The prevalence and characteristics of autism spectrum disorders in the ALSPAC cohort. Developmental Medicine & Child Neurology, 50(9), 646.

Appendix A.2 Stage 5 Data extraction and coding: ASD prevalence data extraction form and guidelines for scoring

1 Study number: Reference:
2 Diagnosis (specify the diagnosis/diagnoses given to the sample)

3 Diagnostic criteria used

4 Other diagnostic data


5 Sample characteristics: age/number/gender/other breakdown

6 Geographical area
7 Relevant date/s
8 Type of prevalence study
9 Methodology
10 Prevalence figures
11 Other relevant information

Data Extraction Form Scoring (applied to Question 2, 3, 4, 5 and 9)

2 Diagnosis

4 Autism/Asperger’s together or separately with or without atypical autism/ PDD-NOS
3 ASD with or without atypical autism/ PDD-NOS
2 PDD
1 Not stated (study excluded)

3 Diagnostic criteria used

5 ICD-10 or DSM-IV for all or almost all cases
4 Mixed ICD-10 and DSM-IV
3 Earlier ICD or DSM
2 High quality checklists/ratings used, based on standard criteria (eg DSM-based)
1 Lower quality checklists/ratings, or criteria not used/not stated (study excluded)

4 Other diagnostic criteria

5 Clinical diagnosis done for study by specialist team
4 Clinical diagnosis previously done by specialist team
3 Clinical diagnosis done for study by appropriate diagnostician (psychologist, specialist medic), or high quality checklist diagnosis
2 Clinical diagnosis previously completed by appropriate diagnostician (psychologist, specialist medic), or high quality checklist diagnosis
1 Other diagnosis arrangements or insufficient information, or patient/carer self-report (study excluded)

5 Sample characteristics

4 10,000+ at point of screening
3 5,000-9,999 at point of screening
2 1,000-4,999 at point of screening
1 <1,000 at point of screening, or insufficient data to generate raw numbers (study excluded)

9 Methodology

2 The methodology of the study is appropriate
1 The methodology of the study is inappropriate - examples: inadequate statistical analysis; inadequate procedures to identify the relevant population; study based on referred cases only; possible ASD cases were inappropriately excluded (study excluded)

Appendix A.3 Papers removed at Stage 5 of prevalence study (27 papers) and final set included

Removed at Stage 5 (27 papers)
The following 27 papers were removed at this stage on the basis of meeting one or more of the exclusion criteria shown in italics on the data extraction form, namely: diagnosis not stated, recognised diagnostic criteria not used or not stated, inadequate diagnostic procedures, inadequate sample, or inappropriate methodology.

Reason: Lack of diagnostic information in terms of either the measures or the professionals involved in diagnosis (n = 4).

1. Aguilera, A., Moreno, F. J., & Rodriguez, I. R. (2007). Prevalence estimates of autism spectrum disorder in the school population of Seville, Spain. British Journal of Developmental Disabilities, 53(105), 97–109.

2. Al-Farsi, Y.M. Al-Sharbati, M.M., Al-Farsi, O.A., Al-Shafaee, M.S., & Brooks, D.R. (2011). Brief report: Prevalence of autistic spectrum disorders in the Sultanate of Oman. Journal of Autism and Developmental Disorders, 41 (6), 821-825.

3. Latif, A. H., & Williams, W. R. (2007). Diagnostic trends in autistic spectrum disorders in the South Wales valleys. Autism, 11(6), 479-487.

4. van Bolkom, I. D. C., Bresnahan, M., Vogtlander, M. F., van Hoeken, D., Minderaa, R. B., Susser, E., & Hoek, H. W. (2009). Prevalence of treated autism spectrum disorders in Aruba. Journal of Neurodevelopmental Disorders, 1(3), 197–204.

Reason: Record reviews of an insufficient quality (i.e. those which relied on records providing insufficient detail about the original diagnoses or which could not say with any confidence that they had identified at least the majority of ASD cases in the population targeted) (n = 16).

5. Coo, H., Ouellette-Kuntz, H., Lloyd, J.E., Kasmara, L., & Holden, J. J. (2008). Trends in autism prevalence: Diagnostic substitution revisited. Journal of Autism and Developmental Disorders, 38(6), 1036–1046.

6. Davidovitch, M., Hemo, B., Manning-Courtney, P., & Fombonne, E. (2013) Prevalence and Incidence of Autism Spectrum Disorder in an Israeli Population Journal of Autism and Developmental Disorders, 43(4), 785–793.

7. Gillberg, C., Cederlund, M., Lamberg, K., & Zeijlon, L. (2006). Brief report: ’The autism epidemic’. The registered prevalence of autism in a Swedish urban area. Journal of Autism and Developmental Disorders, 36(3), 429–35.

8. Harrison, M. J., O’Hare, A. E., Campbell, H., Adamson, A., & McNeillage, J. (2006). Prevalence of autistic spectrum disorders in Lothian, Scotland: An estimate using the “capture–recapture” technique. Archives of Disease in Children, 91(1), 16-19.

9. Kielinen, M. (2005). Autism in Northern Finland: A prevalence, follow-up and descriptive study of children and adolescents with autistic disorder. Oulu: Oulu University Press.

10. Lauritson, M. B. Pederson, C. B., & Mortensen, P. B. (2004). The incidence and prevalence of pervasive developmental disorders: A Danish population-based study. Psychological Medicine, 34(7), 1339–1346.

11. Lazoff, T., Zhong, L., Piperni, T., & Fombonne, E. (2010). Prevalence of pervasive developmental disorders among children at the English Montreal School Board. Canadian Journal of Psychiatry, 55(11), 715–720.

12. Montiel-Nava, C. C., & Peña, J.A. (2008). Epidemiological findings of pervasive developmental disorders in a Venezuelan study. Autism, 12(2), 191–202.

13. Parner, E. T., Schendel, D. E., & Thorsen, P. (2008). Autism prevalence trends over time in Denmark: Changes in prevalence and age at diagnosis. Archives of Pediatrics & Adolescent Medicine, 162(12), 1150–1156.

14. Parner, E. T., Thorsen, P., Dixon, G., de Klerk, N., & Leonard, H. (2011). A comparison of autism prevalence trends in Denmark and Western Australia. Journal of Autism and Developmental Disorders, 41(12), 1601–1608.

15. Samadi, S. A., Mahmoodizadeh, & A., McConkey, R. (2012). A national study of the prevalence of autism among five-year-old children in Iran. International Journal of Research and Practice, 16(1), 5–14.

16. Williams, E., Thomas, K., Sidebotham, H., & Emond, A. (2008). Prevalence and characteristics of autistic spectrum disorders in the Avon Longitudinal Study of Parents and Children ( ALSPAC) cohort. Developmental Medicine and Child Neurology, 50(9), 672–677.

17. Windham, G. C., Anderson, M. C., Croen, L. A., Smith, K. S., Collins, J., & Grether, J. K. (2011). Birth prevalence of autism spectrum disorders in the San Francisco Bay Area by demographic and ascertainment source characteristics. Journal of Autism and Developmental Disorders, 41(10), 1362–1372.

18. Wong, V. C., & Hui, S. L. (2008). Epidemiological study of autism spectrum disorder in China. Journal of Child Neurology, 23(1), 7–72.

19. Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg, N., & Boyle, C. (2003). Prevalence of autism in a US metropolitan area. Journal of the American Medical Association, 289(1), 49–55.

20. Zeglam, A. M., & Maound, A. J. (2012). Prevalence of autistic spectrum disorders in Tripoli, Libya: The need for more research and planned services. Eastern Mediterranean Health Journal, 18(2), 184–188.

Reason: Study focused on a very young sample (n = 2).

21. Eapen, V., Mabrouk, A. A., Zoubeidi, T., & Yunis, F. (2007). Prevalence of pervasive developmental disorders in preschool children in the UAE. Journal of Tropical Pediatrics, 53(3), 202–205.

22. Honda, H., Shimizu, Y., Imai, M., & Nitto, Y. (2005). Cumulative incidence of childhood autism: A total population study of better accuracy and precision. Developmental Medicine and Child Neurology, 47(1), 10–18.

Reason: Study covered information/a population already covered by another paper in our review (n = 1).

23. Ellefsen, A., Kampmann, H., Billstedt, E., Gillberg, I. C., & Gillberg, C. (2007). Autism in the Faroe Islands: An epidemiological study. Journal of Autism and Developmental Disorders, 37(3), 437–444. (this sample was analysed by Kocovska et al., 2012).

Reason: Methodological issues (n = 4).

24. Kim, Y. S., Leventhal, B. L., Koh, Y. J., Fombonne, E., Laska, E., Lim. E. C., … Grinker, R. R. (2011). Prevalence of autism Spectrum Disorders in a total population sample. American Journal of Psychiatry, 168(6), 904–912.

25. Oliveira, G., Ataíde, A., Marques, C., Miguel, T. S., & Coutinho, A. M., (2007). Epidemiology of autism spectrum disorder in Portugal: prevalence, clinical characterization, and medical conditions. Developmental Medicine and Child Neurology, 49(10), 726–733.

26. Webb, E., Morey, J., Thompsen, W., Butler, C., & Barber, M. (2003). Prevalence of autistic spectrum disorder in children attending mainstream schools in a Welsh education authority. Developmental Medicine and Child Neurology, 45(6), 377–384.

27. Zhang, X., & Ji, C. (2005). Autism and mental retardation of young children in China. Biomedical and Environmental Sciences, 18(5), 334–340.

Included at Stage 5 (final set) (n = 8)

1. Baird, G., Simonoff, E., Pickles, A., Chandler, S., & Loucas, 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.

2. Baron-Cohen, S., Scott, F. J., Allison, C., Williams, J., & Bolton, P. (2009). Prevalence of autism-spectrum conditions: UK school-based population study . The British journal of Psychiatry, 194(6), 500–509.

3. Brugha, T. S., McManus, S., Bankart, J., Scott, F., Pardon, S., Smith, J., … Meltzer, H. (2011). Epidemiology of autism spectrum disorders in adults in the community in England. Archives of General Psychiatry, 68(5), 459–466.

4. Chakrabarti, S. S., & Fombonne, E. (2005). Pervasive developmental disorders in preschool children: Confirmation of high prevalence. The American Journal of Psychiatry, 162(5), 1133–1141.

5. Idring, S., Rai, D., Dal, H., Dalman, C., Sturm, H., Zander, E., … Magnussen, C. (2012). Autism spectrum disorders in the Stockholm Youth Cohort: Design, prevalence and validity. PLoS ONE, 7(7), ArtID e41280.

6. Kočovská, E., Biskupsto, R., Gillberg, C. I., Ellefsen, A., Kampmann, H., Stora, T., … Gillberg, C. (2012). The rising prevalence of autism: A prospective longitudinal study in the Faroe Islands. Journal of Autism and Developmental Disorders, 42(9), 1959–1966.

7. Mattila, M. L., Kielinen, M., Linna, S. L., Jussila, K., & Ebeling, H. (2011). Autism spectrum disorders according to DSM-IV-TR and comparison with DSM-5 draft criteria: An epidemiological study. Journal of the American Academy of Child and Adolescent Psychiatry, 50(6), 583–592.

8. Nygren, G., Cederlund, M., Sandberg, E., Gillstedt, F., Arvidsson, T., Gillberg, I. C., … Gillberg, C. (2011). The prevalence of autism spectrum disorders in toddlers: A population study of 2-year-old Swedish children . Journal of Autism and Developmental Disorders, 42(7), 1491–1497.

Appendix B.1 Papers removed at Stages 3 and 4 of IQ study and final set included

Reason: for basing their analysis on an unrepresentative or skewed sample (n = 4).

1. Amiet, C., Gourfinkel-An, I., Bouzamondo, A., Tordjman, S., Baulac, M., Lechat, P., … Cohen, D. (2012). Epilepsy in autism is associated with intellectual disability and gender: Evidence from a meta-analysis. Biological Psychiatry, 64(7), 577-582.

2. Nyden, A., Niklasson, L., Stahlberg, O., Anckarsater, H., Wentz, E., Rastam, M. & Gillberg, C. (2010). Adults with autism spectrum disorders and ADHD.

3. Schieve, L. A., Baio, J., Rice, C. E., Durkin, M., Kirby, R. S., & Drews-Botsch, C. (2010). Risk for cognitive deficit in a population-based sample of U.S. Children with autism spectrum disorders: Variation by perinatal health factors. Disability & Health Journal, 3(3), 202–212.

4. Icasiano, F., Hewson, P., Machet, P., Cooper, C., & Marshall, A. (2004). Childhood autism spectrum disorder in the Barwon region: A community based study. Journal of Paediatrics and Child Health, 40(12), 696–701.

Reason: for basing analysis on a sample known to be of lower/average/higher intelligence prior to the study (e.g. one study only included what it described as ‘higher functioning’ cases of autism, and some had a sample inclusion criteria which excluded those of a higher/lower IQ regardless of diagnosis) (n = 10)

5. Billstedt, E., Gillberg, C., & Gillberg, C. (2005) Autism after adolescence: Population-based 13 to 22 year: Follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders, 35(3), 351–360

6. Charman, T., Pickles, A., Simonoff, E., Chandler, S., Loucas, T. & Baird, G. (2011). IQ in children with autism spectrum disorders: data from the Special Needs and Autism Project ( SNAP). Psychological Medicine, 41(3), 619–627.

7. Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), 212–229.

8. Kalbfleisch, M. L., & Loughan, A.R. (2012). Impact of IQ discrepancy on executive function in high-functioning autism: Insight into twice exceptionality. Journal or Autism and Developmental Disorder, 42, 390–400.

9. Kielinen, M. (2005). Autism in Northern Finland: A prevalence, follow-up and descriptive study of children and adolescents with autistic disorder. Oulu: Oulu University Press.

10. Mattila, M.L., Kielinen, M., Linna, S.L., Jussila, K., & Ebeling, H. (2011). Autism spectrum disorders according to DSM-IV-TR and comparison with DSM-5 draft criteria: An epidemiological study. Journal of the American Academy of Child and Adolescent Psychiatry, 50(6), 583–592.

11. McPartland, J. C., Reichow, B., & Volkmar, F. R. (2012). Sensitivity and Specificity of Proposed DSM-5 Diagnostic Criteria for Autism Spectrum Disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 51(4), 368–383.

12. Oliver-Rentas, R.E., Kenworth, L., Roberson, R.B., Martin, A. & Wallace, G.L. (2012). WISC-IV Profile in high-hunctioning Autism Spectrum Disorders: Impaired processing speed is associated with increased autism communication symptoms and decreased adaptive communication abilities . Journal of Autism & Developmental Disorders, 42(5), 655–664.

13. Rivito, R. A., Rivito, E. R., Guthrie, D., Rivito, M. J., Hufnagel, D. H., McMahon, W., … Eloff, J. (2011). The Ritvo Autism Asperger Diagnostic Scale-Revised ( RAADS-R): A Scale to assist the diagnosis of autism spectrum disorder in adults: An international validation study. Journal of Autism & Developmental Disorders, 41(8), 1076–1089

14. Starr, E., Szatmari, P., Bryson, S., & Zwaigenbaum, L. (2003). Stability and change among high-functioning children with pervasive developmental disorders: A 2-Year Outcome Study. Journal of Autism and Developmental Disorders, 33(1), 15–22.

Reason: for using non-standardised procedures or measures to determine IQ level (n = 4).

15. Fernell, E., & Gillberg, C. (2010). Autism spectrum disorder diagnoses in Stockholm preschoolers. Research in developmental disabilities, 31(3), 680-685.

16. Fernell, E., Hedvall, A., Norrelgen, F., Erikson, M., Hoglund-Carlsson, L., Barnevik-Olsson, M., ... Gillberg, C. (2011). Developmental profiles in preschool children with autism spectrum disorders referred for intervention. Research in Autism Spectrum Disorders, 5(1), 175–184.

17. Montes, G., & Halterman, J. S. (2006). Characteristics of school-age children with autism. Journal of Developmental and Behavioral Pediatrics, 27(5), 379–385.

18. Perry, A., Flanagan, H.E., Geier, J.D., & Freeman, N.L. (2009). Brief Report: The Vineland Adaptive Behavior Scales in Young Children with Autism Spectrum Disorders at Different Cognitive Levels. Journal of Autism & Developmental Disorders, 39(7), 1066–1078.

Reason: for failing to provide details about the distribution of IQ scores across a sample (in most cases this meant that studies had only reported mean IQ scores for a sample) (n = 10).

19. Coolican, J., Bryson, S. E., & Zwaigenbaum, L. (2008). Brief report: Data on the Stanford-Binet Intelligence Scales (5 th ed.) in children with autism spectrum disorder. Journal of Autism & Developmental Disorders, 38(1), 190–197.

20. de Bruin, E. I., Verheig, F., & Ferdinand, R. F. (2006). WISC-R subtest but no overall VIW-PIQ difference in Dutch children with PDD-NOS. Journal of Abnormal Child Psychology, 34(2), 263–271.

21. Grondhuis, S. N. & Mulick, J.A. (2013). Comparison of the Leiter International Performance Scale-Revised and the Stanford-Binet Intelligence Scales, 5th Edition, in children with autism spectrum disorders. American Journal on Intellectual and Developmental Disabilities, 118(1), 44–54.

22. Jonsdottir, S., Saemundsen, E., Antonsdottir, I. S, Sigurdardottir, S., & Olason, D. (2011). Children diagnosed with autism spectrum disorder before or after the age of 6 years. Research in Autism Spectrum Disorders, 5(1), 175–184.

23. Kanai, C., Tani, M., Hashimoto, R., Yamada, T., Ota, H., Watanbe, H., ... Kato, N. (2012). Cognitive profiles of adults with Asperger’s disorder, high-functioning autism, and pervasive developmental disorder not otherwise specified based on the WAIS-III. Research in Autism Spectrum Disorders, 6(1), 58–64.

24. Koyama, T., Tachimori, H., Osada, H., Takeda, T., & Kurita, H. (2007). Cognitive and symptom profiles in Asperger’s syndrome and high-functioning autism. Psychiatry & Clinical Neuroscience, 61(1), 99–104.

25. Risi, S., Lord, C., Gotham, K., Corsello, C. & Chrysler, C. (2006). Combining information from multiple sources in the diagnosis of autism spectrum disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 45(9), 1094–1103.

26. Spek, A. A. Scholte, E. M., van Berckelaer-Onnes, I. A. (2008). Brief report: The use of WAIS-III in adults with HFA and Asperger syndrome. Journal of Autism & Developmental Disorders, 38 (4), 782–787.

27. Noterdaeme, M., Wriedt, E. & Hohne, C. (2010). Asperger's syndrome and high-functioning autism: Language, motor and cognitive profiles. European Child & Adolescent Psychiatry, 19(6), 475–481.

28. Szatmari, P., Bryson, S., Duku, E., Vaccarella, L., Zwaigenbaum, L., Bennett, T. & Boyle, M.H. (2009). Cognitive profiles of adults with Asperger’s disorder, high-functioning: Similar developmental trajectories in autism and Asperger syndrome: from early childhood to adolescence. Journal of Child Psychology and Psychiatry, 50(12), 1459–1467.

29. Zander, E., & Dahlgren, S. O. (2010). WISC–III index score profiles of 520 Swedish children with pervasive developmental disorders. Psychological Assessment, 22(2), 213–222.

Reason: for basing analysis on a sample of less than 30 (n = 1).

30. McGonigle-Chalmers, M., & McSweeney, M. (2013). The Role of Timing in Testing Nonverbal IQ in Children with ASD. Journal of Autism & Developmental Disorders, 43(1), 80–90.

Reason: for failing to provide information about the methodology in terms of how the sample was recruited, how and when diagnosis had been given or the procedure used to collect IQ data (n = 2).

31. Nicholas, J. S., Carpenter, L. A., King, L. B., Jenner, W., & Charles, J. M. (2009). Autism spectrum disorders in preschool-aged children: Prevalence and comparison to a school-aged population. Annals of Epidemiology, 19(11), 808–814.

32. Sahyoun, C. P., Soulières, I., Belliveau, J.W. Mottron, L., & Moody, M. (2009). Cognitive differences in pictorial reasoning between high-functioning autism and Asperger’s syndrome . Journal of Autism and Developmental Disorders, 39(7), 1014–1023.

Reason: for covering information already described as part of another paper (n = 1).

33. Baird, G., Simonoff, E., Pickles, A., Chandler, S., & Loucas, 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.

Included at Stage 4 (final set)

1. Chakrabarti, S. S., & Fombonne, E. (2005). Pervasive developmental disorders in preschool children: Confirmation of high prevalence. The American Journal of Psychiatry, 162, 1133-1141.

2. Ellefsen, A., Kampmann, H. Billstedt, E., Gillberg, I. C., Gillberg, C. (2007). Autism in the Faroe Islands: An epidemiological study. Journal of Autism and Developmental Disorders, 37(3), 437-444.

3. Keen, D., & Ward, S. (2004). Autistic spectrum disorder: A child population profile. Autism, 8, 39-48.

4. Honda, H., Shimizu, Y., Imai, M., & Nitto, Y. (2005). Cumulative incidence of childhood autism: A total population study of better accuracy and precision. Developmental Medicine and Child Neurology, 47, 10-18.

5. Oliveira, G., Ataíde, A., Marques, C., Miguel, T. S., Coutinho, A. M. (2007). Epidemiology of autism spectrum disorder in Portugal: Prevalence, clinical characterization, and medical conditions. Developmental Medicine and Child Neurology, 49, 726-733.

Appendix B.2 Stage 4 Data extraction and coding: ASD IQ extraction form and guidelines for scoring

1. Study number: 2. Reference: Grade:
3. Geographical area
4. Relevant dates
5. Diagnosis (specify the diagnosis given to the sample)

6. Diagnostic criteria used

7. Other diagnostic information

8. Quality of sample

9. Sample size

10. Method of data collection

11. Assessment measures/ professionals involved

Data Extraction Form Scoring (applied to Question 5, 6, 7, 8, 9, 10 and 11)

5 Diagnosis

3 Autism/Asperger’s together or separately with or without atypical autism/ PDD-NOS
2 ASD with or without atypical autism/ PDD-NOS
1 PDD
0 Not stated (study excluded)

6 Diagnostic criteria used

4 ICD-10 or DSM-IV for all or almost all cases
3 Mixed ICD-10 and DSM-IV
2 Earlier ICD or DSM
1 High quality checklists/ratings used, based on standard criteria (e.g. DSM-based)
0 Lower quality checklists/ratings, or criteria not used/not stated (study excluded)

7 Other diagnostic criteria

4 Clinical diagnosis done for study by specialist team
3 Clinical diagnosis previously done by specialist team
2 Clinical diagnosis done for study by appropriate diagnostician (psychologist, specialist medic), or high quality checklist diagnosis
1 Clinical diagnosis previously completed by appropriate diagnostician (psychologist, specialist medic), or high quality checklist diagnosis
0 Other diagnosis arrangements or insufficient information, or patient/carer self-report (study excluded)

8 Quality of sample

2 Sample clearly defined, with detailed information about demographics, diagnoses and recruitment; not unrepresentative or skewed (e.g. focusing only on those with a specific IQ level or excluding those with a specific co-morbidity)
0 Insufficient data on demographics, diagnoses and recruitment; sample unrepresentative or skewed (study excluded)

9 Sample size

3 >200
2 100 – 200
1 30 -99
0 <30 (already excluded at Stage 3)

10 Method

2 The method of collecting IQ information was appropriate and adequate
0 Data collection inappropriate or inadequate (e.g. missing data, or data likely to be biased) (study excluded)

11 Measured Used

2 A standardised general intelligence test or test of non-verbal reasoning which provides a standard score (e.g. IQ) or equivalent (e.g. T score, percentile). Examples: Stanford-Binet Intelligence Test, Weschler Tests, Lieter International Performance Scale, Cattell Culture Fair Intelligence Test, Mullen Scales of Early Development
1 A standardised general intelligence test or test of non-verbal reasoning which provides scores or categories yielding grouped standard scores or equivalent; OR a standardised verbal reasoning test which yields a standard score or equivalent; OR a developmental scale based on third party information and yielding a standard score or equivalent. Examples: Raven’s Matrices (or Matrices plus Crichton or Mill Hill), Wechsler tests using only Verbal Scale, Vineland Adaptive Behvaiour Scale-Revised
0 Subjective ratings, or assessments which include items not assessing intelligence or developmental level, or tests carried out under age 30 months (e.g. Global Assessment of Functioning, Cattell Infant Intelligence Scale) (study excluded)

Appendix C.1 Duplicate response analysis

A three stage process was used to identify and deal with duplicate responses.

1) Responses were sorted according to their internet protocol ( IP) address, as a means of identifying responses which were returned from the same computers or devices. IP addresses are numerical labels associated with any computer or device which connects to the internet, and while typically each device is associated with a unique IP address, there are cases where a number of devices are associated with the same organization may share a common IP address.

2) In cases where multiple responses were associated with a single IP address, the responses were scrutinised to identify overlap in personal information relating to age, gender, diagnosis, email addresses or post codes.

3) In cases where there was considerable evidence to suggest that two responses related to the same individual (e.g. one or more responses described individuals of the same age, gender, diagnosis, postcode, and with the same service use experiences) then the least detailed response in each case was removed.

Appendix C.2 Co-occurring diagnoses supplementary statistics

Table 11.1 Presence of co-occurring diagnoses (excluding ID) amongst ASD individuals, total sample, n = 950)

Number of Comorbidities Type of ASD diagnosis n (%) Total Sample n (%) (n = 404)
Autism (n = 217) Asperger’s (n = 426) Other ASD (n = 307)
None 155 (71) 263 (62) 221 (72) 639 (67)
At least 1 62 (29) 163 (38) 86 (28) 311 (33)
1 42 (19) 97 (23) 63 (20) 202 (21)
2 16 (7) 49 (12) 15 (5) 80 (8)
3+ 4 (3) 17 (4) 8 (3) 29 (4)

Appendix C.3 School placement alternative statistics

Table 11.2 Schoaol placement amongst individuals with ASD (n = 950) now or in the past

School placement Type of ASD diagnosis n (%) Total Sample n (%) (n = 950)
Autism (n = 217) Asperger’s (n = 426) Other ASD (n – 307)
Mainstream School 146 (67) 412 (97) 255 (83) 812 (85)
Preschool 121 (56) 330 (77) 224 (73) 674 (71)
Primary School 71 (33) 360 (85) 176 (57) 606 (64)
Secondary School 30 (14) 250 (59) 71 (23) 351 (37)
Special Unit in a Mainstream School 105 (48) 129 (30) 117 (38) 351(37)
Preschool 50 (23) 34 (8) 42 (14) 126 (13)
Primary School 71 (33) 68 (16) 84 (27) 222 (23)
Secondary School 26 (12) 65 (15) 33 (11) 123 (13)
Special ASD Day School 34 (16) 6 (1) 24 (8) 64 (7)
Preschool 16 (7) 2 (0) 10 (3) 28 (3)
Primary School 23 (11) 5 (1) 16 (5) 44 (5)
Secondary School 17 (8) 9 (2) 5 (2) 31 (3)
Special Day School (Other) 44 (20) 67 (16) 42 (14) 153 (16)
Preschool 17 (8) 20 (5) 13 (4) 49 (5)
Primary School 25 (12) 47 (11) 27 (9) 99 (10)
Secondary School 23 (11) 35 (8) 19 (6) 77 (8)
ASD Residential School 10 (5) 7 (2) 9 (3) 26 (3)
Preschool 2 (1) 3 (1) 1 (0) 6 (1)
Primary School 7 (3) 0 (0) 5 (2) 11 (1)
Secondary 5 (1) 3 (1) 7 (2) 15 (2)
Special Residential School 16 (7) 9 (2) 7 (2) 32 (3)
Preschool 6 (3) 2 (0) 2 (1) 10 (1)
Primary School 3 (1) 1 (0) 0 (0) 4 (0)
Secondary School 10 (5) 5 (1) 6 (2) 21 (2)
Home Education 13(6) 20 (5) 15 (5) 47 (5)
Preschool 4 (2) 1 (0) 3 (1) 8 (1)
Primary School 6 (3) 8 (2) 9 (3) 23 (2)
Secondary School 4 (2) 11 (3) 5 (2) 20 (2)
Other 13 (6) 12 (3) 9 (4) 34 (4)
Preschool 7 (3) 2 (0) 2 (1) 11 (1)
Primary School 6 (3) 5 (1) 5 (2) 16 (2)
Secondary School 3 (1) 6 (1) 5 (1) 14 (1)

Appendix C.4 Highest level of educational support alternative statistics

Table 11.3 Highest level of educational support amongst individuals with ASD according to type of diagnosis (n = 950)

School type providing highest level of educational support Type of ASD diagnosis n (%) Total Sample n (%) (n = 950)
Autism (n = 217) Asperger’s (n = 426) Other ASD (n = 317)
Mainstream School 53 (24) 238 (56) 140 (46) 431 (45)
Special Unit in a Mainstream School 73 (34) 100 (23) 88 (29) 261 (27)
Special ASD Day School 32 (15) 13 (3) 26 (8) 71 (7)
Other ASD Day School 33 (15) 61 (14) 38 (12) 132 (14)
Residential School ( ASD specific or other) 21 (10) 14 (3) 15 (5) 50 (5)
Home 5 (2) 0 (0) 0 (0) 5 (5)

Table 11.4 Highest level of educational support amongst individuals with ASD according to ID status (n = 649)*

Employment Status Presence and Level of Intellectual Difficulties n (%) Total Sample n (%) (n = 649)
No Intellectual Difficulties (n = 522) ID status
Mild (n =28) Moderate/Severe (n = 99) Total (n = 127)
Mainstream School 280 (54) 7 (7) 15 (15) 22 (17) 302 (47)
Special Unit in a Mainstream School 124 (24) 8 (8) 31 (31) 39 (31) 163 (25)
Special ASD Day School 73 (14) 5 (5) 17 (17) 22 (17) 95 (15)
Other ASD Day School 22 (4) 7 (7) 16 (16) 23 (18) 45 (7)
Residential School ( ASD specific or other) 22 (4) 1 (1) 16 (16) 17 (13) 39 (6)
Total 521 (99) 28 (100) 95 (99) 123 (100) 644 (99)

*Note: Complete data was not available here as 1) details about ID status were provided by 649/950 individuals and 2) As explained in point 7.58 individuals who were identified as receiving their highest level of educational support as ‘at home’ (n = 4) were not included in this analysis.

Appendix C.5 Highest level of educational support logistic regression analysis supplementary statistics

Highest level of educational support (mainstream school) logistic regression

Table 11.5 shows the variables identified as candidate predictors for the model testing the likelihood of individuals receiving their highest level of educational support from a special unit in a mainstream school. All candidate variables listed were found to be significant predictors at a p-level of .25 or less when included in a single independent variables regression models with the dependent variable set to indicate whether an ASD individual ≥ 16 years had received their highest level of educational support from a mainstream school.

Table 11.5 Candidate variables for model testing the likelihood of individuals receiving their highest level of educational support from a mainstream school

Block 1
Demographics
Block 2
Core Diagnoses
Block 3
Co-occurring Conditions
Block 4
Other Outcomes
Block 5
Service use *
Age Gender Autism Diagnosis
Asperger’s/ HFA Diagnosis
ID Status
ADHD
Mood Disorder
Depression
No predictors identified No predictors identified

* Variables in this column indicates service was used times in the last 6 months (with the exception of GH services where the cut-off was ≥ 3 uses in the last 6 months); GH = General Health, MH = Mental Health, ID & PD = Intellectual Disability and Physical Disability

There was some overlap in the candidate variables identified, specifically in the case of (a) ‘autism diagnosis’, ‘Asperger’s/ HFA diagnosis’ and ‘ ID status’ and (b) ‘mood disorders’ and ‘depression’. Inclusion of all of these variables in a logistic regression resulted in multicollinearity, an issue which in turn could influence the reliability of the final results. To avoid this, these variables were compared in terms of their associated Wald statistic, p value, and Nagelkerke R 2, and the strongest predictors, ‘Asperger’s/ HFA diagnosis’ and ‘ ID status’ were included as part of the final modelling exercise, with the other variables were left out of the final models.

Table 11.6 shows the predictor variables which were considered as part of the modelling exercise but were ultimately left out of the final model reported in the main body of the report. Predictors were excluded from the model if they were found to be associated with (a) a relatively small influence on the overall model (as indicated by a low Wald statistic) (b) be highly non-significant or (c) explain < 2% of the variance whether or not in the type of school which provided an individual with their highest level of educational support.

Table 11.6 Candidate variables excluded from logistic regression model focusing on highest level of educational support mainstream

Order in which variables were excluded Candidate variable excluded Statistics at point removed R 2 improvement in model when included (%) Other variables in model when removed
Wald Statistic P value
1 Gender 3.77 .06 1 Age
2 ADHD 10.55 .03 < 1 Age ID Status

Finally, Table 11.7 shows the results of the original analysis in which all cases were included – the adjusted model, in which cases associated with Cook’s distances < 1 and studentized residuals > 2 were removed, is reported in the main body of the report.

Table 11.7 Logistic Regression of the factors which predict mainstream school as the highest level of educational support – original model including all cases

Model β SE β Wald χ 2 df Exp β
Odds-Ratio Lower Upper
Block 1
Age .01 .00 6.45 1 1.01 1.00 1.02
Block: Nagelkerke R 2 = .04
Block 2
Age .01 .01 1.92 1 1.10 1.00 1.02
ID Status*** -1.67 .28 44.32 1 .19 .11 .33
Block: Nagelkerke R 2 = .09 Model: Nagelkerke R 2 = .13
Block 3
Age* .00 .01 .032 1 1.01 1.00 1.02
ID Status*** -1.61 .28 40.73 1 .20 .12 .35
Depression* .59 .25 5.88 1 1.80 1.10 2.95
Block: Nagelkerke R 2 = .02 Model: Nagelkerke R 2 = .15

Highest level of educational support (special unit mainstream school) logistic regression

Table 11.8. shows the variables identified as candidate predictors for the model testing the likelihood of individuals receiving their highest level of educational support from a special unit in a mainstream school. All candidate variables listed were found to be significant predictors at a level of .25 or less when included in a single independent variables regression models with the dependent variable set to indicate whether an ASD individual ≥ 16 years had received their highest level of educational support from a special unit in a mainstream school.

Table 11.8 Candidate variables for model testing the likelihood of individuals receiving their highest level of educational support from a special unit mainstream school

Block 1
Demographics
Block 2
Core Diagnoses
Block 3
Co-occurring Conditions
Block 4
Other Outcomes
Block 5
Service use*
Age
Gender
Autism diagnosis
Asperger’s/ HFA diagnosis
ID status
ADHD
Depression
Anxiety
Challenging Behaviour
No predictors identified GH service use

* Variables in this column indicates service was used times in the last 6 months (with the exception of GH services where the cut-off was ≥ 3 uses in the last 6 months); GH = General Health, MH = Mental Health, ID & PD = Intellectual Disability and Physical Disability

There was a degee ofoverlap in the candidate variables identified, specifically in the case of ‘autism diagnosis’, ‘Asperger’s/ HFA diagnosis’ and ‘ ID status’. Inclusion of all of these variables in a logistic regression would result in multicollinearity, an issue which in turn could influence the reliability of the final results. To avoid this, these variables were compared in terms of their associated Wald statistic, p value, and Nagelkerke R 2, and the strongest predictor, ‘ ID status’ was included as part of the final modelling exercise, and the other variables were left out of the final analysis.

Table 11.9 shows the candidate variables that were ultimately left out of the final model as result of (a) not significantly improving the null model - as indicated by a low Wald statistic (b) being a highly non-significant predictor - a value of p > .50 was used here and (c) explaining < 2% of the variance in whether or not individuals received their highest level of educational support from a special unit it a mainstream school.

Table 11.9 Candidate variables excluded from logistic regression model testing whether or not someone received their highest level of educational support from a special unit in a mainstream school

Order in which variables were excluded Candidate variable excluded Statistics at point removed R 2 improvement in model when included (%) Other variables in model when removed
Wald Statistic p value
1 ID status 2.20 .24 < 1 Age & Gender
2 Anxiety .20 .72 < 1 Age & Gender
3 Challenging behaviour 1.52 .14 < 1 Age, Gender, ADHD, Depression
4 General health service use .32 .21 < 1 Age, Gender, ADHD, Depression

Appendix C.6 Employment Logistic Regression Analysis alternative statistics

Table 11.10 shows the variables identified as candidate predictors for the model testing the likelihood of being in full time employment. All candidate variables listed were found to be significant predictors at a level of .25 or less when included in a single independent variables regression models with the dependent variable set to indicate whether an ASD individual ≥ 16 years was in employment (including supported employment).

Table 11.10 Candidate variables for model testing the likelihood of individuals being in employment

Block 1
Demographics
Block 2
Core Diagnoses
Block 3
Co-occurring Conditions
Block 4
Other Outcomes
Block 5
Service use*
Age
Aged 27 – 49
Autism Diagnosis
Asperger’s/ HFA Diagnosis
ID Combined
ADHD
Mood Disorders
Depression
Anxiety
Ability to Travel Independently
Attendance of mainstream school as highest level of educational support Relationship Status
Standard Grade General Qualification or Above
Highers, Certificate of Sixth year or Advanced Highers
MH service use
Care & respite service use

* Variables in this column indicates service was used times in the last 6 months (with the exception of GH services where the cut-off was ≥ 3 uses in the last 6 months); GH = General Health, MH = Mental Health, ID & PD = Intellectual Disability and Physical Disability

Notably there was some overlap in the candidate variables identified, specifically in the case of (a) ‘Age’ and ‘Aged 27 – 49’, (b) ‘autism diagnosis’, ‘Asperger’s/ HFA diagnosis’ and ‘ ID status’ and (b) ‘mood disorders’ and ‘depression diagnosis’. Inclusion of these similar variables in a logistic regression would result in multicollinearity, an issue which in turn could influence the reliability of the final results. To avoid this, these variables were compared in terms of their associated Wald statistic, p value, and Nagelkerke R 2, and the strongest predictors, ‘Age’, ‘ ID status’ and ‘Asperger’s/ HFA diagnosis’ were included as part of the final modelling exercise, and the other candidate variables were left out of the final analysis.

Table 11.11 Candidate variables excluded from logistic regression model focusing on highest level of educational support special unit

Order in which variables were excluded Candidate variable excluded Statistics at point removed R 2 improvement in model when included (%) Other variables in model when removed
Wald Statistic p-value
1 Depression 3.96 .06 < 1 Aged 27 – 49, Asperger’s/ HFA diagnosis
2 Anxiety .67 .49 < 2 Aged 27 – 49, Asperger’s/ HFA diagnosis
3 Attendance of mainstream school as highest level of educational support
10.47 .68 < 1 Aged 27 – 49, Asperger’s/ HFA diagnosis, ability to travel independently,
4 Asperger’s/ HFA diagnosis 1.15 .37 < 1 Aged 27 – 49, ability to travel independently, relationship status
5 Standard Grade General Qualification or Above
3.64 .05 < 2 Aged 27 – 49, ability to travel independently, relationship status
6 Highers, Certificate of Sixth year or Advanced Highers .19 .75 1 Aged 27 – 49, ability to travel independently, relationship status
7 GH service use 3.00 .14 < 2 Aged 27 – 49, ability to travel independently, relationship status
8 MH service use 2.16 .20 < 2 Aged 27 – 49, ability to travel independently, relationship status

Table 11.11 shows the candidate variables that were ultimately left out of the final model as result of (a) not significantly improving the null model - as indicated by a low Wald statistic (b) being a highly non-significant predictor - a value of p > .50 was used here and (c) explain < 2% of the variance in whether or not ASD individuals ≥16 years were in employment.

Finally, Table 11.12 shows the results of the original analysis in which all cases were included – the adjusted model, in which cases associated with Cook’s distances < 1 and studentized residuals > 2 were removed, is reported in the main body of the report.

Table 11.12 Logistic Regression of the factors which predict the ASD employment (alternative model including cases with Cook’s distances > 1 and studentised residuals > 2)

Model β SE β Wald χ 2 df Exp β
Odds-Ratio Lower Upper
Block 1
Aged 27 – 49*** .99 .26 19.21 1 2.71 1.63 4.53
Block: Nagelkerke R 2 = .07
Block 2
Aged 27 – 49*** .82 .27 12.31 1 2.28 1.34 3.87
Ability to Travel*** 1.13 .28 19.79 1 3.10 1.78 5.39
Block: Nagelkerke R 2 = .07 Model: Nagelkerke R 2 = .14
Block 3
Aged 27 – 49*** .79 .27 11.13 1 2.20 1.29 3.77
Ability to Travel*** .98 .29 14.20 1 2.67 1.52 4.72
Relationship Status*** .77 .29 7.36 1 2.16 1.21 3.83
Block: Nagelkerke R 2 = .02 Model: Nagelkerke R 2 = .16

* Variables in this column indicates service was used times in the last 6 months (with the exception of GH services where the cut-off was ≥ 3 uses in the last 6 months); GH = General Health, MH = Mental Health, ID & PD = Intellectual Disability and Physical Disability

Appendix C.7 Relationship status logistic regression analysis alternative statistics

Table 11.13 shows the variables identified as candidate predictors for the model testing the likelihood of individuals aged ≥ 16 years being in a long-term relationship. All candidate variables listed were found to be significant predictors at a level of .25 or less when included in a single independent variables regression models with the dependent variable set to indicate whether an ASD individual ≥ 16 years was in a long-term relationship (lasting ≥ 2 years).


Table 11.13 Candidate variables for model testing the likelihood of individuals being involved in a long-term relationship

Block 1
Demographics
Block 2
Core Diagnoses
Block 3
Co-occurring Conditions
Block 4
Other Outcomes
Block 5
Service use
Age
Aged 27 – 49
Gender
Autism diagnosis
Asperger’s/ HFA diagnosis
ID status
ADHD
Mood disorders
Depression
Anxiety
HE_3
Standard Grade General Qualification or Above Achieved
Employment Status Residential Status
Ability to travel independently
GH service use
ID and PD service use
Social engagement service use
Care and respite service use

* Variables in this column indicates service was used times in the last 6 months (with the exception of GH services where the cut-off was ≥ 3 uses in the last 6 months); GH = General Health, MH = Mental Health, ID & PD = Intellectual Disability and Physical Disability

Notably there was some overlap in the candidate variables identified, specifically in the case of (a) ‘age’ and ‘aged 27 - 49’ and (b) ‘autism diagnosis’, ‘Asperger’s/ HFA diagnosis’, and ‘ ID status’, and (c) ‘mood disorders’, ‘depression diagnosis’ and ‘anxiety diagnosis’. Inclusion of these similar variables in a logistic regression would result in multicollinearity, an issue which in turn could influence the reliability of the final results. To avoid this, these variables were compared in terms of their associated Wald statistic, p value, and Nagelkerke R 2, and the strongest predictors, ‘Age’, ‘Asperger’s/ HFA diagnosis’, ‘depression diagnosis’ and ‘anxiety diagnosis’ were included as part of the final modelling exercise, and the other candidate variables were left out of the final analysis.

Table 11.14 shows the candidate variables that were ultimately left out of the final model as result of (a) not significantly improving the null model - as indicated by a low Wald statistic (b) being a highly non-significant predictor - a value of p > .50 was used here and (c) explain < 2% of the variance in whether or not ASD individuals ≥16 years were in relationship status.

Table 11.14 Candidate variables excluded from logistic regression model focusing on relationship status

Order in which variables were excluded Candidate variable excluded Statistics at point removed R 2 improvement in model when included (%) Other variables in model when removed
Wald Statistic p-value
1 Gender 2.53 < .001 < 1 Age
2 ADHD 6.71 < .01 < 1 Age, Asperger’s/ HFA diagnosis
3 Anxiety diagnosis .01 > .05 < 1 Age, Asperger’s/ HFA diagnosis
4 Attendance of mainstream school as highest level of educational support
5.01 < .05 < 2 Age, Asperger’s/ HFA diagnosis
5 Standard Grade General Qualification or Above
1.97 < .05 < 1 Age, Asperger’s/ HFA diagnosis
6 Residential Status .40 < .05 < 1 Age, Asperger’s/ HFA diagnosis, Employment status
7 Ability to travel independently 1.04 < .05 < 1 Age, Asperger’s/ HFA diagnosis, Employment status
8 GH service use 1.45 < .05 < 1 Age, Asperger’s/ HFA diagnosis, Employment status
9 ID and PD service use 1.29 < .05 < 1 Age, Asperger’s/ HFA diagnosis, Employment status
10 Social Engagement service use 2.78 < .05 < 1 Age, Asperger’s/ HFA diagnosis, Employment status
11 Care and Respite service use 2.88 < .05 < 1 Age, Asperger’s/ HFA diagnosis, Employment status

Table 11.15 Logistic regression analysis testing the factors predicting relationship status amongst ASD individuals aged ≥ 16 years (n = 398): original model including all cases

Model β SE β Wald χ 2 df Exp β
Odds-Ratio Lower Upper
Block 1
Age *** .10 .01 61.73 1 1.11 1.08 1.14
Block: Nagelkerke R 2 = .23
Block 2
Age *** .07 .01 41.23 1 1.07 1.05 1.10
Asperger’s/ HFA diagnosis *** 1.63 .40 16.17 1 5.10 2.35 11.07
Block: Nagelkerke R 2 = .07 Model: Nagelkerke R 2 = .30
Block 3
Age *** .06
33.64 1 1.07 1.04 1.09
Asperger’s/ HFA diagnosis **** 1.40
12.88 1 1.85 1.85 8.91
Depression *** 1.00
10.35 1 2.73 1.47 5.05
Block: Nagelkerke R 2 = .03 Model: Nagelkerke R 2 = .33
Block 4
Age *** .07 .01 35.25 1 1.07 1.05 1.09
Asperger’s/ HFA diagnosis *** 1.24 .41 9.86 1 3.47 1.56 7.68
Depression *** .90 .32 8.00 1 2.57 1.31 4.62
Employment Status *** .99 .33 10.00 1 2.69 1.42 5.10
Block: Nagelkerke R 2 = .03 Model: Nagelkerke R 2 = 36

Appendix C.8 Residential status logistic regression analysis alternative statistics

Table 11.16 shows the variables identified as candidate predictors for the model testing the likelihood of ASD individuals ≥ 16 years living independently. All candidate variables listed were found to be significant predictors at a level of .25 or less when included in a single independent variables regression models with the dependent variable set to indicate whether an ASD individual ≥ 16 years living independently (either alone or with friends or a partner).

Table 11.16 Candidate variables for model testing the likelihood of individuals living independently

Block 1
Demographics
Block 2
Core Diagnoses
Block 3
Co-occurring Conditions
Block 4
Other Outcomes
Block 5
Service use *
Age
Aged 27 – 49
Gender
Autism diagnosis
Asperger’s/ HFA diagnosis
ID status
Mood disorders
Depression
Anxiety
Highest level of educational support at a mainstream school
Standard Grade general or above qualification achieved
Employment status
Relationship status
Ability to travel independently
GH service use
ID and PD service use
Social engagement service use

* Variables in this column indicates service was used times in the last 6 months (with the exception of GH services where the cut-off was ≥ 3 uses in the last 6 months); GH = General Health, MH = Mental Health, ID & PD = Intellectual Disability and Physical Disability

Notably there was some overlap in the candidate variables identified, specifically in the case of (a) ‘age’ and ‘aged 27 - 49’ and (b) ‘autism diagnosis’, ‘Asperger’s/ HFA diagnosis’, and ‘ ID status’, and (c) ‘mood disorders’, ‘depression’ and ‘anxiety’. Inclusion of these similar variables in a logistic regression would result in multicollinearity, an issue which in turn could influence the reliability of the final results. To avoid this, these variables were compared in terms of their associated Wald statistic, p value, and Nagelkerke R 2, and the strongest predictors, ‘Age’, ‘Asperger’s/ HFA diagnosis’ and ‘mood disorders’ were included as part of the final modelling exercise, and the other candidate variables were left out of the final analysis.

Table 11.17 shows the candidate variables that were ultimately left out of the final model as result of (a) not significantly improving the null model - as indicated by a low Wald statistic (b) being a highly non-significant predictor - a value of p > .50 was used here and (c) explaining < 2% of the variance in whether or not individuals received their highest level of educational support from a special unit it a mainstream school.

Table 11.17 Candidate variables excluded from logistic regression model testing whether or not someone received their highest level of educational support from a special unit in a mainstream school

Order in which variables were excluded Candidate variable excluded Statistics at point removed R 2 improvement in model when included (%) Other variables in model when removed
Wald Statistic p-value
1 Gender 1.58 .23 1 Age
2 Asperger’s/ HFA diagnosis * 3.58 .06 5 Age, Depression, Ability to travel independently
4 Highest level of educational support at a mainstream school
8.79 .36 1 Age, Depression, Ability to travel independently
5 Employment status 1.07 < .001 < 1 Age, Depression, Ability to travel independently, Standard Grade general or above qualification achieved
6 Standard Grade general or above qualification achieved *
20.56 < .001 6 Age, Depression, Ability to travel independently, Standard Grade general or above qualification achieved
7 GH service use 1.03 .32 < 1 Age, Depression, Ability to travel independently, Standard Grade general or above qualification achieved
8 ID & PD service use .23 .66 < 1 Age, Depression, Ability to travel independently, Standard Grade general or above qualification achieved
9 Social engagement service use 1.38 .24 < 1 Age, Depression, Ability to travel independently, Standard Grade general or above qualification achieved

* In each case these variables were removed as he values associated with the odds ratio statistics crossed 1, indicating that these were unreliable predictors.

Finally, Table 11.18 shows the results of the original analysis in which all cases were included – the adjusted model, in which cases associated with Cook’s distances < 1 and studentized residuals > 2 were removed, is reported in the main body of the report.

Table 11.18 Logistic regression analysis testing the factors predicting likelihood of highest level of educational support being received from a special unit in a mainstream school

Model β SE β Wald χ 2 df Exp β
Odds-Ratio Lower Upper
Block 1
Age*** .10 .01 78.81
1.10 1.08 1.13
Block: Nagelkerke R 2 = .34
Block 2
Age*** .09 .01 67.61
1.10 1.07 1.12
Asperger’s/ HFA Diagnosis*** 1.30 .31 18.94
3.66 2.00 6.70
Block: Nagelkerke R 2 = .06 Model: Nagelkerke R 2 = .40
Block 3
Age*** .09 .01 62.80
1.10 1.10 1.12
Asperger’s/ HFA Diagnosis*** 1.22 .32 16.12
3.40 1.83 6.32
Mood Disorder Diagnosis*** 1.24 .28 19.83
3.44 1.98 6.00
Block: Nagelkerke R 2 = .05 Model: Nagelkerke R 2 = .45
Block 4
Age*** .09 .01 50.78
1.09 1.06 1.12
Asperger’s/ HFA Diagnosis .63 .35 3.45
1.87 .95 3.69
Mood Disorder Diagnosis*** 1.12 .29 14.95
3.05 1.71 5.43
Travel*** 1.56 .36 19.80
3.75 2.34 9.63
Block: Nagelkerke R 2 = .05 Model: Nagelkerke R 2 = .50
Block 5
Age*** .08 .01 37.88
1.08 1.05 1.11
Asperger’s/ HFA Diagnosis .46 .36 1.80
1.60 .79 3.19
Mood Disorder Diagnosis*** .94 .31 9.72
2.57 1.40 4.72
Travel*** 1.46 .37 16.53
4.30 2.09 8.86
Relationship*** 1.80 .42 20.12
6.02 2.63 13.78
Block: Nagelkerke R 2 = .05 Model: Nagelkerke R 2 = .55

Appendix C.9 Service use alternative statistics

Table 11.19 Service use by ASD individuals and the parents of ASD individuals in the last 6 months (n = 404)

Demographics and Outcomes Total n (%)
Mental Health Services 243 (26)
Psychiatrist 120 (13)
Psychologist 146 (15)
Group Counselling 4 (0)
Individual Counselling 11 (1)
GH Services 83 (9)
GP Visits ( ≥ 3 visits) 83 (9)
ID & PD Services 232 (24)
Child Developmental Paediatrician 60 (6)
Occupational Therapist 75 (8)
Speech Therapist 98 (10)
Physiotherapist 28 (3)
Community LD Nurse 31 (3)
Other Community Nurse 34 (4)
Other Community LD Member 18 (2)
Challenging Behaviour Team Member 13 (1)
Employability Services 5 (1)
Sheltered Workshop 2 (0)
Individual Placement 5 (1)
Social Engagement Services 198 (21)
Befriending Service 26 (3)
Social Club 89 (9)
After School Club 59 (6)
Play-schemes 63 (7)
Care & Respite Services 116 (12)
Day care 25 (3)
Babysitter 23 (2)
Holiday Scheme 56 (6)
Home Help 22 (2)

Table 11.20 Service use amongst ASD individuals (n = 950) according to age, gender, ASD diagnosis and ID status

Demographics and Diagnoses n* Use of support services n (% of subsample)
MH Services GH Services ID & PD Services Employability Services Social Engagement Services Care and Respite Services
Age (years)
< 16 546 120 (22) 35 (6) 17 (3) 0 (0) 142 (26) 76 (14)
16 – 26 219 58 (26) 20 (9) 38 (17) 4 (2) 39 (18) 23 (11)
27 – 37 76 28 (37) 7 (9) 15 (20) 0 (0) 8 (11) 9 (12)
38 – 49 73 27 (37) 15 (21) 9 (12) 0 (0) 6 (8) 6 (8)
≥ 50 36 10 (28) 6 (17) 3 (8) 1 (3) 3 (8) 2 (6)
Gender
Male 736 179 (24) 48 (7) 177 (24) 4 (1) 157 (21) 86 (12)
Female 215 65 (30) 36 (17) 55 (26) 1 (0) 41 (19) 30 (14)
ASD Diagnosis
Autism 217 53 (24) 19 (9) 73 (34) 2 (1) 47 (22) 39 (18)
Asperger’s/ HFA 426 122 (29) 43 (10) 62 (15) 0 (0) 79 (19) 35 (8)
Other ASDs 307 68 (22) 21 (7) 97 (32) 3 (1) 72 (23) 42 (14)
ID Status
No ID 522 151 (29) 53 (10) 86 (16) 3 (1) 96 (18) 46 (9)
Mild ID 28 7 (25) 1 (4) 6 (21) 1 (4) 10 (36) 4 (14)
Moderate/Severe ID 99 24 (24) 5 (5) 35 (35) 1 (1) 28 (28) 22 (22)

a Reflects number of people for whom data was available, not the total number of people meeting this description in the sample

Table 11.21 Service use amongst ASD individuals (n = 950) according to co-occurring conditions, employment status, relationship status and residential status

Demographics and Diagnoses n a Use of support services n (% of subsample)
MH Services GH Services ID & PD Services Employability Services Social Engagement Services Care and Respite Services
Co-occurring conditions b
ADHD 92 37 (40) 5 (5) 27 (29) 0 (0) 22 (24) 17 (18)
OCD/Tourette’s syndrome 52 27 (52) 10 (19) 14 (27) 1 (2) 6 (12) 6 (12)
Epilepsy 45 12 (27) 5 (11) 13 (29) 0 (0) 9 (20) 6 (13)
Mood Disorders 180 87 (48) 40 (22) 39 (22) 1 (1) 22 (12) 19 (11)
Employment Status
In Employment 112 43 (38) 16 (14) 12 (11) 2 (2) 14 (13) 6 (5)
Unemployed 292 81 (28) 32 (11) 54 (18) 3 (1) 43 (15) 35 (12)
Relationship Status
Involved in long-term relationship 71 22 (31) 16 (23) 4 (6) 0 (0) 3 (4) 1 (1)
Not involved in long-term relationship 310 101 (33) 32 (10) 61 (20) 5 (2) 53 (17) 39 (13)
Residential Status
Living Independently 126 44 (35) 21 (17) 12 (10) 0 (0) 8 (6) 10 (8)
Dependent on Others 237 75 (32) 25 (11) 50 (21) 5 (2) 45 (19) 29 (12)

a Reflects number of people for whom data was available, not the total number of people meeting this description in the sample b Only the 4 most prevalent co-occurring conditions are mentioned here

Appendix C.10 Family impact linear regression analysis alternative statistics

Table 11.22 shows the variables identified as candidate predictors for the model testing the likelihood of being in full time employment. All candidate variables listed were found to be significant predictors at a level of .25 or less when included in a single independent variables regression models with the dependent variable set to indicate parent and carer scores in responses to the question ‘ To what extent does caring for an individual with ASD influence the extent to which you can be in employment, training or education?

Table 11.22 Candidate variables for model testing predictors of responses to the question ‘To what extent does caring for an individual with ASD influence the extent to which you can be in employment, training or education?’

Block 1
Demographics
Block 2
Core Diagnoses
Block 3
Co-occurring Conditions
Block 4
Other Outcomes
Block 5
Service use *
Age
Gender
Asperger’s/ HFA diagnosis
ID status
No predictors identified Highest level of educational support at a mainstream school
Residential status
Ability to travel independently
ID and PD service use
Social engagement service use
Care and respite service use

Notably there was some overlap in the candidate variables identified, specifically in the case of ‘Asperger’s/ HFA diagnosis’, and ‘ ID status’. Inclusion of these similar variables in a logistic regression would result in multicollinearity, an issue which in turn could influence the reliability of the final results. To avoid this, these variables were compared in terms of their associated Wald statistic, p value, and Nagelkerke R 2, and the strongest predictor, ‘ ID status’ was included as part of the final modelling exercise, and the other candidate variable left out of the final analysis.

Table 11.23 shows the candidate variables that were ultimately left out of the final model as result of (a) not significantly improving the null model - as indicated by a low Wald statistic (b) being a highly non-significant predictor - a value of p > .50 was used here and (c) explaining < 2% of the variance in whether or not individuals received their highest level of educational support from a special unit it a mainstream school.

Table 11.23 Candidate variables excluded from logistic regression testing predictors of responses to the question ‘To what extent does caring for an individual with ASD influence the extent to which you can be in employment, training or education?’

Order in which variables were excluded Candidate variable excluded Statistics at point removed R 2 improvement in model when included (%) Other variables in model when removed
F value p-value
1 Sex 14.74 < .001 < 1 Age
2 Asperger’s/ HFA diagnosis 19.86 < .001 < 2 Age
4 HE_3 11.84 < .001 < 2 Age
5 ID status 11.35 < .001 < 2 Age and ability to travel independently
6 Residential status 10.35 < .001 < 1 Age and ability to travel independently
7 ID & PD service use 11.01 < .001 < 1 Age and ability to travel independently
8 Social engagement service use 10.00 < .001 < 1 Age and ability to travel independently
9 Care and respite service use 9.99 < .001 < 1 Age and ability to travel independently

Appendix C.11 Thematic Analyses

Table 11.24 Free comments from individuals with ASD (N = 9) and associated themes


Themes/ Sub-Themes:

Comments
Issues regarding diagnosis
Availability/lack of appropriate services available
1. I am a newly diagnosed female (February 2014) and although my diagnosis has helped in making sense of much of what has happened to me over the years, I am still learning about what it all means for me. I am finding that there is not much support for people in my situation - I do not need much day to day help but I could do with a regular opportunity to talk about how/how not to deal with things. Services seem to be focused upon more immediate needs.
Availability/lack of appropriate services available
2. I was diagnosed with ASD aged 3. Whilst I have had very good Educational Support any other support I have received (e.g. [name of Charity] social group) has been found and contact organised by my parents. I feel access to and information on social/peer groups for people with ASD should be encouraged and promoted when initial and ongoing assessments are done.
Availability/lack of appropriate services available 3. I feel in [Scottish City] that if you need support because you have an ASD you have to really, really fight for it. I now have the right support but it was not easy getting it.
*Comments about the research

Co-morbidity
Older adult

Issues regarding diagnosis

Stress and anxiety about employment

Stress and anxiety about day-to-day life/care

Availability/lack of appropriate services available
4. When composing your submission to the Scottish Government please also refer to the report "Getting on? Growing older with autism" published by [Charity] and the references it contains. Also there is a series of three or more programmes scheduled to be broadcast on BBC Radio Scotland in the near future "Black and White - A life with Autism", looking at the experiences of people who received a diagnosis of autism in later life. Too often services have only been made available if there is evidence or diagnosis of a learning disability or mental illness together with autism, but not for people with autism alone. The questionnaire gives the perception that the present study is primarily concerned with the cost to the social and health care services in childhood and young adults. There is also a cost to the Scottish Government where lack of appropriate support for adults of working age who have had to withdraw from meaningful employment because of the stress associated with both diagnosed and undiagnosed autism. There are many transitions in the journey from cradle to grave. Retirement or loss of employment and the withdrawal of the support structure that employment can provide is as critical as the transition between school and employment. Incorrect diagnosis can lead to a GP recommending a care pathway more appropriate for dementia than for an older person with dementia. Older adults may have managed to cope with hidden difficulties for most of their life but the ageing process severely curtails both the ability to cope and the resilience needed to overcome the daily problems caused by lack of motivation, inability to make decisions, lack of ability to plan and the tendency to be impulsive. Together these difficulties make self-management of one's personal environment extremely difficult and there is currently no support service available to provide appropriate support at the appropriate time according to individual needs. The lack of appropriate support structures will obviously incur unnecessary cost to both social and health care services, particularly if a person is unable to maintain an independent life in their own home. The redesign of the training framework is expected to provide an understanding of how to recognise and provide care and understanding for the whole of the journey through life. The balance of your questionnaire would be greatly improved if you include some recognition of what it means to be an older adult with autism and the services that are required to meet the added burden of getting older. There is also the issue that both social and health care services, particularly the gatekeepers, will identify or recognise the more common symptoms a person presents with, such as depression or functional bowel disorder, but fail to look for a more persistent, underlying cause, such as autism. Older adults are likely to have been ignored, mis-diagnosed or accused of mis-representing the difficulties they face on a daily basis. With the Scottish Strategy for Autism in place it is appropriate to identify the cost of providing the appropriate support and services, then comparing it to the cost of providing services that are ineffective and inappropriate. The comparison is therefore between the cost of the services that meet the need of the service provider, but not the service user, rather than meeting the needs of the service user.
*Comments about the research

Older adults

Availability/lack of appropriate services available

5. I am tired of seeing questionnaires like this which clearly focus on the needs of children and younger people. The vast majority of people with ASD in Scotland are adult males and we are being pushed to the side-lines and not having our needs met while smaller groups within the ASD community are having huge amounts of attention paid to them. This situation is ridiculous and needs to urgently be addressed. No one is suggesting that children and young people should not receive good services, but this has to be proportionate. There is no point in providing a Rolls-Royce service to children and young people who are then going to have to spend their adult lives receiving a second-hand Skoda service. The result of the inadequacy of service provision for adult males is to condemn them to increasing and debilitating mental health problems which could easily have been averted with relatively little investment. I am sick of all of this meaningless research which serves to keep professionals in jobs while having little to no benefit for members of the ASD community themselves. The whole autism strategy is flawed and has allowed far too much funding to go to research and far too little to go to actual service provision. All of the professionals involved in work supported by funding made available through the strategy are letting the community down while feathering their own nests. I am sick to death of professionals telling me that their research proves what provision is required to meet my needs while it actually does nothing of the sort - I know what my needs are so ask me in a meaningful way that will actually lead to a real outcome rather than leading another pile of meaningless verbiage which leaves adult males vulnerable and alone in communities across Scotland.
Stress and anxiety about education
6. Because it's only about the last 6 months, it does not pick up on how my life-ruining abuse by school homework and reckless predictions of high achievement, leaves me in adult life still unable to try to achieve anything educational for fear of the political effects of failing, and too shakingly anxious to face any educational test situation.
Older adult
Stress and anxiety about day-to-day life/care
Availability/lack of appropriate services available
7. I don't mean to be dramatic, but I've lived with a death wish for the last 27 years of my life, and my life has gone downhill all the way the last 34 years. I could be a very intense, selfish, or annoying person, but I know I can be a very pleasant, friendly and generous person, and I matured about 11 years ago. Becoming mature does nothing to solve extreme isolation however, and becoming old presents its own/additional problems on top of all the problems already existing. I wish there had been an Asperger community when I was younger, but even now the community and resources out there are very limited, especially outside of [Scottish City] and England.
Stress and anxiety about education
Availability/lack of appropriate services available
Stress and anxiety about employment
Issues about diagnosis here linked to Comorbidity
Stress and anxiety about day-to-day life/care
8. I would love to be able to study, but this would have to be remotely, and in my own time (when I'm feeling up to it, which is a long way from most of the time). Unfortunately, as soon as I start studying formally, even under these conditions, [Benefit System] would conclude that this means I am fit for work and able to handle their emotional thuggery. The current social insecurity system is thus designed to keep me down. Autism services in the area are a disaster. The [name of centre] in [Scottish Town] have no services for those over the age of 25, and I found myself insultingly patronised by one of their volunteers. Fife Action on Autism do not answer their emails. The [name of centre] in [Scottish City], who seem to have extensive groups and services, won't talk to me unless I pay them because I don't live in the [Scottish Local Authority. I'm grossly socially isolated. Mental health care: I need it but I'm not getting it. I was recently freed from a diagnosis of Emotionally Unstable Personality Disorder, after I pointed out that the symptoms are more consistent with the result of living in neurotypical society with an undiagnosed (until recently) AD. At this point, the shrink gave up. Note that there have been attempts at various interventions ( CBT, mindfulness therapy, art therapy, prescribed psychopharmaceuticals). My anxiety problem has been getting worse over the past year or two, and my sleep patterns are a mess. There is nothing more the GP can do, and I don't want to waste his time. I've reached the conclusion that digs about cultures of entitlement apply to me, and that I should not be asking for help. From my perspective, as a late-diagnosis adult, the system as regards those of us with Asperger syndrome is a complete mess (being very polite here: you know the words I want to use).
Comorbidity
Availability/lack of appropriate services available
9. There are no supports in [Scottish City] for people who have a physical disability/health condition as well as autism. None of the local NHS hospitals seem to understand autism or make any reasonable adjustments. There are very little services available for autistic adults who do not have a learning disability. [Charity] services require funding, but the majority of us have no access to this and do not have a social worker, nor have we ever been assessed for what help/support we need. Mental health services do not like dealing with autism but there is nowhere else to go.

Table 11.25 Comments from parents/carers (N=68) and associated themes and sub-themes


Themes/ Sub-Themes:

Comments
*Positive comments about the research 1. I am the Parent’s representative on the [Autism Group ] trying to improve services for those on the spectrum and their families. I am in contact with a group of 40 - -issues relating to younger children with ASD & parents -- and have distributed this questionnaire to them. Happy to help further if you need it and good luck with this important task. Implementing the Autism strategy is a real challenge.
Specific concerns about education/educational services Social issues (including difficulties with socialising, maintaining employment, or any forensic history) 2. I am one of 10 families whose children attended a special school who have been restrained and ill-treated by staff. There seems to be no accountability where children are hurt in council schools. We have fought long and hard and are prepared to campaign the government if needs be. Police Scotland [area] have no experience in disability and have no idea how to deal with autistic children or people with any kind of communication difficulty when there are allegations of abuse. This needs to change.
Concerns about availability/quality of appropriate services/ support in general Anxiety/Stress in carers day-to-day 3. I am aware of services but getting my home autistic-friendly and easy to maintain has been problematic. Having a domestic assistant while I attend to my children's needs have never been allowed. It gets messy here so I further isolate as I only invite anyone round when it’s tidy here. Sounds silly but it is a dignity thing. Practical measures are something that make a huge difference. Specialist mattresses which can be wiped down. I have locks all over the house… my child's room is the only room that does not have a lock on it. I'd design my home if I had the money. I'd have domestic staff too. Choices are limited. Mentally I am quite strong but I wonder how long for.
Concerns about availability/quality of appropriate services/ support in general Issues relating to comorbidities Social issues (including difficulties with socialising, maintaining employment, or any forensic history) Anxiety/Stress in individuals with ASD day-to-day 4. I do have great support for my younger child (13 years) through [Scottish City] Autism Support. His social motivation is very high but he also has learning difficulties. My eldest who I have written about here has a very low level of social motivation but is very clever. He doesn't like to leave the house at all and requires considerable support to not be reclusive. His anxiety is more disabling than anything.
Social issues (including difficulties with socialising, maintaining employment, or any forensic history) 5. I believe that, although the diagnosis is confined to High Functioning Autism, the person that I care for has symptoms of Borderline Personality Disorder and I attend group meetings to discuss this disorder. I find that, in the workplace, there is little understanding of the autism spectrum. The person I care for has had many jobs but has walked out of almost every one because of nastiness expressed in the workplace and although the human resources staff have asked him to return he would not and, in discussion with other carers I find that this is common amongst people on the autism spectrum who are employable.
Specific concerns about education/educational services Diagnostic Issues (e.g. problems with getting an initial diagnosis) 6. I am a parent of two sons with Asperger’s Syndrome & know of 3 other young males in local community. I have completed this questionnaire with regards to my oldest son who was diagnosed when he was 13. He had a very difficult transition from primary school to secondary. Professionals did not realise he had difficulties. When I raised the issue with an educational psychologist I was made to feel stupid and was told he definitely did not fit the criteria. After pushing for assessment other professionals were more helpful. He has been diagnosed but this took a year due to waiting list at [Diagnostic Service]. I would be willing to take part in research and am interested in any genetic link. There are 3 family members from both sides who have not been diagnosed but I suspect are on the spectrum.
Concerns about availability/quality of appropriate services/ support in general Diagnostic Issues (e.g. problems with getting an initial diagnosis) 7. I am a parent of a child with ASD but also a GP working with people who have ASD and their families. I have experienced first and second-hand the arduous struggle to obtain a diagnosis, and then the ongoing problems with the lack of support services available. I would be happy to assist in any way I can.
Concerns about availability/quality of appropriate services/ support in general Specific concerns about education/educational services Issues relating to adults with ASD 8. I am a parent of a child with ASD and also work with people on the spectrum. There are no services for people when they reach the age of 25. In the main teachers don't understand the condition and don't offer the right support to their pupils.
Concerns about availability/quality of appropriate services/ support in general Social issues (including difficulties with socialising, maintaining employment, or any forensic history) 9. I have been trying for over a year to find an autism-specific advocacy service for my son because of decisions made by the Court, which he was given no say in. There does not seem to be any suitable advocacy service in Scotland.
Specific concerns about education/educational services Anxiety/Stress in carers day-to-day Concerns about availability/quality of appropriate services/ support in general 10. I have experienced lots of problems with getting the right education and health care for my son due to professionals not understanding his autism. I had to fight to get him changed into an ASD placement as he was not progressing in the ASN placement he was given. Also my son has many health issues but an extremely high pain threshold and shows little signs of illness. Unfortunately not many medical professionals understand this so I have had to fight for any kind of treatment for him. Most times I get accused of being an over-anxious parent and was even offered anti-depressants at one of my son's appointments. I trust I know my son better and have been proven that I do many times. These fights are what makes life much harder for us. I care for him because he's my son but when you can't get the right care/education/help because his autism makes it hard for professionals to see. I find that the biggest disability we face.
Impact on the family Anxiety/Stress in individuals with ASD to day-to-day Positive Comments re. outcomes 11. My son was diagnosed at age 3 and he required support from a variety of professionals throughout primary school. There was also more of an impact on family members at that time. Fortunately my son had progressed socially and he has completed two years at college. He is about to start a Computer Science course at University and is entering at Year 3. He still gets anxious about situations and needs support from parents but on the whole is managing to be fairly independent. He is still living at home as he doesn't feel ready to live on his own.
Concerns about availability/quality of appropriate services/ support in general Anxiety/Stress in carers day-to-day 12. My son’s lack of support from health, education etc. is not because he doesn't need it, it's because it's just not there/available. We live on the west coast of the [local authority] where resources are few and far between. Our disability nurse retired in January and has not been replaced! I take a day off for a dental appointment because the specialist dentist is in [Scottish Town], 1 hours travel from us. Moaning now.....sorry!
Anxiety/Stress in carers day-to-day Concerns about financial issues related to support (including benefits, and funding for services) 13. No matter what age a person with ASD is they will always need some form of help. The change over from DLA to PIP is causing so much stress for carers that have to apply for the ASD sufferer. We have had to phone every week to see if my son’s DLA was going to be extended. We applied for his PIP in February this year we have been told it will be January 2015 before we find out if he will get it or not. He hasn't changed in the 16 years since his diagnosis and things get harder for him every year not easier so why should his claim for DLA or PIP need to take so long. This causes stress to the person and their carer.
Diagnostic Issues (e.g. problems with getting an initial diagnosis) 14. My youngest has working diagnosis of ASD and possible ADHD. We are now going into P4. The time taken to reach a diagnosis and the support my child needs has I feel taken a lifetime to come. This needs to be addressed.
Positive Comments re support/outcomes 15. My son has the best support we can hope for at our local primary school and has moved from having to have a SLA to now coping with all the work he is set just with the help of his teacher. His school always have great transition between years and choose his class teachers carefully! I couldn't ask for better and I am aware from attending support groups and chatting with other parents that everyone is not quite so lucky
Specific concerns about education/educational services Anxiety/Stress in individuals with ASD education Anxiety/Stress in carers day-to-day Concerns about financial issues related to support (including benefits, and funding for services) 16. My son is not able to travel on the school transport without it causing him great anxiety. When I am not in work, I have to take my son to and from school myself which is a mileage of 32 miles per day as we live in a rural area. I often try to take him in, even when I am working which requires me to request a late start at work which does cause my employers some difficulties. I have to juggle the need to keep my job for financial reasons and not letting my son get too anxious.
Concerns about financial issues related to support (including benefits, and funding for services) 17. I wish applying for benefits was made easier, carers do not have the time to fill in these very long forms. If a person as a life-long disability surely these departments can accept a letter from a specialist/doctor. I feel carers are not valued enough an l think carers allowance should be a lot higher, then there would be no need for other benefits. I feel the person with the disability should have the same chances in life that any mainstream person as regardless of the cost to achieve it. I feel that the Carer should have a right to a life outside the caring role. If the disabled person needs a specialist type of care which is more expensive than the norm then it should be provided. It should not be a choice between quality instead of quantity.
Concerns about financial issues related to support (including benefits, and funding for services) 18. In relation to employment I cannot do a job of choice or one I studied to do instead I have to do work which fits around my son's needs including some self-employed work which I have to stop if he needs additional care and therefore, my income stops so we have significant loss of earnings
*Positive Comments re. research Specific concerns about education/educational services 19. Thank you for doing this research. The support & services available to parents with Asperger’s is limited particularly if your child goes to a private school. Our local authority [Scottish City], will not provide us with access to their services despite us paying council tax and the private schools are not fully equipped so we are caught between the two. My son is very attached to his school & moving him would have a detrimental impact.
Issues relating to adults with ASD 20. The impact of living with autism and its challenges change depending on what stage of life we are at. These answers may have been very different if answered 10 years ago. My worries now are very different from the worries I had when my son was younger
Issues relating to females with ASD Concerns about financial issues related to support (including benefits, and funding for services) 21. The impact of my daughter’s autism on our life has been lessened by the fact that we have to date paid for a full time nanny who has special needs experience. This has allowed me to stay in full-time employment & has limited the time I have had to take off work. From August my younger child (who is not autistic) starts school & we have decided that we will no longer keep on the nanny [as] both our children will be at school. I am therefore expecting the ability to work as much as I have to be directly affected by the decision & that I will need to take more time off to care for my daughter. I am also expecting that it may influence the answers that I have given in this survey.
Specific concerns about education/educational services Concerns about availability/quality of appropriate services/ support in general 22. The lack of any ABA-based schools or provision in Scotland meant that I had to set up and run an ABA programme for my son, with professional help from a Board Certified Behaviour Analyst. This has enabled him to live at home with his family and attend local schools, mainstream and special, with shadows from the ABA programme. Existing interventions which were offered such as speech and language therapy and attendance at special playgroup were very ineffective - my son lost all his speech and play skills whilst receiving this standard type of provision and at the same time he developed many challenging behaviours. Every professional who approached him seemed to assume he was functioning at a much higher level than he actually was. In desperation we started ABA and it made a huge difference. It assumed nothing, and started from scratch an individually tailored programme to teach him meaningful and functional skills, and strategies to deal with challenging behaviour by teaching an alternative way to express these needs. This therapy should be available to children who need it in Scotland and it is not - largely as a result of widespread ignorance about what modern ABA entails in practice and what it can achieve. It is not a cure for autism.
Positive Comments re support/outcomes Concerns about availability/quality of appropriate services/ support in general 23. The services and support that [Scottish City] Autism Support provides are invaluable to us. They provide services and activities that no one else does and without them my son would not be as able to socialise with his peers in a variety of environments nor have opportunity to learn skills. The council provide nothing similar, nor do NAS.
Diagnostic Issues (e.g. problems with getting an initial diagnosis) Specific concerns about education/educational services 24. Knew something was wrong from the day my child started school. Continually asked for help until my daughter took ill in P7 Put down to stress. S2 before teachers listened to me and diagnosis in 2010. My daughter coped with mainstream school and was able to keep up with the rest of the class because we took the time to go through things with her and teach her appropriate behaviour sarcasm metaphors etc. Teachers did not recognise when she was struggling and she could not cope with sarcasm resulting in tears and melt downs at home. A better understanding from teachers and professionals is needed. Just because someone can do one thing that they don't struggle with the simplest of things.
Concerns about availability/quality of appropriate services/ support in general Diagnostic Issues (e.g. problems with getting an initial diagnosis) Anxiety/Stress in carers day-to-day Anxiety/Stress in individuals with ASD day-to-day
25. There are not enough supports for the families of children with ASD. I have had an awful experience of being criticised for my parenting and my son was not diagnosed until 11 years old. When seen by a CAHMS worker (for depression and anger management) we were told he was manipulative and knew exactly what he was doing to cause disruption.
Concerns about availability/quality of appropriate services/ support in general Specific concerns about education/educational services Anxiety/Stress in individuals with ASD education Positive Comments re. support/outcomes 26. Support in school tailored for young people is so difficult to access. Our daughter was treated very badly in her first secondary school which resulted in mental and physical problems, and her not being in school for several months, her new school have been amazing and proves what can happen if the will is there. Not enough support available to parents.
Social issues (including difficulties with socialising, maintaining employment, or any forensic history) Concerns about availability/quality of appropriate services/ support in general 27. My son [name] does suffer from isolation in this region, he is now accessing a work skills programme via the phone as we live off the main bus routes. I had to fight to get this in place. There are no realistic support programmes in place for my son and luckily I have 30 years’ experience of supporting individuals myself. I am also diagnosed with Asperger’s so absolutely understand where he is coming from and what his support needs are. We don`t ask social work for anything but a little understanding from the unemployment programmes would be good.
Specific concerns about education/educational services Concerns about availability/quality of appropriate services/ support in general Issues relating to adults with ASD Concerns about financial issues related to support (including benefits, and funding for services) 28. There is a huge lack of services at the school-leaver/college stage. All the children’s services stop and yet my son cannot get adult services - not even an assessment as he is not considered sufficiently "at risk" as he has us. But we are getting older and worry about how he will manage when we are not there. I wish there was someone to help us workout what to do for him – like the Named Person they will be having soon for all children in Scotland. College not interested in advice etc. as he doesn't appear classically "disabled" to them. It was hard work constantly monitoring what is happening at college and looking out for further opportunities for him. We pay privately to have his Speech Therapist come weekly just so he can have someone to talk things over with apart from us. He doesn't get DLA anymore- they said he no care needs!!! But it was because he has no professionals in his life to put in a statement on the application form!!
Concerns about availability/quality of appropriate services/ support in general 29. There is far too much documentation stating that local authorities cater for ASD when clearly they do not, at least only a bit. What is needed is comprehensive supported social skills opportunities to interact in the community. This is the only way for our family members to learn in a safe way how to get on in the world.
Concerns about availability/quality of appropriate services/ support in general Issues relating to adults with ASD Issues relating to HFA 30. I would like to bring attention to how little information and support is targeted to the carers of adults with HFA. Most services are geared towards parents of autistic children, but more and more people are being diagnosed as adults.
Concerns about availability/quality of appropriate services/ support in general 31. We do not receive any support for ourselves or for our son and as we are aging we will have to buy in more services as time goes on. He will be unable to access medical, social work or any such support ever because of his specific communication difficulties and this is always a concern for us (his parents)
Issues relating to adults with ASD Concerns about availability/quality of appropriate services/ support in general 32. Most of the support services are aimed at parents of young children. There is very little available for teenagers and young adults locally. Also, please understand, while I may not be a clinician or a Doctor, I am a parent and as such I am an expert on my on child. My observations and concerns should not be dismissed as the ramblings of a neurotic mother. I have spoken to many parents (mainly mothers) who agree that they are not listened to.
Impact on the family 33. We are an Autism family. Not because we all have Autism but we have to adapt and ebb and flow as a family unit, smoothly. Every ripple affects each one of us.
Impact on the family Concerns about financial issues related to support (including benefits, and funding for services) Specific concerns about education/educational services Anxiety/Stress in individuals with ASD education 34. We have managed because one of us has always been at home. This makes caring for all our children manageable. Financially it was tight at times, but it meant minimal childcare costs except in emergencies. But it also meant we knew someone was there for our son. He needed extra support around school as school was very stressful especially up till P5. He still needs emotional support around the more difficult days and having a parent at home helps immensely.
Anxiety/Stress in carers day-to-day Concerns about financial issues related to support (including benefits, and funding for services) Concerns about availability/quality of appropriate services/ support in general Specific concerns about education/educational services Issues relating to adults with ASD 35. We have had to go to some extraordinary lengths to secure our son's future....it has exhausted our health & finances. There should be more support for parents dealing with such a severe condition that seems to be on the increase. Most parents won't know how to access the help or even have the energy to go out & get it. Social services are stretched to the limit but there should be a hub of information. Once they leave school it is a mine field.....most parents I know are not given enough options for their young adult child moving into the adult world. There seems to be no provision of continued education after they leave school....they may be 18 by age and legally they're seen as an adult but they are leaving at a different mental age and I have found their education ceases. If they were tested to establish their mental age it would be noticed that they should still be getting educational input or at least some input. It's a bit like taking a 10 year old out of school and expecting them to just get on with it in the world. People continue to learn no matter what conditions they have, they shouldn't just stop getting support and learning input.
Specific concerns about education/educational services Concerns about availability/quality of appropriate services/ support in general 36. Large mainstream Primary schools are not equipped to deal with ASD/Asperger's, dumping these kids into a class of 27 other kids with no classroom assistance is not inclusion, the amount of phone calls, notes and issues coupled with meetings, IEPs, Child Planning Meetings is soul destroying especially when often the people who are meant to be there to help don't seem to grasp the basics about Autism and have to be reminded continually, to look for the triggers and not just the undesired behaviour itself. My son is intelligent and would not be put into a Special school. The Autism units locally are full but would be a better option as the staff know what they are doing. In his mainstream school the teachers have 45mins of optional info. What on earth can they gain from that to prepare them for 6 hours a day with our kids? If they chose to do it. We have a long way to go in society before people with Autism and their carers are treated equally. There is a consultation in [Local Authority Council] over local strategy and not one person on the Consultation is an expert in Autism.
Diagnostic Issues (e.g. problems with getting an initial diagnosis) Specific concerns about education/educational services Concerns about financial issues related to support (including benefits, and funding for services) Concerns about availability/quality of appropriate services/ support in general Social issues (including difficulties with socialising, maintaining employment, or any forensic history) Impact on the family

37. It took until my son was 12 to get a diagnosis despite numerous visits to doctors and psychology services. Due to poor understanding of his condition main stream school is a major challenge for him and I believe the only reason he copes at all is because I m a teacher in the school he attends. Lack of funding also means his support is sporadic. If I did not have control over him (and this often results in me being physically hurt) he would be on the streets causing chaos and most certainly be last of the youth justice system; in fact despite my control he has in a number of occasions been close to attending youth justice. Support for siblings is also very poor, they need more support to understand why their brother behaves the way he does.
Concerns about availability/quality of appropriate services/ support in general Anxiety/Stress in carers day-to-day
38. In my experience when dealing with specialists either in education, social work, the health service, employment etc. most do not have an understanding of ASD or its impact on the family or carer. There needs to be a much greater awareness amongst those who have contact with ASD people and their carers of the enormous psychological stress the carers’ experience. Carers have a key role in the well-being of the ASD person, although they are rarely listened to when the service providers are assessing and drawing up their plans for support. The majority of support workers, however well intentioned, are operating at a low level of understanding. In addition are low paid and consequently do not stay in the job to have any lasting impact. This cannot be beneficial to ASD individuals, who need stability and routine.
Specific concerns about education/educational services
39. I would just like to add that we have really struggled to find suitable educational facilities for our son locally. He was heavily supported in mainstream primary school and has just started at a special school 40 miles away (daily transport there and back provided by myself). It took us almost 18 months to convince the education authority that he deserved a place in this more specialised environment and eventually they offered a place. We were turned down previously as they said the school was full to capacity. There would seem to be a woeful lack of quality provision in our area.
Specific concerns about education/educational services Concerns about financial issues related to support (including benefits, and funding for services) Anxiety/Stress in carers education Impact on the family
40. I would like the education system to review their summer holiday schedule. 7 weeks over the summer is too long for everyone. Even those who have normally developing children, say it is too long for the children to have no structure in their lives. It’s a financial drain, but most importantly, it simply is not good for the children. In England the holidays are 6 weeks. This is quite long enough. Also, there seem to be a constant stream of holidays over the year. In fact there isn't one single month in the whole year, where there are no days of from one holiday or another. Added to the volume of training days for the teachers, it is a constant strain on our resources; mentally, physically and financially. My partner is so tired he is dropping to part time work next month so things are just going to get harder. Also, summer support is lacking. [Charity] provided some summer camps but they were not suitable for a severely Autistic boy - mainly high functioning. We tried one day and it was not possible for my son to attend further. We do get Direct Payment and pay for cover for him, but managing the Direct Payment is also a bit draining. I think what I’m saying is we don't feel we can go on much longer with the situation we live in. I worry also for the mental health of my other son.
Anxiety/Stress in carers day-to-day Impact on family Issues relating to females with ASD Concerns about financial issues related to support (including benefits, and funding for services) 41. I feel my long-term impact has had a major impact all areas of our lives. Where I have been pro-active in the past I am now at the stage of our lives tired, unhealthy , in need of a break from having to organising every aspect of my daughter’s life and future. Caring has impacted on all the family but having to deal with all the other people in my daughter’s life very tiring. The constant worry about benefit changes, future forms and face-to-face assessments fill me worry as my daughter can’t cope with this so I am left worrying how to cope. Getting older and not having a quality of life that most people have is unfair. I feel no one wants to help and address issues that are impacting on families with Autism.
Specific concerns about education/educational services Comments about the research
42. When is the UK going to follow the USA and Canada and fully endorse ABA as the way ahead for individuals with ASD? See Autism speaks webpages for North American endorsement! Sorry if some of my responses sound 'strong' but these agencies have been no use to me at all, http://www.scottishautism.org/family-and-professional-support/ http://www.autism.org.uk/living-with-autism.aspx http://www.autismnetworkscotland.org.uk/ the only ones that really help are www.bacb.com (for list of certified behaviour analysts) www.behavior.org (for up-to-date information on ABA) www.autismspeaks.org (for up-to-date information what is happening in the USA re autism, they are so far ahead that ABA-based interventions is now considered Treatment as Usual! And any good outcome research can be based on the assumption that the kids got ABA-based interventions. Please also note that ABA is not 'one intervention', it is the application of the science of behaviour analysis, and as such develops individually tailored methods to help our loved ones on the spectrum. If you really want to help I am asking you to do the following (everything else will just be another journal publication for you but not any good to us!!) Can you please stop the misrepresentation of ABA. Especially in Strathclyde! Can you please ensure that no autism conference is held without at least a number of BCBAs as keynote speakers! Can you please ensure that no autism report is written without input from BCBAs!
Concerns about availability/quality of appropriate services/ support in general 43. I would hope that this survey leads to better services for people in the Autistic Spectrum and that Autistic people should also be listened to as well as people who work with them. Autistic people have challenging behaviours but the people and organisations that work with them should be carefully monitored and understand the complexities of Autism. In the case of my son it was not a local but a national charity, [Charity] that let my son and myself down very badly.
Concerns about availability/quality of appropriate services/ support in general
44. I feel there isn't any real help out there and had to ask for help from CAHMS but feel it's not doing much use. And when I tried to find groups was told she had to be 14 which she is now. But she does not want to go as she is used to being on her own now and it scares her.
Anxiety/Stress in carers day-to-day Diagnostic Issues (e.g. problems with getting an initial diagnosis) 45. I feel exhausted most of the time with such a lack of sleep. (I average around 4-5 hours a day, for the past 4 years). Mentally, it can be hard at times, the repetitiveness of the questions and way of life. But, he is also unique and very loving. I knew when he was around 2 that something was wrong. I reported my worries to my doctor & health visitor at this point. It took a further 10 months of pressing for help/advice to finally get a diagnosis from a specialist. I was in the room 5 minutes, and they said my son was on the spectrum - moderate. What a long wait for something so obvious.
Concerns about availability/quality of appropriate services/ support in general Anxiety/Stress in carers day-to-day 46. Besides [Charity], I feel there is a big lack of support services for children, adults and carers of those with ASD. Once a diagnosis has been made, you are simply left to get on with things and go seek and find help and support which can be really difficult to do especially if you are isolated. You get shunted from pillar to post, have to constantly fight to get the support that is needed, then wait long periods of time to receive the support once you have found it. I feel that within mainstream education, professionals and society in general there is an unspoken discrimination towards people with an ASD and feel that people are very judgemental of you or person with ASD and you have to justify every action you do to help your child/person with ASD. There really needs to be a more centralised service specifically for people with ASD, where they can have access to one or more of the services they require.
Concerns about availability/quality of appropriate services/ support in general 47. From personal experience I feel many professionals involved with those such as my son are sadly lacking in autism expertise and this can lead to poor assessment/care pathway/placement and care management, there is no doubt this incompetence can have a very negative impact, yet it is very difficult to gain any level of accountability when things go very badly wrong.
Concerns about availability/quality of appropriate services/ support in general
48. Because Autism has no outward signs, I was astonished how little people understood or wanted to even know. I can compare the treatment my child with Diabetes has had and the care my child with Autism has had. I could name every professional my Diabetic son has ever seen in the 15 years of his Diabetes. I have lost count nor could tell you who 90% of the professionals my son with Autism has had contact with. There is no continuity of care, no core of named professionals responsible for your child and an unbelievable lack of professionalism when parents first raise concerns about Autism. The child psychiatric services in [Scottish City] were an absolute disgrace. Parents have to fight for scraps for their child. You are alone with your child. It's been horrendous, but you can't give up because you do it so your child has as happy and fulfilling life as they can.
Concerns about availability/quality of appropriate services/ support in general ASD individuals with complex needs Anxiety/Stress in carers day-to-day 49. At present I feel let down by autism services locally and nationally, due to the focus being on those with ASD and minimal (or no) learning disability. The stress caused by being an advocate for someone with complex needs comes more often from dealing with services than supporting loved ones. Providers need to look at how they focus their 'services' on those who are easiest to provide for... i.e. those who can travel independently and need minimal support to access services. Those with higher support needs seem to be the forgotten group now. There is also a need to remember that us carers are the voice of a very vulnerable group of individuals who are not able to advocate for themselves, and some very eloquent and vocal adults with autism cannot advocate on my son's behalf even with the best will in the world. Some services are consulting very articulate/independent adults who see themselves as the autistic voice, at the exclusion of some carers advocating for our children/young adults. Please can you remind service providers that services need to include voices from the whole spectrum!!
Concerns about availability/quality of appropriate services/ support in general Anxiety/Stress in carers day-to-day 50. Appropriate support needs to be available. Unfortunately for providers this requirement varies from person to person. What support there is out there is usually available only during working hours. It is considered that if you can work there is no problem. One partner works, the other cares, when the worker comes home, guess what, they end up in the carrying role, often for more than one person. The strain mentally, physically and financially takes its toll. You get a diagnosis, then you get left to get on with it. Services are not joined up. The whole system is like an autistic person!
Concerns about availability/quality of appropriate services/ support in general Anxiety/Stress in individuals with ASD day-to-day Anxiety/Stress in carers day-to-day Impact on the family Issues relating to comorbidities 51. [Scottish City] Council, Education Board, Social Work and the NHS completely fail in their 'duty of care' for ASD children and adults. The stress this is putting on ASD sufferers and their families is intolerable and an utter disgrace! I have a well behaved teenaged son who wants to do well in life but without appropriate support for ASD, anxiety, related sensory issues and co-morbid disorders / illness this is being made impossible!
Specific concerns about education/educational services Concerns about financial issues related to support (including benefits, and funding for services) 52. The progress my son has made has been due to the use of ABA at home, the adoption of a number of ABA techniques at his school and the help from [Charity]. I remain astounded that this form of education is not available in schools in general and that there is no financial assistance for parents who wish to use it with their children. None of the other services available and provided by the council have had much, if any, impact on his understanding and learning.
Concerns about financial issues related to support (including benefits, and funding for services) Concerns about availability/quality of appropriate services/ support in general Impact on the family 53. As well as being a parent I am a head teacher in a special school where most of the children have a diagnosis of ASD and LD. I am concerned that funding is putting families under increasing pressure so that even the hard won services we fought for are under threat, and the future prospects on leaving school are much reduced. I worked previously in colleges and know how many courses have been removed and support whittled away. Even when we know what works, the funding is no longer there to provide the specialist services we need and people with ASD and their families are paying the price. As a local authority we will also see more young people in residential care as families buckle under the strain. I fear the clock may be turning backwards.
Issues relating to HFA Specific concerns about education/educational services Issues relating to females with ASD Concerns about availability/quality of appropriate services/ support in general Anxiety/Stress in individuals with ASD day-to-day Positive comments about the research 54. As a mother of a daughter with AS, I feel she is disadvantaged because she is so high functioning. It would appear that professionals and services assume that those who are, at face value, intelligent do not need much in the way of support. This is incorrect. I am pleased that you have asked about school attendance as I feel that the issue of school refusal and school exclusion is not being adequately recognised. I think it is a significant problem. My daughter had NO secondary education due to mental health problems and I see no adequate support to help young people with AS make a more successful transition to adulthood. Robust support is required from people who have a good understanding of ASD if outcomes are to be improved. Responsibility appears to continue to rest with the parents despite the fact that they are adults. When does parental responsibility end?
Specific concerns about education/educational services Anxiety/Stress in individuals with ASD day-to-day 55. There needs to be more suitable education establishments for children with ASD. There is a particular lack of provision with children who have academic ability but also have anxiety or sensory issues.
Specific concerns about education/educational services Diagnostic Issues (e.g. problems with getting an initial diagnosis) 56. A parent’s and child's quality of life would be greatly improved if there was better training for staff in education, better sanctions so it does not give them the power to do what they want, having health professionals listen when concerns are first raised about a child would also help so many more can get a diagnosis early enough so a child would benefit from early interventions. My son was diagnosed at the age of 7 after a huge battle by the time he was 7 he had been through 3 nursery and 1 primary school and was home educated for a year before we found the school he is in presently, which was fantastic until a temporary change in headship we are now at a stage if this becomes a permanent move then we will have to look at another establishment.
Specific concerns about education/educational services Anxiety/Stress in individuals with ASD education Anxiety/Stress in carers education 57. I feel mainstream schools have a long way to go before they really understand children with ASD. I am hoping he will get the support he needs in high school as on days he was not coping he was sent home which made my life very stressful as he then learned if he didn’t feel like being in school he let them think he was coping so he was sent home which has left him with no education over the last two years which I found very hard as he is a bright boy who will have to work really hard to catch up which will put too much stress on him and he then shuts down
Concerns about availability/quality of appropriate services/ support in general 58. The government and council think they have adequate help for carers etc. but there's none!!! Everything I've found out I've done myself via Internet.
Diagnostic Issues (e.g. problems with getting an initial diagnosis) Concerns about availability/quality of appropriate services/ support in general 59. The main problem of before and after diagnosis is there is very little help available and what there is nobody tells you about it you have to research and try and find things out for yourself. [Charity] is where we got most of our help from.
Issues relating to females with ASD Specific concerns about education/educational services Anxiety/Stress in individuals with ASD day-to-day 60. There needs to be an urgent look at educational provision for girls with ASD. The way exceptions are made to the presumption of mainstreaming is entirely reactive and girl’s more passive public presentation means they are always overlooked for specialist provision. Too many girls are ending up with mental health problems in addition to ASD due to this system. They are isolated by virtue of their ASD and then, within that, by their gender.
Specific concerns about education/educational services Anxiety/Stress in individuals with ASD day-to-day Issues relating to comorbidities 61. There needs to be more suitable education establishments for children with ASD. There is a particular lack of provision with children who have academic ability but also have anxiety or sensory issues.
Diagnostic Issues (e.g. problems with getting an initial diagnosis) Concerns about availability/quality of appropriate services/ support in general 62. It takes too long for a diagnosis. Support should be provided from the point it is noticed (particularly when the school is commenting on the child’s ability). SW intervention should be provided at an early stage to assist in ensuring people know and understand the support provision available.
Diagnostic Issues (e.g. problems with getting an initial diagnosis) Concerns about availability/quality of appropriate services/ support in general 63. Pathological Demand Avoidance is a distinct sub group of ASD and the education and handling guidelines required for PDA are different to those required for ASD. The postcode lottery for diagnosis and support for children with PDA must change. [Charity 1] recognises PDA - why is there no mention of it by [Charity 2]? I have always considered Scotland to be a world leader in medicine. It is shocking that PDA is not recognised.
Issues relating to comorbidities Concerns about availability/quality of appropriate services/ support in general Anxiety/Stress in individuals with ASD day-to-day Issues relating to adults with ASD Issues relating to HFA 64. I worked as a support worker with adults with Asperger’s and now as an independent advocate with people with mental health issues. There is very little provision for people with Asperger’s who also have a mental health disorder. Due to lack of appropriate facilities, vulnerable clients who have Asperger’s and are detained under the Mental Health Act are admitted to a general psychiatric admissions ward. Due to the fluctuating nature of an acute admissions ward, staffing levels and constant changes in every aspect of the environment this results in massive, traumatic pressure on the individual. There needs to be a more suitable place for people to go who are detained under the Mental Health Act and who are on the Autistic spectrum.
Specific concerns about education/educational services Social issues (including difficulties with socialising, maintaining employment, or any forensic history) 65. Bullying in schools has to be addressed and police have to take more measures in protecting children with disabilities. They have rights and they should be protected, my son can’t go outside and play because he gets bullied by the children in the neighbourhood, there is no clubs or sports for children with ASD to socialize. Children with ASD need to socialize with other children in order to develop social and communication skills.
Concerns about financial issues related to support (including benefits, and funding for services) Social issues (including difficulties with socialising, maintaining employment, or any forensic history) Issues relating to adults with ASD Issues relating to HFA 66. Fascinated that you aren't questioning the single biggest stressor: the manic dance we are tortured through with the benefits system which fails to provide ANY support for intelligent Aspies to get into work.
Anxiety/Stress in carers employment Concerns about financial issues related to support (including benefits, and funding for services)
67. My employment prospects are the biggest issue - rarely any jobs that can fit around caring, and part time jobs tend to be minimum wage and no prospects. He's worth every stress-filled, pull your hair out, penny pinching moment of it.
Concerns about availability/quality of appropriate services/ support in general 68. The care in this country, especially during and after diagnosis is shockingly poor. I have been given no information at all on the condition and am largely left to deal with this on my own or with my family.

*Positive comments about the research noted but not included in the thematic analysis.

Table 11.26 Comments from individuals with ASD: Number of respondents linking themes/sub-themes

Themes/ Sub-Themes:
2

3

4

5

6

7

1

3

2

3

3

2

1

2

-

1

1

2

1

0

3

-

-

1

3

2

0

4

-

-

-

1

1

1

5

-

-

-

-

2

1

6

-

-

-

-

-

1

Themes/Sub-Themes: (1) concerns about availability/quality of appropriate services/support in general; (2) provision of services for older adults; (3) services for those with comorbidities; (4) issues relating to diagnosis; (5) stress and anxiety related to day-to-day life; (6) stress and anxiety related to employment; (7) stress and anxiety related to education.

Table 11.27 Comments from parents/carers with ASD: Number of respondents linking themes/sub-themes


Themes/ Sub-Themes:

2

3

4

5

6

7

8

9

10

11

12

13

14

15

16
1 10 4 6 4 3 1 2 6 5 1 10 0 0 3 4
2
7 4 2 3 2 1 4 5 4 3 2 2 3 1
3

3 0 1 2 0 1 0 2 4 2 1 5 2
4


1 3 0 0 0 1 0 1 0 0 0 1
5



1 0 0 0 4 0 2 0 0 1 1
6




1 0 0 2 0 0 0 0 0 1
7





0 0 2 0 1 0 0 1 0
8






0 1 1 0 0 0 1 0
9







1 0 2 0 0 1 1
10








0 2 0 0 2 1
11









1 1 1 1 0
12










0 0 2 1
13











2 1 0
14












1 0
15













1

Themes/Sub-Themes: (1) concerns about availability/quality of appropriate services/support in general; (2) specific concerns about education/educational services; (3) concerns about financial issues related to support (including benefits, and funding for services); (4) services for adults with ASD; (5) services for HFA/Asperger's syndrome; (6) services for those with comorbidities/complex needs; (7) services for females with ASD; (8) positive comments about support or outcomes; (9) issues relating to diagnosis (e.g. problems with getting an initial diagnosis); (10) stress and anxiety experienced by individuals with ASD linked to day-to-day life or care; (11) stress and anxiety experienced by individuals with ASD linked to education; (12) stress and anxiety experienced by parents/carers of individuals with ASD linked to day-to-day life or care; (13) stress and anxiety experienced by parents/carers of individuals with ASD linked to employment; (14) stress and anxiety experienced by parents/carers of individuals with ASD linked to education; (15) impact on family; (16) social issues (including difficulties with socialising, maintaining employment, or any forensic history).

Chapter D.1 Average annual service use and cost for children with ASD

Table 11.28 Annual service use for children with ASD, by diagnosis (N=546)

Autism (N=135) Asperger’s/ HFA (N=190) Other ASDs (N=221)
Children with at least one contact Children with at least one contact Children with at least one contact
N % N % N %
Accommodation
Private household with parents or relatives 130 96.3% 188 99.1% 217 98.3%
Private household with partner or friends 0 0.0% 0 0.0% 0 0.0%
Private household alone 0 0.0% 0 0.0% 0 0.0%
Supported living accommodation 0 0.0% 0 0.0% 0 0.0%
Other 5 3.7% 2 0.9% 4 1.7%
Education
Educational facilities
None 7 5.2% 9 4.7% 14 6.3%
Mainstream school 56 41.5% 152 80.0% 118 53.4%
Further education college 0 0.0% 0 0.0% 0 0.0%
University 0 0.0% 0 0.0% 0 0.0%
Special unit/resource in mainstream school 34 25.2% 39 20.5% 57 25.8%
Special day school (general) 36 26.7% 7 3.7% 35 15.8%
Special day school ( ASD) 10 7.4% 4 2.1% 11 5.0%
Residential school 38 weeks (general) 1 0.7% 0 0.0% 0 0.0%
Residential school 52 weeks (general) 0 0.0% 0 0.0% 1 0.5%
Residential school 38 weeks ( ASD) 1 0.7% 1 0.5% 1 0.5%
Residential school 52 weeks ( ASD) 2 1.5% 0 0.0% 1 0.5%
Home education (as alternative to school) 2 1.5% 6 3.2% 7 3.2%
Other 2 1.5% 4 2.1% 0 0.0%
Educational support
None 24 17.8% 39 20.5% 43 19.5%
Educational psychologist 63 46.7% 81 42.6% 100 45.2%
School family worker 26 19.3% 36 18.9% 41 18.6%
Classroom assistant 92 68.1% 111 58.4% 145 65.6%
Specialist teacher 62 45.9% 57 30.0% 100 45.2%
Disability services 2 1.5% 1 0.5% 1 0.5%
School nurse 3 2.2% 1 0.5% 0 0.0%
School doctor 0 0.0% 1 0.5% 1 0.5%
After school club 6 4.4% 25 13.2% 24 10.9%
Other 2 1.5% 6 3.2% 2 0.9%
Exclusion
Exclusion (days) 4 3.0% 16 8.4% 15 6.8%
Health and Social Care
At school/college
Speech and language therapist 74 54.8% 45 23.7% 109 49.3%
Occupational therapist 41 30.4% 26 13.7% 45 20.4%
Physiotherapist 10 7.4% 4 2.1% 9 4.1%
Psychotherapist 2 1.5% 2 1.1% 5 2.3%

Table 11.29 Average annual service use for children with ASD, by diagnosis (N=546)

Autism (N=135) Asperger’s/ HFA (N=190) Other ASDs (N=221)
Total sample Children with at least one contact Total sample Children with at least one contact Total sample Children with at least one contact
Mean SD N % Mean SD Mean SD N % Mean SD Mean SD N % Mean SD
Education
Tuitions
Home tuitions (hours per week) 0.4 1.7 11 8.1% 4.6 4.1 0.4 2.8 11 5.8% 6.1 10.6 0.2 1.7 7 3.2% 7.6 6.4
Individual tuitions (not at home)(hours per week) 0.2 1.5 2 1.5% 11.5 4.9 0.2 1.6 11 5.8% 4.0 5.6 0.4 2.7 8 3.6% 9.7 11.3
Small group tuitions (not at home)(hours per week) 0.3 3.2 2 1.5% 22.0 19.8 0.2 0.8 12 6.3% 3.0 1.8 0.1 0.9 13 5.9% 2.5 3.1
Health and Social Care
Residential respite care
Residential care home (for children/adolescents) (days) 2.6 14.7 7 5.2% 50.6 45.0 0.0 0.0 0 0.0% 0.0 0.0 0.8 6.8 6 2.7% 30.7 30.3
Residential care home (for adults) (days) 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Foster care (days) 0.3 3.4 1 0.7% 40.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Inpatient care
Psychiatric hospital (days) 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.5 6.7 1 0.5% 100.0 0.0
Psychiatric ward in general hospital (days) 0.0 0.0 0 0.0% 0.0 0.0 1.3 17.4 1 0.5% 240.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
General medical ward (days) 0.2 0.8 5 3.7% 4.4 0.9 0.0 0.1 1 0.5% 2.0 0.0 0.2 2.0 5 2.3% 9.6 10.8
Hospital care in prison/secure/semi-secure unit (days) 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.1 1 0.5% 2.0 0.0
Outpatient care
Psychiatric outpatient 0.2 1.2 4 3.0% 6.0 4.3 0.5 2.3 16 8.4% 5.9 5.9 0.5 2.2 18 8.1% 6.2 5.2
Accident & Emergencies 0.3 1.0 12 8.9% 3.2 1.6 0.2 0.9 13 6.8% 2.9 2.3 0.2 0.9 21 9.5% 2.6 1.6
Other 2.0 4.7 36 26.7% 7.3 6.6 0.8 2.3 31 16.3% 4.6 3.8 1.2 2.9 53 24.0% 5.0 3.9
Community care
Psychiatrist 0.4 2.1 8 5.9% 6.5 5.9 1.2 8.2 20 10.5% 11.4 23.4 0.3 1.2 15 6.8% 4.1 2.3
Psychologist 0.5 1.8 16 11.9% 4.4 3.4 1.6 7.7 37 19.5% 8.3 15.9 1.2 4.1 34 15.4% 7.7 7.7
Individual counselling/therapy 2.7 23.0 2 1.5% 180.0 84.9 1.7 19.0 6 3.2% 55.3 100.6 0.3 2.3 5 2.3% 13.2 8.9
Group counselling/therapy 0.4 4.1 1 0.7% 48.0 0.0 1.5 19.0 3 1.6% 97.3 141.6 0.1 0.8 1 0.5% 12.0 0.0
General practitioner 1.3 3.3 33 24.4% 5.5 4.6 0.7 1.8 33 17.4% 4.1 2.4 1.2 3.2 49 22.2% 5.5 4.8
Community learning disability nurse 0.3 2.4 4 3.0% 11.5 9.0 0.2 2.9 2 1.1% 22.0 25.5 0.1 0.8 5 2.3% 4.4 3.4
Other community nurse 0.9 5.6 7 5.2% 17.7 18.6 0.2 2.0 5 2.6% 8.8 9.4 0.1 0.7 6 2.7% 3.3 2.4
Other community learning disability team member 0.1 0.9 2 1.5% 7.0 1.4 0.1 0.8 4 2.1% 5.0 3.5 0.1 0.8 3 1.4% 6.0 3.5
Community challenging behaviour team member 0.1 0.5 2 1.5% 4.0 2.8 0.0 0.1 1 0.5% 2.0 0.0 0.4 3.4 7 3.2% 12.2 16.2
Child development centre/community paediatrics 0.3 0.9 12 8.9% 3.0 1.3 0.3 1.3 15 7.9% 3.4 3.2 0.9 8.5 31 14.0% 6.6 22.2
Occupational therapist 1.9 7.6 21 15.6% 12.0 16.2 1.7 18.9 13 6.8% 24.5 70.9 0.4 1.4 25 11.3% 3.6 2.4
Speech and language therapist 3.5 10.7 27 20.0% 17.5 18.4 2.0 19.3 14 7.4% 27.7 68.1 2.0 6.8 39 17.6% 11.2 12.8
Physiotherapist 0.9 5.1 8 5.9% 15.0 16.0 0.1 0.8 5 2.6% 4.4 2.6 0.1 0.4 6 2.7% 2.3 0.8
Social worker 1.1 3.8 22 16.3% 6.9 7.0 0.3 1.6 13 6.8% 4.8 3.8 0.6 2.3 22 10.0% 6.3 4.2
Home help/home care worker 3.9 32.3 5 3.7% 104.2 147.8 0.0 0.1 1 0.5% 2.0 0.0 0.1 1.3 1 0.5% 20.0 0.0
Outreach worker/family support 3.8 13.5 14 10.4% 36.3 24.8 1.7 7.2 18 9.5% 18.0 16.4 0.9 5.8 7 3.2% 26.9 20.7
Befriender 1.3 9.2 5 3.7% 34.4 37.2 0.8 5.1 5 2.6% 28.8 15.3 0.3 3.1 4 1.8% 19.0 15.2
Day care centre 0.1 0.7 1 0.7% 8.0 0.0 0.1 0.8 2 1.1% 8.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Social club 2.7 10.2 10 7.4% 36.9 12.8 5.8 20.6 23 12.1% 47.8 39.2 2.0 8.5 15 6.8% 29.3 16.5
Play schemes 4.7 13.8 23 17.0% 27.5 22.3 2.4 13.8 13 6.8% 35.0 41.8 2.5 9.9 22 10.0% 24.8 21.1
Sheltered workshop 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Individual placement and support 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Holiday schemes 3.2 14.6 14 10.4% 31.0 35.7 2.0 13.3 14 7.4% 26.9 43.2 2.2 12.1 23 10.4% 21.0 32.3
Child-minder 0.7 4.6 5 3.7% 18.0 17.7 0.7 4.4 9 4.7% 15.7 13.9 0.7 5.3 9 4.1% 18.0 20.6
Other 1.1 7.4 3 2.2% 49.3 10.1 0.0 0.0 0 0.0% 0.0 0.0 1.6 16.8 4 1.8% 88.0 102.9

Table 11.30 Average annual service cost for children with ASD, by diagnosis (£, 2013/14) (N=546)

Autism (N=135) Asperger’s/ HFA (N=190) Other ASDs (N=221)
Total sample Children with at least one contact Total sample Children with at least one contact Total sample Children with at least one contact
Mean SD N % Mean SD Mean SD N % Mean SD Mean SD N % Mean SD
Accommodation
Private household with parents or relatives 0 0 130 96.3% 0 0 0 0 188 99.1% 0 0 0 0 217 98.3% 0 0
Private household with partner or friends 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Private household alone 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Supported living accommodation 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Other 553 4,468 5 3.7% 14,742 19,937 38 1,181 2 0.9% 3,185 10,767 58 1,447 4 1.7% 2,396 8,854
Total: Accommodation 553 4,468 5 3.7% 14,742 19,937 38 1,181 2 0.9% 3,185 10,767 58 1,447 4 1.7% 2,396 8,854
Education
Educational facilities
None 0 0 7 5.2% 0 0 0 0 9 4.7% 0 0 0 0 14 6.3% 0 0
Mainstream school 0 0 56 41.5% 0 0 0 0 152 80.0% 0 0 0 0 118 53.4% 0 0
Further education college 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
University 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Special unit/resource in mainstream school 1,645 253 34 25.2% 6,531 1,494 1,044 161 39 20.5% 5,087 1,876 1,691 200 57 25.8% 6,556 1,501
Special day school (general) 6,969 1,016 36 26.7% 26,135 4,314 829 328 7 3.7% 22,510 8,588 3,761 608 35 15.8% 23,750 6,344
Special day school ( ASD) 1,624 520 10 7.4% 21,923 7,076 505 258 4 2.1% 23,979 6,851 1,302 388 11 5.0% 26,158 4,131
Residential school 38 weeks (general) 402 402 1 0.7% 54,262 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Residential school 52 weeks (general) 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 778 778 1 0.5% 172,016 0
Residential school 38 weeks ( ASD) 804 804 1 0.7% 108524 0 286 286 1 0.5% 54,262 0 491 491 1 0.5% 108,524 0
Residential school 52 weeks ( ASD) 1,911 1,420 2 1.5% 129,012 60,817 0 0 0 0.0% 0 0 778 778 1 0.5% 172,016 0
Home education (as alternative to school) 0 0 2 1.5% 0 0 0 0 6 3.2% 0 0 0 0 7 3.2% 0 0
Other 0 0 2 1.5% 0 0 0 0 4 2.1% 0 0 0 0 0 0.0% 0 0
Sub-total: Educational facilities 13,355 1,953 83 61.5% 21,722 25,638 2,664 506 50 26.3% 10,123 10,516 8,802 1,327 105 47.5% 18,526 25,321
Educational support a
None 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Educational psychologist 3,216 307 61 45.2% 7,117 459 2,842 251 78 41.1% 6,923 902 3,079 237 97 43.9% 7,016 704
School family worker 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Classroom assistant 1,441 225 34 25.2% 5,722 1,551 2,851 225 93 48.9% 5,824 1,516 2,099 200 78 35.3% 5,948 1,458
Specialist teacher 273 112 6 4.4% 6,149 1,369 265 93 8 4.2% 6,289 1,186 258 86 9 4.1% 6,335 1,118
Disability services 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
School nurse 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
School doctor 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
After school club 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Other 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Sub-total: Educational support 4,930 419 77 57.0% 8,644 3,043 5,958 379 123 64.7% 9,203 3,476 5,437 348 132 59.7% 9,102 3,365
Tuitions
Home tuitions (hours per week) 506 196 11 8.1% 6,207 5,532 480 277 11 5.8% 8,296 14,289 324 154 7 3.2% 10,237 8,626
Individual tuitions (not at home)(hours per week) 230 170 2 1.5% 15,548 6,692 309 155 11 5.8% 5,340 7,530 475 247 8 3.6% 13,133 15,257
Small group tuitions (not at home)(hours per week) 169 142 2 1.5% 11,440 10,295 91 429 12 6.3% 1,441 1,018 77 33 13 5.9% 1,310 1,614
Sub-total: Tuitions 906 292 14 10.4% 8,732 6,723 880 328 28 14.7% 5,975 10,558 877 300 25 11.3% 7,750 11,266
Exclusion
Exclusion (days) 0 0 4 3.0% 0 0 0 0 16 8.4% 0 0 0 0 15 6.8% 0 0
Total: Education 19,191 1,955 116 85.9% 22,334 23,030 9,502 651 146 76.8% 12,366 8,327 15,115 1,327 184 83.3% 18,155 20,308
Health and Social Care
At school/college a
Speech and language therapist 1,928 156 72 53.3% 3,615 214 838 110 45 23.7% 3,539 399 1,721 122 106 48.0% 3,588 303
Occupational therapist 1,065 142 40 29.6% 3,595 288 460 87 25 13.2% 3,494 504 692 96 43 19.5% 3,555 388
Physiotherapist 95 29 10 7.4% 1,284 214 21 12 3 1.6% 1,352 0 55 18 9 4.1% 1,352 0
Psychotherapist 39 27 2 1.5% 2,600 0 27 19 2 1.1% 2,600 0 53 24 5 2.3% 2,340 581
Sub-total: Health and social care at school/college 3,127 257 81 60.0% 5,211 1,982 1,347 165 58 30.5% 4,411 1,822 2,521 186 115 52.0% 4,845 1,851
Residential respite care
Residential care home (fo children/adolescents) (days) 1,122 543 7 5.2% 21,645 19,279 0 0 0 0.0% 0 0 356 195 6 2.7% 13,125 12,978
Residential care home (for adults) (days) 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Foster care (days) 30 30 1 0.7% 4,000 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Sub-total: Residential respite care 1,152 544 8 5.9% 19,439 18,907 0 0 0 0.0% 0 0 356 195 6 2.7% 13,125 12,978
Inpatient care
Psychiatric hospital (days) 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 278 278 1 0.5% 61,400 0
Psychiatric ward in general hospital (days) 0 0 0 0.0% 0 0 776 776 1 0.5% 147,360 0 0 0 0 0.0% 0 0
General medical ward (days) 215 95 5 3.7% 5,802 0 9 9 1 0.5% 1,674 0 94 46 5 2.3% 4,151 2,261
Hospital care in prison/secure/semi-secure unit (days) 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 9 9 1 0.5% 1,936 0
Sub-total: Inpatient care 215 95 5 3.7% 5,802 0 784 776 2 1.1% 74,517 103,016 380 281 7 3.2% 12,013 21,871
Outpatient care 0.0%
Psychiatric outpatient 48 28 4 3.0% 1,626 1,171 134 46 16 8.4% 1,592 1,589 137 41 18 8.1% 1,686 1,402
Accident & Emergencies 38 12 12 8.9% 428 214 27 9 13 6.8% 395 304 33 8 21 9.5% 347 212
Other 359 77 36 26.7% 1,346 218 141 32 31 16.3% 862 133 227 37 53 24.0% 946 108
Sub-total: Outpatient care 445 84 42 31.1% 1,430 1,299 302 59 51 26.8% 1,124 1,251 397 58 69 31.2% 1,273 1,144
Community care
Psychiatrist 74 31 8 5.9% 1,252 914 303 150 20 10.5% 2,882 5,888 49 14 15 6.8% 716 381
Psychologist 76 26 16 11.9% 644 658 235 83 37 19.5% 1,209 2,380 137 33 34 15.4% 887 935
Individual counselling/therapy 178 140 2 1.5% 12,000 8,485 82 65 6 3.2% 2,600 4,731 14 7 5 2.3% 611 472
Group counselling/therapy 36 36 1 0.7% 4,800 0 108 100 3 1.6% 6,860 10,520 3 3 1 0.5% 600 0
General practitioner 52 14 33 24.4% 214 268 24 5 33 17.4% 140 88 46 9 49 22.2% 207 209
Community learning disability nurse 22 12 4 3.0% 736 333 16 16 2 1.1% 1,531 2,080 7 4 5 2.3% 327 275
Other community nurse 58 36 7 5.2% 1,120 1,554 24 14 5 2.6% 917 865 9 4 6 2.7% 342 229
Other community learning disability team member 4 3 2 1.5% 259 52 3 2 4 2.1% 133 120 1 1 3 1.4% 94 48
Community challenging behaviour team member 3 2 2 1.5% 182 153 0 0 1 0.5% 74 0 21 13 7 3.2% 650 930
Child development centre/community paediatrics 83 25 12 8.9% 930 418 83 28 15 7.9% 1,049 977 286 177 31 14.0% 2,040 6,878
Occupational therapist 47 16 21 15.6% 303 372 57 47 13 6.8% 832 2,430 14 4 25 11.3% 121 125
Speech and language therapist 71 20 27 20.0% 355 409 51 36 14 7.4% 689 1,759 50 12 39 17.6% 286 331
Physiotherapist 17 8 8 5.9% 285 243 3 1 5 2.6% 96 32 1 1 6 2.7% 45 19
Social worker 69 21 22 16.3% 422 477 19 6 13 6.8% 272 210 34 10 22 10.0% 340 333
Home help/home care worker 298 190 5 3.7% 8,039 9,263 1 1 1 0.5% 209 0 9 9 1 0.5% 2,088 0
Outreach worker/family support 257 93 14 10.4% 2,475 2,484 186 99 18 9.5% 1,965 4,144 41 21 7 3.2% 1,290 1,328
Befriender 21 12 5 3.7% 562 505 15 8 5 2.6% 577 361 4 2 4 1.8% 198 95
Day care centre 16 16 1 0.7% 2,176 0 9 6 2 1.1% 816 385 0 0 0 0.0% 0 0
Social club 21 7 10 7.4% 286 79 47 12 23 12.1% 390 301 15 4 15 6.8% 220 124
Play schemes 48 12 23 17.0% 284 216 32 14 13 6.8% 472 635 28 7 22 10.0% 277 201
Sheltered workshop 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Individual placement and support 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Holiday schemes 112 60 14 10.4% 1,078 1,951 26 14 14 7.4% 348 656 327 148 23 10.4% 3,139 6,237
Child-minder 61 37 5 3.7% 1,649 1,730 62 25 9 4.7% 1,304 1,038 70 35 9 4.1% 1,711 2,058
Other 16 11 3 2.2% 705 556 0 0 0 0.0% 0 0 20 13 4 1.8% 1,122 1,002
Sub-total: Community care 1,638 319 80 59.3% 2,765 4,494 1,387 495 121 63.7% 2,177 8,466 1,184 248 121 54.8% 2,163 4,764
Total: Health and social care 6,577 751 114 84.4% 7,788 8,990 3,819 1,289 143 75.3% 5,075 20,338 4,839 464 171 77.4% 6,255 7,260
Total: Accommodation, education, and health and social care 26,321 2,359 123 91.1% 28,877 27,387 13,360 1,450 165 86.9% 15,365 20,679 20,013 1,612 200 90.7% 22,075 24,179

Note: Total costs may not add up due to a difference in the number of observations. a Cost of educational support not included in the establishment costs

Chapter D.2 Average annual service use and cost for adults with ASD

Table 11.31 Annual service use for adults with ASD, by diagnosis (N=404)


Autism (N=82) Asperger’s/ HFA (N=236) Other ASDs (N=86)
Adults with at least one contact Adults with at least one contact Adults with at least one contact
N % N % N %
Accommodation
Private household with parents or relatives 45 54.9% 112 47.5% 56 65.1%
Private household with partner or friends 2 2.4% 47 19.9% 4 4.7%
Private household alone 7 8.5% 53 22.5% 8 9.3%
Supported living accommodation 11 12.8% 10 4.1% 12 14.0%
Other 10 11.6% 5 2.2% 5 5.8%
Education
Educational facilities
None 45 54.9% 154 65.3% 43 50.0%
Mainstream school 3 3.7% 26 11.0% 11 12.8%
Further education college 0 0.0% 0 0.0% 0 0.0%
University 2 2.4% 24 10.2% 3 3.5%
Special unit/resource in mainstream school 1 1.2% 5 2.1% 11 12.8%
Special day school (general) 8 9.8% 0 0.0% 5 5.8%
Special day school ( ASD) 5 6.1% 0 0.0% 2 2.3%
Residential school 38 weeks (general) 0 0.0% 0 0.0% 1 1.2%
Residential school 52 weeks (general) 0 0.0% 0 0.0% 0 0.0%
Residential school 38 weeks ( ASD) 1 1.2% 0 0.0% 0 0.0%
Residential school 52 weeks ( ASD) 0 0.0% 0 0.0% 0 0.0%
Home education (as alternative to school) 0 0.0% 1 0.4% 1 1.2%
Other 2 2.4% 3 1.3% 1 1.2%
Educational support
None 50 61.0% 178 75.4% 47 54.7%
Educational psychologist 7 8.5% 4 1.7% 13 15.1%
School family worker 5 6.1% 5 2.1% 17 19.8%
Classroom assistant 19 23.2% 13 5.5% 25 29.1%
Specialist teacher 17 20.7% 14 5.9% 14 16.3%
Disability services 8 9.8% 21 8.9% 9 10.5%
School nurse 0 0.0% 0 0.0% 0 0.0%
School doctor 0 0.0% 2 0.8% 0 0.0%
After school club 1 1.2% 0 0.0% 3 3.5%
Other 1 1.2% 6 2.5% 1 1.2%
Exclusion
Exclusion (days) 0 0.0% 2 0.8% 0 0.0%
Health and Social Care
At school/college
Speech and language therapist 8 9.8% 2 0.8% 10 11.6%
Occupational therapist 5 6.1% 2 0.8% 2 2.3%
Physiotherapist 1 1.2% 0 0.0% 2 2.3%
Psychotherapist 2 2.4% 0 0.0% 1 1.2%

Table 11.32 Average annual service use for adults with ASD, by diagnosis (N=404)

Autism (N=82) Asperger’s/ HFA (N=236) Other ASDs (N=86)
Total sample Adults with at least one contact Total sample Adults with at least one contact Total sample Adults with at least one contact
Mean SD N % Mean SD Mean SD N % Mean SD Mean SD N % Mean SD
Education
Tuitions
Home tuitions (hours per week) 0.3 1.8 3 3.7% 7.3 7.1 0.1 0.5 8 3.4% 2.2 1.4 0.2 1.0 3 3.5% 4.7 3.2
Individual tuitions (not at home)(hours per week) 1.0 4.6 6 7.3% 13.9 11.4 0.1 0.4 8 3.4% 2.0 1.0 0.5 3.9 3 3.5% 15.3 17.4
Small group tuitions (not at home)(hours per week) 0.8 4.1 4 4.9% 16.8 9.4 0.1 0.7 4 1.7% 4.5 3.7 0.2 1.6 2 2.3% 8.5 9.2
Health and Social Care
Residential respite care
Residential care home (for children/adolescents) (days) 0.3 2.7 1 1.2% 24.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.6 4.3 2 2.3% 27.0 12.7
Residential care home (for adults) (days) 1.6 8.5 3 3.7% 42.7 17.0 0.1 2.2 1 0.4% 34.0 0.0 1.1 5.1 5 5.8% 18.8 12.1
Foster care (days) 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Inpatient care
Psychiatric hospital (days) 4.4 39.8 1 1.2% 360.0 0.0 1.7 23.1 2 0.8% 197.0 219.2 0.0 0.0 0 0.0% 0.0 0.0
Psychiatric ward in general hospital (days) 0.2 1.6 2 2.4% 9.0 7.1 0.5 8.1 2 0.8% 63.0 86.3 0.0 0.0 0 0.0% 0.0 0.0
General medical ward (days) 0.8 4.6 5 6.1% 12.4 15.8 0.1 1.0 6 2.5% 5.7 3.2 0.1 1.1 2 2.3% 6.0 5.7
Hospital care in prison/secure/semi-secure unit (days) 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Outpatient care
Psychiatric outpatient 0.6 1.8 11 13.4% 4.4 3.1 0.8 3.0 29 12.3% 6.9 5.5 0.2 1.2 4 4.7% 5.0 2.6
Accident & Emergencies 0.0 0.4 1 1.2% 4.0 0.0 0.2 0.9 14 5.9% 3.4 2.0 0.0 0.3 2 2.3% 2.0 0.0
Other 1.4 3.4 17 20.7% 6.7 4.6 0.9 4.3 32 13.6% 7.0 9.7 0.7 2.2 14 16.3% 4.5 3.5
Community care
Psychiatrist 0.5 1.1 15 18.3% 2.6 0.9 0.7 1.9 44 18.6% 3.7 2.9 0.6 1.4 15 17.4% 3.2 1.8
Psychologist 0.9 2.8 12 14.6% 5.9 4.8 1.5 6.0 35 14.8% 10.2 12.5 0.6 2.4 12 14.0% 4.5 5.0
Individual counselling/therapy 1.4 6.3 5 6.1% 22.2 15.2 1.1 5.7 19 8.1% 13.1 15.9 0.0 0.0 0 0.0% 0.0 0.0
Group counselling/therapy 0.0 0.0 0 0.0% 0.0 0.0 0.1 0.8 3 1.3% 7.3 1.2 0.4 2.2 3 3.5% 11.8 0.2
General practitioner 1.1 2.4 18 22.0% 5.1 2.6 2.1 3.9 76 32.2% 6.4 4.5 1.4 2.4 26 30.2% 4.5 2.2
Community learning disability nurse 0.8 2.1 13 15.9% 5.1 2.7 0.0 0.0 0 0.0% 0.0 0.0 0.6 2.6 7 8.1% 7.4 6.1
Other community nurse 0.5 2.3 7 8.5% 6.0 5.5 0.3 3.4 4 1.7% 16.5 23.7 0.4 2.6 5 5.8% 6.8 9.7
Other community learning disability team member 0.0 0.3 2 2.4% 2.0 0.0 0.3 3.2 4 1.7% 18.1 20.0 0.3 1.4 3 3.5% 7.4 1.2
Community challenging behaviour team member 0.0 0.4 1 1.2% 4.0 0.0 0.0 0.3 1 0.4% 4.0 0.0 0.2 2.2 1 1.2% 20.0 0.0
Child development centre/community paediatrics 0.0 0.2 1 1.2% 2.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.2 1 1.2% 2.0 0.0
Occupational therapist 0.2 1.0 4 4.9% 4.0 2.8 0.1 0.8 8 3.4% 4.2 0.7 0.1 0.6 4 4.7% 2.5 1.0
Speech and language therapist 0.2 0.8 7 8.5% 2.6 1.0 0.1 0.6 3 1.3% 4.7 3.1 1.5 7.0 8 9.3% 16.5 17.9
Physiotherapist 0.1 0.9 3 3.7% 4.0 3.5 0.3 3.3 4 1.7% 16.6 22.5 0.2 1.3 2 2.3% 8.3 3.2
Social worker 2.2 5.3 27 32.9% 6.7 7.6 1.2 5.1 32 13.6% 9.0 11.0 1.3 3.3 23 26.7% 5.0 4.8
Home help/home care worker 16.6 64.4 7 8.5% 194.5 125.2 5.8 38.1 7 3.0% 195.3 116.6 2.3 21.0 1 1.2% 194.9 0.0
Outreach worker/family support 1.2 7.0 4 4.9% 25.5 22.0 11.6 49.3 24 10.2% 114.0 112.4 6.4 40.6 6 7.0% 91.6 136.4
Befriender 1.7 8.6 3 3.7% 45.3 4.6 1.3 9.7 6 2.5% 51.3 36.8 0.7 5.6 2 2.3% 31.3 27.3
Day care centre 6.1 20.8 10 12.2% 50.1 37.8 0.8 11.7 1 0.4% 180.0 0.0 10.2 30.1 11 12.8% 79.4 40.4
Social club 3.8 11.3 10 12.2% 31.3 13.6 3.2 13.9 20 8.5% 38.3 31.0 6.3 21.4 11 12.8% 49.2 39.7
Play schemes 4.5 37.3 2 2.4% 186.0 212.1 0.0 0.1 1 0.4% 2.0 0.0 0.7 5.4 2 2.3% 32.0 22.6
Sheltered workshop 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.1 0.6 2 2.3% 4.0 0.0
Individual placement and support 1.2 7.4 2 2.4% 48.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 1.7 8.9 3 3.5% 48.0 0.0
Holiday schemes 0.0 0.2 1 1.2% 2.0 0.0 0.1 1.0 3 1.3% 6.7 6.4 0.0 0.2 1 1.2% 2.0 0.0
Child-minder 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Other 3.2 26.6 3 3.7% 88.0 131.9 0.3 3.5 2 0.8% 32.0 28.3 0.0 0.0 0 0.0% 0.0 0.0

Table 11.33 Average annual service cost for adults with ASD, by diagnosis (£, 2013/14) (N=404)

Autism (N=82) Asperger’s/ HFA (N=236) Other ASDs (N=86)
Total sample Adults with at least one contact Total sample Adults with at least one contact Total sample Adults with at least one contact
Mean SD N % Mean SD Mean SD N % Mean SD Mean SD N % Mean SD
Accommodation
Private household with parents or relatives 0 0 0 0.0% 0 0 0 0 112 47.5% 0 0 0 0 56 65.1% 0 0
Private household with partner or friends 0 0 45 54.9% 0 0 0 0 47 19.9% 0 0 0 0 4 4.7% 0 0
Private household alone 0 0 2 2.4% 0 0 0 0 53 22.5% 0 0 0 0 8 9.3% 0 0
Supported living accommodation 6,152 16,148 11 12.8% 48,048 0 1,975 9,557 10 4.1% 48,048 0 6,760 16,804 12 14.0% 48,048 0
Other 85 1,035 10 11.6% 684 2,918 839 12,729 5 2.2% 38,275 85,915 423 3,925 5 5.8% 7,280 16,279
Total: Accommodation 7,409 1,975 13 15.9% 46,625 7,049 2,814 1,048 11 4.6% 61,132 45,234 7,183 1,851 13 15.2% 47,158 3,219
Education
Educational facilities
None 0 0 45 54.9% 0 0 0 0 154 65.3% 0 0 0 0 43 50.0% 0 0
Mainstream school 0 0 3 3.7% 0 0 0 0 26 11.0% 0 0 0 0 11 12.8% 0 0
Further education college 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
University 0 0 2 2.4% 0 0 0 0 24 10.2% 0 0 0 0 3 3.5% 0 0
Special unit/resource in mainstream school 89 89 1 1.2% 7,280 0 134 62 5 2.1% 6,309 2,170 720 216 11 12.8% 5,625 1,901
Special day school (general) 2,339 817 8 9.8% 23,979 6,343 0 0 0 0.0% 0 0 1,593 696 5 5.8% 27,404 0
Special day school ( ASD) 1,504 673 5 6.1% 24,664 6,128 0 0 0 0.0% 0 0 637 448 2 2.3% 27,404 0
Residential school 38 weeks (general) 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 1,262 1,262 1 1.2% 108,524 0
Residential school 52 weeks (general) 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Residential school 38 weeks ( ASD) 1,323 1,323 1 1.2% 108,524 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Residential school 52 weeks ( ASD) 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Home education (as alternative to school) 0 0 0 0.0% 0 0 0 0 1 0.4% 0 0 0 0 1 1.2% 0 0
Other 0 0 2 2.4% 0 0 0 0 3 1.3% 0 0 0 0 1 1.2% 0 0
Sub-total: Educational facilities 5,255 1,630 15 18.3% 28,730 23,180 134 62 5 2.1% 6,309 2,170 4,212 1,474 19 22.1% 19,065 24,167
Educational support a
None 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Educational psychologist 438 191 5 6.1% 7,176 0 61 43 2 0.8% 7,176 0 960 262 12 14.0% 6,877 1,036
School family worker 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Classroom assistant 409 169 6 7.3% 5,590 1,732 256 84 9 3.8% 6,708 0 975 241 15 17.4% 5,590 1,637
Specialist teacher 164 115 2 2.4% 6,708 0 246 81 9 3.8% 6,460 745 156 110 2 2.3% 6,708 0
Disability services 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
School nurse 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
School doctor 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
After school club 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Other 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Sub-total: Educational support 1,010 303 11 13.4% 7,531 2,656 563 135 18 7.6% 7,381 2,423 2,091 430 21 24.4% 8,561 3,081
Tuitions
Home tuitions (hours per week) 363 265 3 3.7% 9,915 9,592 100 41 8 3.4% 2,958 1,840 220 145 3 3.5% 6,309 4,346
Individual tuitions (not at home)(hours per week) 1,377 690 6 7.3% 18,815 15,441 91 35 8 3.4% 2,675 1,418 723 567 3 3.5% 20,731 23,508
Small group tuitions (not at home)(hours per week) 425 233 4 4.9% 8,710 4,866 40 24 4 1.7% 2,340 1,922 103 91 2 2.3% 4,420 4,780
Sub-total: Tuitions 2,164 825 10 12.2% 17,748 13,977 231 71 16 6.8% 3,401 2,629 1,046 596 6 7.0% 14,993 16,379
Exclusion 0.0%
Exclusion (days) 0 0 0 0.0% 0 0 0 0 2 0.8% 0 0 0 0 0 0.0% 0 0
Total: Education 8,430 2,057 26 31.7% 26,587 24,932 927 183 32 13.6% 6,838 4,240 7,349 1,644 33 38.4% 19,151 19,600
Health and Social Care
At school/college a
Speech and language therapist 266 105 6 7.3% 3,640 0 31 22 2 0.8% 3,640 0 360 116 9 10.5% 3,438 607
Occupational therapist 133 76 3 3.7% 3,640 0 15 15 1 0.4% 3,640 0 63 47 2 2.3% 2,730 1,287
Physiotherapist 16 16 1 1.2% 1,352 0 0 0 0 0.0% 0 0 24 17 2 2.3% 1,014 478
Psychotherapist 63 45 2 2.4% 2,600 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Sub-total: Health and social care at school/college 479 202 6 7.3% 6,552 2,569 46 34 2 0.8% 5,460 2,574 447 129 11 12.8% 3,493 739
Residential respite care
Residential care home (for children/adolescents) (days) 125 125 1 1.2% 10,272 0 0 0 0 0.0% 0 0 269 199 2 2.3% 11,556 5,448
Residential care home (for adults) (days) 320 192 3 3.7% 8,747 3,487 30 30 1 0.4% 6,970 0 224 114 5 5.8% 3,854 2,487
Foster care (days) 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Sub-total: Residential respite care 445 227 4 4.9% 9,128 2,948 30 30 1 0.4% 6,970 0 493 226 7 8.1% 6,055 4,816
Inpatient care
Psychiatric hospital (days) 1,541 1,541 1 1.2% 126,360 0 586 527 2 0.8% 69,147 76,940 0 0 0 0.0% 0 0
Psychiatric ward in general hospital (days) 77 62 2 2.4% 3,159 2,482 187 184 2 0.8% 22,113 30,280 0 0 0 0.0% 0 0
General medical ward (days) 219 109 5 6.1% 3,592 2,182 132 53 6 2.5% 5,186 0 74 62 2 2.3% 3,194 2,817
Hospital care in prison/secure/semi-secure unit (days) 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Sub-total: Inpatient care 1,837 1,542 8 9.8% 18,830 43,491 905 559 10 4.2% 21,364 37,969 74 62 2 2.3% 3,194 2,817
Outpatient care
Psychiatric outpatient 59 20 11 13.4% 436 307 85 19 29 12.3% 690 554 23 13 4 4.7% 500 258
Accident & Emergencies 7 7 1 1.2% 540 0 27 8 14 5.9% 463 269 6 4 2 2.3% 270 0
Other 223 61 17 20.7% 1,077 762 154 45 32 13.6% 1,135 1,587 118 38 14 16.3% 726 578
Sub-total: Outpatient care 288 65 24 29.3% 985 712 266 52 57 24.2% 1,102 1,324 148 41 18 20.9% 706 548
Community care
Psychiatrist 94 25 15 18.3% 511 242 136 29 44 18.6% 731 794 89 26 15 17.4% 508 364
Psychologist 112 41 12 14.6% 765 688 207 54 35 14.8% 1,395 1,756 81 34 12 14.0% 583 657
Individual counselling/therapy 61 33 5 6.1% 1,008 811 51 18 19 8.1% 640 761 0 0 0 0.0% 0 0
Group counselling/therapy 0 0 0 0.0% 0 0 9 5 3 1.3% 733 115 27 17 3 3.5% 783 332
General practitioner 33 8 18 22.0% 148 67 93 16 76 32.2% 287 364 45 10 26 30.2% 148 115
Community learning disability nurse 56 18 13 15.9% 356 251 0 0 0 0.0% 0 0 49 25 7 8.1% 599 626
Other community nurse 12 6 7 8.5% 138 124 11 9 4 1.7% 669 870 16 11 5 5.8% 281 337
Other community learning disability team member 2 1 2 2.4% 72 3 11 8 4 1.7% 669 738 8 5 3 3.5% 220 76
Community challenging behaviour team member 1 1 1 1.2% 74 0 1 1 1 0.4% 148 0 10 10 1 1.2% 881 0
Child development centre/community paediatrics 8 8 1 1.2% 620 0 0 0 0 0.0% 0 0 7 7 1 1.2% 620 0
Occupational therapist 4 2 4 4.9% 81 42 3 1 8 3.4% 102 49 3 1 4 4.7% 64 0
Speech and language therapist 7 3 7 8.5% 80 55 1 1 3 1.3% 76 29 43 22 8 9.3% 466 542
Physiotherapist 3 2 3 3.7% 77 44 5 4 4 1.7% 321 343 4 3 2 2.3% 183 124
Social worker 132 36 27 32.9% 400 474 58 17 32 13.6% 425 598 67 19 23 26.7% 251 274
Home help/home care worker 4,688 2,753 7 8.5% 54,915 71,900 1,174 887 7 3.0% 39,565 74,181 1,305 1,305 1 1.2% 112,262 0
Outreach worker/family support 371 312 4 4.9% 7,608 11,910 1,058 316 24 10.2% 10,405 11,782 792 571 6 7.0% 11,353 18,257
Befriender 61 36 3 3.7% 1,680 336 39 21 6 2.5% 1,520 1,509 20 16 2 2.3% 851 728
Day care centre 1,141 432 10 12.2% 9,360 7,236 146 146 1 0.4% 34,560 0 1,651 551 11 12.8% 12,910 7,897
Social club 29 9 10 12.2% 235 102 26 8 20 8.5% 310 268 47 17 11 12.8% 369 298
Play schemes 34 31 2 2.4% 1,395 1,591 0 0 1 0.4% 30 0 6 4 2 2.3% 240 170
Sheltered workshop 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 5 4 2 2.3% 216 0
Individual placement and support 84 59 2 2.4% 3,456 0 0 0 0 0.0% 0 0 121 69 3 3.5% 3,456 0
Holiday schemes 0 0 1 1.2% 30 0 1 0 3 1.3% 50 48 0 0 1 1.2% 15 0
Child-minder 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Other 46 44 3 3.7% 1,255 2,033 11 11 2 0.8% 1,300 1,838 0 0 0 0.0% 0 0
Sub-total: Community care 6,978 2,845 54 65.9% 10,597 31,230 3,042 953 139 58.9% 5,165 18,823 4,397 1,547 56 65.1% 6,753 17,371
Total: Health and social care 10,028 3,179 58 70.7% 14,178 33,428 4,289 1,103 150 63.6% 6,748 20,893 5,559 1,576 64 74.4% 7,470 16,541
Total: Accommodation, education, and health and social care 25,824 4,256 66 80.5% 32,059 40,305 8,030 1,869 159 67.3% 11,929 34,164 20,091 3,053 71 82.7% 24,301 29,410

Note: Total costs may not add up due to a difference in the number of observations. a Cost of educational support not included in the establishment costs.

Chapter D.3 Average annual service use and cost for carers of people with ASD

Table 11.34 Average annual service use for carers of children with ASD, by diagnosis (N=520)

Autism (N=129) Asperger’s/ HFA (N=183) Other ASDs (N=208)
Total sample Carers with at least one contact Total sample Carers with at least one contact Total sample Carers with at least one contact
Mean SD N % Mean SD Mean SD N % Mean SD Mean SD N % Mean SD
Health and Social Care (carers)
Psychiatrist 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.4 1 0.5% 6.0 0.0 0.1 1.7 2 1.0% 14.0 14.1
Psychologist 0.0 0.0 0 0.0% 0.0 0.0 0.1 0.6 2 1.1% 5.0 4.2 0.1 1.2 3 1.4% 8.7 6.4
Individual counselling/therapy 0.1 1.5 1 0.8% 16.7 0.0 0.4 3.2 5 2.7% 14.7 14.0 0.3 3.4 3 1.4% 21.3 23.4
Group counselling/therapy 0.2 1.3 4 3.1% 6.0 4.9 0.4 3.8 4 2.2% 19.0 19.7 0.1 1.1 3 1.4% 7.3 7.6
General practitioner 0.1 1.1 1 0.8% 12.0 0.0 0.5 2.4 11 6.0% 7.8 6.6 0.5 3.2 8 3.8% 14.3 9.3
Physiotherapist 0.0 0.0 0 0.0% 0.0 0.0 0.1 0.9 1 0.5% 12.0 0.0 0.4 3.9 2 1.0% 39.0 12.7
Social worker 0.1 0.7 2 1.6% 6.0 0.0 0.1 0.6 2 1.1% 5.0 4.2 0.3 3.4 3 1.4% 20.0 24.3
Outreach worker 0.0 0.0 0 0.0% 0.0 0.0 0.2 1.9 2 1.1% 17.0 9.9 0.0 0.0 0 0.0% 0.0 0.0
Other 0.1 0.7 1 0.8% 8.0 0.0 0.3 1.9 5 2.7% 10.2 6.8 0.2 1.7 4 1.9% 12.4 2.4
Employment (carers)
Paid and unpaid work (hours/week) 17.2 13.6 87 67.4% 25.5 7.7 17.6 14.4 122 66.7% 26.4 8.9 16.3 14.8 127 61.1% 26.8 8.7

Table 11.35 Average annual service cost for carers of children with ASD, by diagnosis (£, 2013/14) (N=520)

Autism (N=129) Asperger’s/ HFA (N=183) Other ASDs (N=208)
Total sample Carers of children with at least one contact Total sample Carers of children with at least one contact Total sample Carers of children with at least one contact
Mean SD N % Mean SD Mean SD N % Mean SD Mean SD N % Mean SD
Health and Social Care (carers)
Psychiatrist 0 0 0 0.0% 0 0 6 6 1 0.5% 1,144 0 32 24 2 1.0% 3,337 1,755
Psychologist 0 0 0 0.0% 0 0 8 6 2 1.1% 690 585 17 12 3 1.4% 1,196 887
Individual counselling/therapy 6 6 1 0.8% 836 0 21 12 5 2.7% 784 651 15 12 3 1.4% 1,067 1,172
Group counselling/therapy 14 8 4 3.1% 444 307 42 28 4 2.2% 1,932 1,931 10 8 3 1.4% 700 794
General practitioner 4 4 1 0.8% 517 0 22 8 11 6.0% 366 309 23 10 8 3.8% 594 419
Physiotherapist 0 0 0 0.0% 0 0 2 2 1 0.5% 384 0 10 7 2 1.0% 989 448
Social worker 7 5 2 1.6% 477 26 3 2 2 1.1% 238 131 21 18 3 1.4% 1,472 1,905
Outreach worker 0 0 0 0.0% 0 0 5 4 2 1.1% 474 360 0 0 0 0.0% 0 0
Other 3 3 1 0.8% 400 0 14 7 5 2.7% 509 340 12 6 4 1.9% 622 122
Total: Health and social care (carers) 35 12 9 7.0% 498 229 123 34 28 15.3% 805 922 140 44 22 10.6% 1,327 1,541
Employment (carers)
Productivity loss a 4,444 458 72 55.8% 7,963 4,507 4,051 428 86 47.0% 8,621 5,659 3,673 342 97 46.6% 7,876 4,371
Total: Health and social care, employment (carers) 4,479 458 75 58.1% 7,704 4,651 4,175 431 97 53.0% 7,876 5,909 3,813 345 108 51.9% 7,344 4,646

Note: Total costs may not add up due to a difference in the number of observations. a Productivity loss of carers working less than full time.

Table 11.36 Average annual service use for carers of adults with ASD, by diagnosis (N=267)

Autism (N=72) Asperger’s/ HFA (N=129) Other ASDs (N=66)
Total sample Carers with at least one contact Total sample Carers with at least one contact Total sample Carers with at least one contact
Mean SD N % Mean SD Mean SD N % Mean SD Mean SD N % Mean SD
Health and Social Care (carers)
Psychiatrist 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Psychologist 0.3 2.0 2 2.8% 11.0 7.1 0.2 2.1 1 0.8% 24.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Individual counselling/therapy 0.3 2.1 1 1.4% 18.0 0.0 0.5 4.3 4 3.1% 15.5 21.7 0.0 0.0 0 0.0% 0.0 0.0
Group counselling/therapy 0.2 1.4 2 2.8% 7.0 7.1 0.3 1.8 3 2.3% 12.0 0.0 0.2 1.5 2 3.0% 7.0 7.1
General practitioner 0.2 1.4 1 1.4% 12.0 0.0 0.2 1.3 5 3.9% 6.0 3.5 0.1 0.7 1 1.5% 6.0 0.0
Physiotherapist 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Social worker 0.1 0.7 1 1.4% 6.0 0.0 0.1 1.1 2 1.6% 8.0 5.7 0.0 0.0 0 0.0% 0.0 0.0
Outreach worker 0.0 0.0 0 0.0% 0.0 0.0 0.1 0.7 1 0.8% 8.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Other 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0 0.0 0.0 0 0.0% 0.0 0.0
Employment (carers)
Paid and unpaid work (hours/week) 22.3 16.0 50 69.4% 32.1 6.9 19.1 15.9 82 63.6% 30.1 8.1 17.0 15.8 38 57.6% 29.5 7.9

Table 11.37 Average annual service cost for carers of adults with ASD, by diagnosis (£, 2013/14) (N=267)

Autism (N=72) Asperger’s/ HFA (N=129) Other ASDs (N=66)
Total sample Carers of children with at least one contact Total sample Carers of children with at least one contact Total sample Carers of children with at least one contact
Mean SD N % Mean SD Mean SD N % Mean SD Mean SD N % Mean SD
Health and Social Care (carers)
Psychiatrist 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Psychologist 42 33 2 2.8% 1,518 976 26 26 1 0.8% 3,312 0 0 0 0 0.0% 0 0
Individual counselling/therapy 13 13 1 1.4% 900 0 80 74 4 3.1% 2,575 4,684 0 0 0 0.0% 0 0
Group counselling/therapy 20 17 2 2.8% 704 701 23 14 3 2.3% 1,000 346 49 46 2 3.0% 1,604 1,974
General practitioner 5 5 1 1.4% 336 0 9 5 5 3.9% 235 169 4 4 1 1.5% 263 0
Physiotherapist 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Social worker 7 7 1 1.4% 495 0 9 7 2 1.6% 569 493 0 0 0 0.0% 0 0
Outreach worker 0 0 0 0.0% 0 0 1 1 1 0.8% 176 0 0 0 0 0.0% 0 0
Other 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0 0 0 0 0.0% 0 0
Total: Health and social care (carers) 86 48 6 8.3% 1,029 1,080 148 80 13 10.1% 1,469 2,591 53 46 3 4.5% 1,157 1,596
Employment (carers)
Productivity loss a 1,527 241 36 50.0% 3,053 1,913 2,351 386 49 38.0% 6,188 5,186 2,237 542 27 40.9% 5,469 5,481
Total: Health and social care, employment (carers) 1,612 244 41 56.9% 2,832 2,019 2,499 390 57 44.2% 5,655 5,155 2,290 540 30 45.5% 5,038 5,370

Note: Total costs may not add up due to a difference in the number of observations. a Productivity loss of carers working less than full time.

Chapter D.4 Average annual service costs per capita for people with ASD and their carers

Table 11.38 Average annual service costs per capita for children with ASD with ID and their carers, by age and place of residence (£, 2013/14)


(ages 0-1) (ages 2-4) (ages 5-11) (ages 12-15)
Living in private households with family Living in residential or foster care placement Living in private households with family Weighted mean b Living in residential or foster care placement Living in private households with family Weighted mean b Living in residential or foster care placement Living in private households with family Weighted mean b
Accommodation 0 17,705 0 221 25,495 0 319 36,236 0 453
Education 0 0 10,447 10,316 11,719 23,022 22,881 32,466 27,016 27,085
Health and Social Care 280 664 5,499 5,438 8,818 8,611 8,614 2,255 8,985 8,901
Productivity loss
Productivity loss (individual with ASD) 0 0 0 0 0 0 0 0 0 0
Productivity loss (parents) 0 0 4,521 4,465 0 4,620 4,562 0 4,291 4,237
Benefits 0 0 4,264 4,211 0 4,540 4,483 0 4,540 4,483
Total costs 280 18,369 24,731 24,651 46,032 40,793 40,859 70,957 44,833 45,159
Total costs (incremental) a 280 17,568 23,010 22,942 45,248 36,105 36,219 70,647 39,522 39,911

Note: a Adjusted by education costs and health and social care costs in the general population. b Weighted mean calculated by multiplying the cost by the probabilities of the individual to live in each type of accommodation.

Table 11.39 Average annual service costs per capita for children with ASD without ID and their carers, by age and place of residence (£, 2013/14)


(ages 0-1) (ages 2-4) (ages 5-11) (ages 12-15)
Living in private households with family Living in private households with family Living in private households with family Living in private households with family
Accommodation 0 0 0 0
Education 0 10,447 11,398 9,165
Health and Social Care 280 5,499 5,048 2,519
Productivity loss
Productivity loss (individual with ASD) 0 0 0 0
Productivity loss (parents) 0 4,521 3,597 4,095
Benefits 0 532 532 532
Total costs 280 20,999 20,575 16,311

Total costs (incremental) a 280 19,278 18,362 14,036

Note: a Adjusted by education costs and health and social care costs in the general population.

Table 11.40 Average annual service costs per capita for adults with ASD with ID and their carers, by age and place of residence (£, 2013/14)


(ages 16-67)
Private household Supporting people Residential care Hospital Weighted mean b
Accommodation 0 66,985 70,063 0 34,901
Education 10,115 966 3,763 0 6,019
Health and Social Care 5,844 6,053 1,637 85,664 5,689
Productivity loss
Productivity loss (individual with ASD) 25,403 25,403 25,403 25,403 25,403
Productivity loss (parents) 1,538 0 0 0 738
Benefits 7,607 4,903 4,903 1,050 6,162
Total costs 50,507 104,310 105,769 112,117 78,913

Total costs (incremental) a 48,304 103,717 105,176 111,524 77,547

Note: a Adjusted by education costs and health and social care costs in the general population. b Weighted mean calculated by multiplying the cost by the probabilities of the individual to live in each type of accommodation.

Table 11.41 Average annual service costs per capita for adults with ASD without ID and their carers, by age and place of residence (£, 2013/14)


(ages 16-67)
Private household Supporting people Residential care Weighted mean b
Accommodation 0 66,985 70,063 14,559
Education 2,273 3,275 3,275 2,483
Health and Social Care 3,473 3,960 3,960 3,575
Productivity loss
Productivity loss (individual with ASD) 22,454 22,454 22,454 22,454
Productivity loss (parents) 2,426 4,181 0 2,126
Benefits 0 0 0 0
Total costs 30,625 100,855 99,752 45,197

Total costs (incremental) a 29,718 100,262 97,722 44,126

Note: a Adjusted by education costs and health and social care costs in the general population. b Weighted mean calculated by multiplying the cost by the probabilities of the individual to live in each type of accommodation.

Chapter D.5 National annual costs for individuals with ASD diagnosis and their carers

Table 11.42 National annual costs for children with ASD diagnosis with ID and their carers, by type of accommodation, disaggregated by sector (£, 2013/14)

(ages 0-1) (ages 2-4) (ages 5-11) (ages 12-15) (ages 0-15)
Living in private households with family Living in residential or foster care placement Living in private households with family Sub-total Living in residential or foster care placement Living in private households with family Sub-total Living in residential or foster care placement Living in private households with family Sub-total Total
Accommodation 0 91,923 0 91,923 428,585 0 428,585 345,413 0 345,413 865,921
Education 0 0 4,284,804 4,284,804 197,003 30,573,904 30,770,907 309,476 20,344,798 20,654,274 55,709,985
Health and Social Care 10,950 3,447 2,255,416 2,258,863 148,236 11,436,024 11,584,259 21,495 6,766,402 6,787,897 20,641,970
Productivity loss 0 0 0 0 0 0 0 0 0 0
Productivity loss (individual with ASD) 0 0 0 0 0 0 0 0 0 0 0
Productivity loss (parents) 0 0 1,854,359 1,854,359 0 6,135,332 6,135,332 0 3,231,439 3,231,439 11,221,131
Benefits 0 0 1,748,928 1,748,928 0 6,029,277 6,029,277 0 3,418,856 3,418,856 11,197,060
Total costs 10,950 95,370 10,143,507 10,238,877 773,824 54,174,536 54,948,360 676,384 33,761,495 34,437,879 99,636,066
Total costs (incremental)* 10,950 91,209 9,437,753 9,528,962 760,646 47,948,747 48,709,392 673,430 29,761,857 30,435,287 88,684,592

Note: a Adjusted by education costs and health and social care costs in the general population.

Table 11.43 National annual costs for children with ASD diagnosis without ID and their carers, by type of accommodation, disaggregated by sector (£, 2013/14)

(ages 0-1) (ages 2-4) (ages 5-11) (ages 12-15) (ages 0-15)
Living in private households with family Living in private households with family Living in private households with family Living in private households with family Total
Accommodation 0 0 0 0 0
Education 0 1,275,743 23,299,659 14,384,709 38,960,111
Health and Social Care 22,821 671,520 10,317,959 3,953,168 14,965,468
Productivity loss
Productivity loss (individual with ASD) 0 0 0 0 0
Productivity loss (parents) 0 552,111 7,352,278 6,427,066 14,331,455
Benefits 0 64,968 1,087,482 834,962 1,987,412
Total costs 22,821 2,564,341 42,057,378 25,599,905 70,244,446
Total costs (incremental)* 22,821 2,354,212 37,535,305 22,029,730 61,942,068

Note: a Adjusted by education costs and health and social care costs in the general population.

Table 11.44 National annual costs for adults with ASD diagnosis with ID and their carers, by type of accommodation, disaggregated by sector (£, 2013/14)

(ages 16-67)
Private household Supporting people Residential care Hospital Total
Accommodation 0 223,280,565 207,591,500 0 430,872,066
Education 59,939,464 3,219,960 11,149,491 0 74,308,916
Health and Social Care 34,633,627 20,176,417 4,850,310 10,575,671 70,236,025
Productivity loss 0 0 0 0 0
Productivity loss (individual with ASD) 150,534,430 84,675,617 75,267,215 3,136,134 313,613,396
Productivity loss (parents) 9,113,848 0 0 0 9,113,848
Benefits 45,077,960 16,343,131 14,527,227 129,628 76,077,946
Total costs 299,299,329 347,695,689 313,385,744 13,841,433 974,222,196
Total costs (incremental)* 286,241,323 345,717,601 311,627,444 13,768,171 957,354,538

Note: a Adjusted by education costs and health and social care costs in the general population.

Table 11.45 National annual costs for adults with ASD diagnosis without ID and their carers, by type of accommodation, disaggregated by sector (£, 2013/14)

(ages 16-67)
Private household Supporting people Residential care Total
Accommodation 0 85,099,003 284,829,928 369,928,932
Education 45,618,977 4,160,622 13,313,989 63,093,587
Health and Social Care 69,703,849 5,030,858 16,098,747 90,833,454
Productivity loss
Productivity loss (individual with ASD) 450,710,544 28,525,984 91,283,148 570,519,676
Productivity loss (parents) 48,698,658 5,311,621 0 54,010,279
Benefits 0 0 0 0
Total costs 614,732,027 128,128,088 405,525,812 1,148,385,928
Total costs (incremental)* 596,516,503 127,374,179 397,273,147 1,121,163,829

Note: a Adjusted by education costs and health and social care costs in the general population.

Chapter D.6 Predictors of service use and cost for children with ASD

Table 11.46 Predictors of any service use by service group for children with Asperger’s/ HFA; logistic regression


Education Health care Social care Total
N 187 187 187 187
F-test 0.78 0.01 0.89 0.67
Variable (base) O.R. P O.R. P O.R. P O.R. P
Gender (male)
Female 0.71 0.44 1.54 0.35 0.92 0.85 1.04 0.95
Age (primary)
Seconday 0.77 0.48 0.28 0.00 1.08 .81 0.60 0.26


Ethnic minority (no)
yes 0.74 0.81 0.38 0.45 1.09 0.95 - -
ADHD (no)
Yes 1.25 0.71 1.94 0.25 0.84 0.72 0.82 0.78
OCD/Tourettes (no)
yes 1.26 0.84 1.73 0.63 1.47 0.62 0.44 0.49
Mood disorder (no)
Yes 2.28 0.23 2.14 0.19 1.75 0.23 5.44 0.13
Constant 3.70 0.00 3.17 0.00 0.50 0.00 8.06 0.00

Note: First part of the model- binary receipt (yes or no): Logit model.

Table 11.47 Predictors of service costs by service group for children with Asperger’s/ HFA


Education Health care Social care Total
Model OLS (Log dep var) NLS OLS (Log dep var) OLS (Log dep var)
N 145 127 66 163
F-test 0.21 - 0.94 0.02
Variable (base) Coef. P Coef. P Coef. P Coef. P
Gender (male)
Female -0.16 0.24 -1387 0.77 0.32 0.51 -0.34 0.13
Age (primary)
Seconday -0.01 0.90 -1717 0.65 -0.07 0.86 -0.18 0.30
Ethnic minority (no)
yes -0.28 0.51 -3652 0.86 -0.48 0.75 -0.01 0.99
ADHD (no)
Yes 0.25 0.09 -1619 0.76 0.55 0.32 0.50 0.06
OCD/Tourettes (no)
yes 0.07 0.78 43599 0.00 0.24 0.75 1.03 0.02
Mood disorder (no)
Yes 0.17 0.25 -10216 0.06 -0.28 0.57 0.04 0.87
Constant 9.22 0.00 5424 0.03 6.11 0.00 9.25 0.00

Table 11.48 Predictors of any service use by service group for children with autism; logistic regression


Education Health care Social care Total
N 135 135 135 135
F-test 0.56 0.23 0.01 0.29
Variable (base) O.R. P O.R. P O.R. P O.R. P
Gender (male)
Female 1.12 0.86 - - 3.00 0.02 - -
Age 1.03 0.65 0.88 0.04 1.13 0.03 0.99 0.87
Living away from parent (no)
Yes - - 0.38 0.34 6.66 0.12 - -
Ethnic minority (no)
yes - - - - 1.31 0.78 - -
ADHD (no)
Yes - - 4.30 0.19 7.48 0.01 - -
Epilepsy (no)
Yes 1.11 0.93 2.59 0.42 5.60 0.06 - -
OCD/Tourettes (no)
yes - - - - 5.56 0.30 - -
Mood disorder (no)
Yes 0.77 0.81 0.85 0.89 0.14 0.12 - -
Constant 4.65 0.00 12.28 0.00 0.14 0.00 11.57 0.00

Note: First part of the model- binary receipt (yes or no): Logit model.

Table 11.49 Predictors of service costs by service group for children with autism


Education Health care Social care Total
Model NLS OLS (Log dep var) NLS OLS (Log dep var)
N 116 110 55 123
F-test - 0.56 - 0.00
Variable (base) Coef. P Coef. P Coef. P Coef. P
Gender (male)
Female -141 0.97 0.20 0.43 4267 0.12 0.004 0.98
Age (primary)
Seconday 1156 0.01 -0.06 0.05 546 0.11 0.02 0.46
Ethnic minority (no)
yes 847 0.91 -0.37 0.48 -363 0.95 0.05 0.88
Living away from parent (no)
Yes 72852 0.00 0.23 0.73 33361 0.00 1.74 0.00
Epilepsy (no)
Yes 15095 0.03 -0.09 0.85 4148 0.27 0.38 0.21
ADHD (no)
Yes -1477 0.76 0.34 0.35 6429 0.05 0.47 0.05
OCD/Tourettes (no)
yes 4261 0.65 0.38 0.55 -1548 0.78 0.46 0.31
Mood disorder (no)
Yes 7374 0.38 -0.67 0.26 7748 0.26 -0.31 0.40
Constant 8296 0.04 8.66 0.00 -4294 0.22 9.67 0.00

Chapter D.7 Predictors of service use and cost for adults with ASD

Table 11.50 Predictors of any service use by service group for adults with Asperger’s/ HFA; logistic regression


Education Health care Social care Total
N 190 217 217 217
F-test 0.01 0.02 0.01 0.07
Variable (base) O.R. P O.R. P O.R. P O.R. P
Gender (male)
Female 1.05 0.94 1.80 0.10 1.04 0.92 1.46 0.32
Age 1.04 0.19 1.01 0.72 1.01 0.60 1.00 0.94
16-17 (no)
yes 221.4 0.00 1.90 0.34 5.82 0.02 5.74 0.02
Living alone or with friends (no)
Yes 1.16 0.85 1.43 0.40 1.79 0.21 1.84 0.18
Ethnic minority (no)
yes - - 0.10 0.03 0.21 0.23 0.12 0.02
Relationship (no)
yes 0.51 0.43 0.95 0.90 0.21 0.01 0.80 0.62
Employment stat (employed) 18+
Not employed 0.48 0.39 1.01 0.98 1.12 0.78 1.01 0.98
student 8.21 0.01 0.67 0.44 1.63 0.41 1.43 0.52
Highest ed (uni)
None 13.67 0.08 2.16 0.32 10.41 0.00 5.18 0.07
Access/foundation 9.92 0.12 1.46 0.61 15.09 0.00 9.65 0.02
Standard/higher/ sixth 6.95 0.11 1.93 0.15 1.39 0.52 1.59 0.32
Other - - 0.49 0.28 1.07 0.93 0.72 0.61
ADHD (no)
Yes 2.36 0.42 1.47 0.56 7.24 0.00 2.20 0.28
Epilepsy (no)
Yes 1.49 0.79 0.28 0.18 1.66 1.57 0.83 0.84
OCD/Tourettes (no)
yes 1.54 0.67 3.14 0.09 0.32 0.10 2.59 0.19
Mood disorder (no)
Yes 0.77 0.70 3.92 0.00 2.02 0.07 4.01 0.00
ID (no)
Yes 1.85 0.63 0.23 0.22 0.23 0.18 0.29 0.27
Constant 0.003 0.00 0.37 0.15 0.12 0.01 0.57 0.43

Note: First part of the model- binary receipt (yes or no): Logit model.

Table 11.51 Predictors of service costs by service group for adults with Asperger’s/ HFA


Education Health care Social care Total
Model OLS (Log dep var) NLS OLS (Log dep var) OLS (Log dep var)
N 29 125 68 150
F-test 0.87 - 0.03 0.09
Variable (base) Coef. P Coef. P Coef. P Coef. P
Gender (male)
Female -0.10 0.87 -2576 0.10 0.66 0.32 5962 0.36
Age -0.16 0.28 -20 0.64 0.02 0.51 -84 0.76
16-17 (no)
yes -8.65 0.34 -1416 0.49 0.07 0.97 -19250 0.10
Living alone or with friends (no)
Yes -0.22 0.73 -1684 0.14 0.22 0.77 - -
Ethnic minority (no)
yes - - -199 0.96 3.66 0.13 -9485 0.61
Relationship (no)
yes 0.60 0.45 1227 0.29 -2.40 0.03 -5608 0.47
Employment stat (employed) 18+
Not employed -1.96 0.48 -1001* 0.32 -0.57 0.44 -6189* 0.37
student -2.33 0.43 -3401 0.04 -2.16 0.03 -9770 0.32
Highest ed (uni)
None -5.36 0.36 889* 0.58 2.09 0.05 -17633* 0.07
Access/foundation 3.66 0.20 - - -0.37 0.74 - -
Standard grade -5.88 0.31 1239 0.39 0.53 0.58 -9493 0.26
Other - - 3662 0.10 0.45 0.77 -15045 0.39
ADHD (no)
Yes 4.82 0.25 -1792 0.29 -0.62 0.53 - -
Epilepsy (no)
Yes 12.19 0.25 -2013 0.57 0.55 0.77 5110 0.74
OCD/Tourettes (no)
yes -11.39 0.29 1945 0.16 1.06 0.37 -2371 0.80
Mood disorder (no)
Yes -0.47 0.42 -589 0.54 0.20 0.78 4055 0.53
ID (no)
Yes -4.64 0.28 559 0.88 0.07 0.97 -37 1.00
Constant 20.01 0.10 5195 0.02 7.21 0.00 25651 0.05

Table 11.52 Predictors of any service use by service group for adults with autism; logistic regression


Education Health care Social care Total
N 80 80 80 82
F-test 0.76 0.71 0.89 0.58
Variable (base) O.R. P O.R. P O.R. P O.R. P
Gender (male)
Female 10.77 0.054 0.41 0.18 0.72 0.63 0.74 0.69
Age 0.74 0.052 0.98 0.37 0.98 0.55 0.97 0.21
Living away from parents (no)
Yes 2.78 0.45 2.94 0.18 3.66 0.11 23.6 1.00
Relationship (no)
yes 1.32 0.90 0.19 0.28 0.10 0.15 0.03 1.00
Employment stat (employed) 18+
Not employed 0.23 0.30 1.05 0.96 1.59 0.60 - -
student 180.50 0.15 0.50 0.52 1.96 0.55 - -
16-17 2.26 0.60 1.43 0.75 1.10 0.93 - -
Highest ed (none)
Access or foundation 6.88 0.11 1.07 0.93 2.35 0.33 - -
Standard grade+ 0.04 0.42 0.99 0.99 0.55 0.54 - -
Other 1.22 0.92 0.93 0.96 0.43 0.47 - -
Epilepsy (no)
Yes 1.44 0.80 4.76 0.14 0.99 0.99 - -
OCD/Tourettes (no)
yes 13.30 0.15 5.40 0.29 1.02 0.98 - -
Mood disorder (no)
Yes 0.26 1.50 5.85 0.05 1.10 0.90 6.13 0.12
ID (no)
Yes 1.35 0.83 1.26 0.82 1.23 0.80 1.86 0.53
Constant 108.87 0.16 1.51 0.73 1.37 0.79 5.23 0.10

Note: First part of the model- binary receipt (yes or no): Logit model

Table 11.53 Predictors of service costs by service group for adults with autism


Education Health care Social care Total
Model NLS OLS (log dep. Var) NLS NLS
N 26 48 50 65
F-test - 0.38 - -
Variable (base) Coef. P Coef. P Coef. P Coef. P
Gender (male)
Female -18250 0.19 2.8 0.65 5926 0.68 5068 0.68
Age 1167 0.28 -0.01 0.82 -577 0.31 -747 0.14
Living away from parents (no)
Yes 11534 0.43 0.65 0.25 3882 0.01 37715 0.00
Relationship (no)
yes - - -0.93 0.66 - - -19769 0.56
Employment stat (employed) 18+
Not employed - - -0.64 0.38 - - - -
student 658 0.97 0.87 0.45 -14396 0.48 2058 0.90
16-17 7076 0.64 0.98 0.29 -17313 0.40 9963 0.69
Highest ed (none)
Access or foundation -12790 0.49 -0.05 0.95 -4768 0.77 -2142 0.88
Standard grade+ -17313 0.40 -0.11 0.89 -27264 0.19 -24398 0.15
Other -39450 0.23 1.99 0.03 -2363 0.93 11374 0.57
Epilepsy (no)
Yes - - 0.50 0.52 -12124 0.55 -14395 0.37
OCD/Tourettes (no)
yes - - 0.04 0.96 11298 0.64 3722 0.83
Mood disorder (no)
Yes - - 1.24 0.06 -1202 0.94 -2818 0.83
ID (no)
Yes 12468 0.41 -0.10 0.87 5255 0.72 8186 0.51
Constant 5236 0.84 6.58 0.00 27347 0.22 36144 0.07

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