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. 2024 Oct;28(72):1–147. doi: 10.3310/MWTQ5721

Behavioural interventions to treat anxiety in adults with autism and moderate to severe intellectual disabilities: the BEAMS-ID feasibility study.

Peter E Langdon, Magdalena M Apanasionok, Emma Scripps, Karen Bunning, Malwina Filipczuk, David Gillespie, Richard P Hastings, Andrew Jahoda, Rachel McNamara, Dheeraj Rai, Kylie M Gray
PMCID: PMC11586821  PMID: 39487624

Abstract

BACKGROUND

Interventions for anxiety need to be adapted to meet the needs of autistic people with moderate to severe learning disabilities and successfully modelled before evidence about efficacy can be generated from clinical trials.

OBJECTIVES

The objectives were to: (1) adapt a behavioural intervention for anxiety, develop an intervention fidelity checklist and logic model, and appraise candidate outcome measures, together with carers, autistic people, and clinicians, (2) characterise treatment-as-usual, (3) model the adapted intervention to determine the acceptability and feasibility for all stakeholders, judge the appropriateness of outcome measures, examine the feasibility and acceptability of consent and associated processes and (4) describe factors that facilitate or challenge intervention delivery.

DESIGN

This study had two phases. Phase 1a: using consensus methods, an intervention adaptation group was formed who met to adapt the intervention, appraise candidate outcome measures, and contribute to the development of the intervention fidelity checklists and logic model. Phase 1b: a national online survey was conducted with professionals to characterise treatment-as-usual. Phase 2: this was a single-group non-randomised feasibility study designed to model the intervention to test intervention feasibility and acceptability, outcome measures, and aspects of the research process.

SETTING

Participants were recruited from National Health Service community adult learning disabilities teams in England.

PARTICIPANTS

Participants aged 16 and over with a diagnosis of autism, moderate to severe learning disabilities, an anxiety disorder, and a carer who was available to take part in the intervention. For those who lacked capacity to make a decision about taking part, a consultee had to provide advice that the participant should be included in the study.

INTERVENTIONS

The intervention comprised 12 sessions alongside treatment-as-usual.

MAIN OUTCOME MEASURES

The feasibility and acceptability of the intervention and research processes, outcome measure completion rates, and intervention adherence.

RESULTS

The intervention was successfully adapted and modelled with 28 autistic participants with moderate to severe learning disabilities. The intervention was judged to be feasible and acceptable by autistic adults with learning disabilities, carers, and therapists. Carers and therapists suggested minor intervention revisions. Carers completed 100% of outcome measures and the missing data rate was low; however, they indicated that some of the questions were repetitive and said they had difficulty responding to some items. The use of the Mental Capacity Act, 2005, led to an average 5-week delay to participant enrolment. The accrual rate was affected by the COVID-19 pandemic and improved during the summer and early autumn of 2022.

LIMITATIONS

Randomisation was not modelled within this feasibility study, although carers and therapists indicated that this would be acceptable.

CONCLUSIONS

The BEAMS-ID intervention and associated study processes were judged to be feasible and acceptable. The intervention required minor revision.

FUTURE WORK

The BEAMS-ID intervention should be tested further within a trial.

STUDY REGISTRATION

This study is registered as ISRCTN12637590.

FUNDING

This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR129804) and is published in full in Health Technology Assessment; Vol. 28, No. 72. See the NIHR Funding and Awards website for further award information.

Plain language summary

This study was about autistic adults with moderate to severe learning disabilities who have anxiety. There are good interventions for anxiety, but these need to change to meet the needs of autistic adults with moderate to severe learning disabilities. An example of such an intervention is called exposure therapy. This study had two parts. In the first part, we worked with autistic adults, carers and family members, and professionals to adapt an existing anxiety intervention. We also completed a national survey to find out what interventions people are getting now. In the second part, the intervention was tested with 28 autistic adults with moderate to severe learning disabilities. We asked participants, carers and clinicians about their experiences of being part of the study and receiving the intervention. We successfully changed an existing intervention together with autistic adults, carers and family members, and professionals. The intervention included relaxation training and exposure therapy. From our national survey, we found out that autistic people with moderate to severe learning disabilities who have problems with anxiety are most often offered psychological interventions (e.g. relaxation) or medication (e.g. sertraline) for anxiety. Exposure therapy was not offered very frequently. We tried out our intervention and autistic people with moderate to severe learning disabilities told us that they liked coming to the intervention and liked that their carer attended. Carers liked taking part in the research and were positive about the intervention. Therapists told us that the intervention was suitable and were positive about the training they received in delivering the intervention. Both carers and therapists suggested some changes to the intervention to help improve it in the future. We recommended that a larger study should now be completed.

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References

  1. Vereenooghe L, Langdon PE. Psychological therapies for people with intellectual disabilities: a systematic review and meta-analysis. Res Dev Disabil 2013;34:4085–102. doi: 10.1016/j.ridd.2013.08.030. [DOI] [PubMed]
  2. Weston L, Hodgekins J, Langdon PE. Effectiveness of cognitive behavioural therapy with people who have autistic spectrum disorders: a systematic review and meta-analysis. Clin Psychol Rev 2016;49:41–54. doi: 10.1016/j.cpr.2016.08.001. [DOI] [PubMed]
  3. Tapp K, Vereenooghe L, Hewitt O, Scripps E, Gray KM, Langdon PE. Psychological therapies for people with intellectual disabilities: an updated systematic review and meta-analysis. Compr Psychiatry 2023;122:152372. https://doi.org/10.1016/j.comppsych.2023.152372 doi: 10.1016/j.comppsych.2023.152372. [DOI] [PubMed]
  4. Vereenooghe L, Flynn S, Hastings RH, Adams D, Chauhan U, Cooper SA, et al. Interventions for mental health problems in children and adults with severe intellectual disabilities: a systematic review. BMJ Open 2018;8:e021911. https://doi.org/10.1136/bmjopen-2018-021911 doi: 10.1136/bmjopen-2018-021911. [DOI] [PMC free article] [PubMed]
  5. Hofmann SG, Smits JA. Cognitive-behavioral therapy for adult anxiety disorders: a meta-analysis of randomized placebo-controlled trials. J Clin Psychiatry 2008;69:621–32. doi: 10.4088/jcp.v69n0415. [DOI] [PMC free article] [PubMed]
  6. Sweet AA, Loizeaux AL. Behavioral and cognitive treatment methods: a critical comparative review. J Behav Ther Exp Psychiatry 1991;22:159–85. doi: 10.1016/0005-7916(91)90014-v. [DOI] [PubMed]
  7. Hayes SC. Acceptance and Commitment Therapy and the New Behavior Therapies: Mindfulness, Acceptance, and Relationship. In Hayes SC, Follette VM, Linehan MM, editors. Mindfulness and Acceptance: Expanding the Cognitive-Behavioral Tradition. New York: Guilford Press; 2004. pp. 1–29.
  8. Longmore RJ, Worrell M. Do we need to challenge thoughts in cognitive behavior therapy? Clin Psychol Rev 2007;27:173–87. doi: 10.1016/j.cpr.2006.08.001. [DOI] [PubMed]
  9. Borkovec T, Costello E. Efficacy of applied relaxation and cognitive-behavioral therapy in the treatment of generalized anxiety disorder. J Consult Clin Psychol 1993;61:611. doi: 10.1037//0022-006x.61.4.611. [DOI] [PubMed]
  10. Emmelkamp PM, Mersch PP, Vissia E, van der Helm M. Social phobia: a comparative evaluation of cognitive and behavioral interventions. Behav Res Ther 1985;23:365–9. doi: 10.1016/0005-7967(85)90015-4. [DOI] [PubMed]
  11. Mattick RP, Peters L, Clarke JC. Exposure and cognitive restructuring for social phobia: a controlled study. Behav Ther 1989;20:3–23.
  12. Vogel PA, Stiles TC, Gotestam KG. Adding cognitive therapy elements to exposure therapy for obsessive compulsive disorder: a controlled study. Behav Cogn Psychother 2004;32:275–90.
  13. Norton PJ, Price EC. A meta-analytic review of adult cognitive-behavioral treatment outcome across the anxiety disorders. J Nerv Ment Dis 2007;195:521–31. doi: 10.1097/01.nmd.0000253843.70149.9a. [DOI] [PubMed]
  14. Ougrin D. Efficacy of exposure versus cognitive therapy in anxiety disorders: systematic review and meta-analysis. BMC Psychiatry 2011;11:200. doi: 10.1186/1471-244X-11-200. [DOI] [PMC free article] [PubMed]
  15. Podina IR, Visla A, Fodor LA, Fluckiger C. Is there a sleeper effect of exposure-based vs. cognitive-only intervention for anxiety disorders? A longitudinal multilevel meta-analysis. Clin Psychol Rev 2019;73:101774. https://doi.org/10.1016/j.cpr.2019.101774 doi: 10.1016/j.cpr.2019.101774. [DOI] [PubMed]
  16. Rosen TE, Connell JE, Kerns CM. A review of behavioral interventions for anxiety‐related behaviors in lower‐functioning individuals with autism. Behav Interv 2016;31:120–43.
  17. Koegel RL, Openden D, Koegel LK. A systematic desensitization paradigm to treat hypersensitivity to auditory stimuli in children with autism in family contexts. Res Prac Pers Severe Dis 2004;29:122–34.
  18. Love SR, Matson JL, West D. Mothers as effective therapists for autistic children’s phobias. J Appl Behav Anal 1990;23:379–85. doi: 10.1901/jaba.1990.23-379. [DOI] [PMC free article] [PubMed]
  19. Luscre DM, Center DB. Procedures for reducing dental fear in children with autism. J Autism Dev Disord 1996;26:547–56. doi: 10.1007/BF02172275. [DOI] [PubMed]
  20. Shabani DB, Fisher WW. Stimulus fading and differential reinforcement for the treatment of needle phobia in a youth with autism. J Appl Behav Anal 2006;39:449–52. doi: 10.1901/jaba.2006.30-05. [DOI] [PMC free article] [PubMed]
  21. Schmidt JD, Luiselli JK, Rue H, Whalley K. Graduated exposure and positive reinforcement to overcome setting and activity avoidance in an adolescent with autism. Behav Modif 2013;37:128–42. doi: 10.1177/0145445512456547. [DOI] [PubMed]
  22. Wolff JJ, Symons FJ. An evaluation of multi‐component exposure treatment of needle phobia in an adult with autism and intellectual disability. J Appl Res Intellect Disabil 2013;26:344–8. doi: 10.1111/jar.12002. [DOI] [PubMed]
  23. Allison G, Harrop C, Ellett L. Perception of peer group rank of individuals with early psychosis. Br J Clin Psychol 2013;52:1–11. https://doi.org/10.1111/j.2044-8260.2012.02041.x doi: 10.1111/j.2044-8260.2012.02041.x. [DOI] [PubMed]
  24. Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T. Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet 2006;368:210–5. doi: 10.1016/S0140-6736(06)69041-7. [DOI] [PubMed]
  25. Simonoff E, Pickles A, Charman T, Chandler S, Loucas T, Baird G. Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. J Am Acad Child Adolesc Psychiatry 2008;47:921–9. doi: 10.1097/CHI.0b013e318179964f. [DOI] [PubMed]
  26. Hofvander B, Delorme R, Chaste P, Nydén A, Wentz E, Ståhlberg O, et al. Psychiatric and psychosocial problems in adults with normal-intelligence autism spectrum disorders. BMC Psychiatry 2009;9:35. doi: 10.1186/1471-244X-9-35. [DOI] [PMC free article] [PubMed]
  27. Joshi G, Wozniak J, Petty C, Martelon MK, Fried R, Bolfek A, et al. Psychiatric comorbidity and functioning in a clinically referred population of adults with autism spectrum disorders: a comparative study. J Autism Dev Disord 2013;43:1314–25. doi: 10.1007/s10803-012-1679-5. [DOI] [PubMed]
  28. Wigham S, Rodgers J, South M, McConachie H, Freeston M. The interplay between sensory processing abnormalities, intolerance of uncertainty, anxiety and restricted and repetitive behaviours in autism spectrum disorder. J Autism Dev Disord 2015;45:943–52. doi: 10.1007/s10803-014-2248-x. [DOI] [PubMed]
  29. Lidstone J, Uljarević M, Sullivan J, Rodgers J, McConachie H, Freeston M, et al. Relations among restricted and repetitive behaviors, anxiety and sensory features in children with autism spectrum disorders. Res Autism Spectr Disord 2014;8:82–92.
  30. Bakken TL, Helverschou SB, Eilertsen DE, Heggelund T, Myrbakk E, Martinsen H. Psychiatric disorders in adolescents and adults with autism and intellectual disability: a representative study in one county in Norway. Res Dev Disabil 2019;31:1669–77. doi: 10.1016/j.ridd.2010.04.009. [DOI] [PubMed]
  31. Bradley E, Bolton PF, Bryson SE. Psychiatric comorbidity in persons with intellectual disability (ID) with and without autism. J Intellect Disabil Res 2004;48:296.
  32. Nimmo-Smith V, Heuvelman H, Dalman C, Lundberg M, Idring S, Carpenter P, et al. Anxiety disorders in adults with autism spectrum disorder: A population-based study. J Autism Dev Disord 2020;50:308–18. doi: 10.1007/s10803-019-04234-3. [DOI] [PMC free article] [PubMed]
  33. Linden A, Best L, Elise F, Roberts D, Branagan A, Tay YBE, et al. Benefits and harms of interventions to improve anxiety, depression, and other mental health outcomes for autistic people: a systematic review and network meta-analysis of randomised controlled trials. Autism 2023;27:7–30. https://doi.org/10.1177/13623613221117931 doi: 10.1177/13623613221117931. [DOI] [PMC free article] [PubMed]
  34. Jahoda A, Hastings R, Hatton C, Cooper SA, Dagnan D, Zhang R, et al. Comparison of behavioural activation with guided self-help for treatment of depression in adults with intellectual disabilities: a randomised controlled trial. Lancet Psychiatry 2017;4:909–19. doi: 10.1016/S2215-0366(17)30426-1. [DOI] [PMC free article] [PubMed]
  35. Pouw LBC, Rieffe C, Stockmann L, Gadow KD. The link between emotion regulation, social functioning, and depression in boys with ASD. Res Autism Spectr Disord 2013;7:549–56. https://doi.org/10.1016/j.rasd.2013.01.002
  36. Bellini S. Social skill deficits and anxiety in high-functioning adolescents with autism spectrum disorders. Focus Autism Other Dev Disabl 2004;19:78–86.
  37. Bellini S. The development of social anxiety in adolescents with autism spectrum disorders. Focus Autism Other Dev Disabl 2006;21:138–45.
  38. Factor RS, Condy EE, Farley JP, Scarpa A. Brief report: insistence on sameness, anxiety, and social motivation in children with autism spectrum disorder. J Autism Dev Disord 2016;46:2548–54. https://doi.org/10.1007/s10803-016-2781-x doi: 10.1007/s10803-016-2781-x. [DOI] [PubMed]
  39. Martinez-Gonzalez AE, Cervin M, Piqueras JA. Relationships between emotion regulation, social communication and repetitive behaviors in autism spectrum disorder. J Autism Dev Disord 2022;52:4519–27. https://doi.org/10.1007/s10803-021-05340-x doi: 10.1007/s10803-021-05340-x. [DOI] [PMC free article] [PubMed]
  40. Whitehouse AJ, Durkin K, Jaquet E, Ziatas K. Friendship, loneliness and depression in adolescents with Asperger’s syndrome. J Adolesc 2009;32:309–22. https://doi.org/10.1016/j.adolescence.2008.03.004 doi: 10.1016/j.adolescence.2008.03.004. [DOI] [PubMed]
  41. Gotham K, Bishop SL, Brunwasser S, Lord C. Rumination and perceived impairment associated with depressive symptoms in a verbal adolescent-adult ASD sample. Autism Res 2014;7:381–91. https://doi.org/10.1002/aur.1377 doi: 10.1002/aur.1377. [DOI] [PMC free article] [PubMed]
  42. Hedley D, Uljarevic M, Foley KR, Richdale A, Trollor J. Risk and protective factors underlying depression and suicidal ideation in autism spectrum disorder. Depress Anxiety 2018;35:648–57. https://doi.org/10.1002/da.22759 doi: 10.1002/da.22759. [DOI] [PubMed]
  43. Hedley D, Uljarević M, Wilmot M, Richdale A, Dissanayake C. Understanding depression and thoughts of self-harm in autism: a potential mechanism involving loneliness. Res Autism Spectr Disord 2018;46:1–7. https://doi.org/10.1016/j.rasd.2017.11.003
  44. Vickerstaff S, Heriot S, Wong M, Lopes A, Dossetor D. Intellectual ability, self-perceived social competence, and depressive symptomatology in children with high-functioning autistic spectrum disorders. J Autism Dev Disord 2007;37:1647–64. doi: 10.1007/s10803-006-0292-x. [DOI] [PubMed]
  45. Hedley D, Young R. Social comparison processes and depressive symptoms in children and adolescents with Asperger syndrome. Autism 2006;10:139–53. https://doi.org/10.1177/1362361306062020 doi: 10.1177/1362361306062020. [DOI] [PubMed]
  46. Crane L, Goddard L, Pring L. Autobiographical memory in adults with autism spectrum disorder: the role of depressed mood, rumination, working memory and theory of mind. Autism 2013;17:205–19. https://doi.org/10.1177/1362361311418690 doi: 10.1177/1362361311418690. [DOI] [PubMed]
  47. Wallace GL, Kenworthy L, Pugliese CE, Popal HS, White EI, Brodsky E, Martin A. Real-world executive functions in adults with autism spectrum disorder: profiles of impairment and associations with adaptive functioning and co-morbid anxiety and depression. J Autism Dev Disord 2016;46:1071–83. https://doi.org/10.1007/s10803-015-2655-7 doi: 10.1007/s10803-015-2655-7. [DOI] [PMC free article] [PubMed]
  48. Hollocks MJ, Jones CR, Pickles A, Baird G, Happe F, Charman T, Simonoff E. The association between social cognition and executive functioning and symptoms of anxiety and depression in adolescents with autism spectrum disorders. Autism Res 2014;7:216–28. https://doi.org/10.1002/aur.1361 doi: 10.1002/aur.1361. [DOI] [PubMed]
  49. Spiker MA, Lin CE, Van Dyke M, Wood JJ. Restricted interests and anxiety in children with autism. Autism 2012;16:306–20. https://doi.org/10.1177/1362361311401763 doi: 10.1177/1362361311401763. [DOI] [PubMed]
  50. Magiati I, Ong C, Lim XY, Tan JW, Ong AY, Patrycia F, et al. Anxiety symptoms in young people with autism spectrum disorder attending special schools: associations with gender, adaptive functioning and autism symptomatology. Autism 2016;20:306–20. https://doi.org/10.1177/1362361315577519 doi: 10.1177/1362361315577519. [DOI] [PubMed]
  51. Gotham K, Bishop SL, Hus V, Huerta M, Lund S, Buja A, et al. Exploring the relationship between anxiety and insistence on sameness in autism spectrum disorders. Autism Res 2013;6:33–41. https://doi.org/10.1002/aur.1263 doi: 10.1002/aur.1263. [DOI] [PMC free article] [PubMed]
  52. Rodgers J, Glod M, Connolly B, McConachie H. The relationship between anxiety and repetitive behaviours in autism spectrum disorder. J Autism Dev Disord 2012;42:2404–9. https://doi.org/10.1007/s10803-012-1531-y doi: 10.1007/s10803-012-1531-y. [DOI] [PubMed]
  53. Black KR, Stevenson RA, Segers M, Ncube BL, Sun SZ, Philipp-Muller A, et al. Linking anxiety and insistence on sameness in autistic children: the role of sensory hypersensitivity. J Autism Dev Disord 2017;47:2459–70. https://doi.org/10.1007/s10803-017-3161-x doi: 10.1007/s10803-017-3161-x. [DOI] [PubMed]
  54. Uljarevic M, Lane A, Kelly A, Leekam S. Sensory subtypes and anxiety in older children and adolescents with autism spectrum disorder. Autism Res 2016;9:1073–8. https://doi.org/10.1002/aur.1602 doi: 10.1002/aur.1602. [DOI] [PubMed]
  55. Mazurek MO, Kanne SM. Friendship and internalizing symptoms among children and adolescents with ASD. J Autism Dev Disord 2010;40:1512–20. https://doi.org/10.1007/s10803-010-1014-y doi: 10.1007/s10803-010-1014-y. [DOI] [PubMed]
  56. Weisbrot DM, Gadow KD, DeVincent CJ, Pomeroy J. The presentation of anxiety in children with pervasive developmental disorders. J Child Adolesc Psychopharmacol 2005;15:477–96. doi: 10.1089/cap.2005.15.477. [DOI] [PubMed]
  57. Niditch LA, Varela RE, Kamps JL, Hill T. Exploring the association between cognitive functioning and anxiety in children with autism spectrum disorders: the role of social understanding and aggression. J Clin Child Adolesc Psychol 2012;41:127–37. https://doi.org/10.1080/15374416.2012.651994 doi: 10.1080/15374416.2012.651994. [DOI] [PubMed]
  58. Dubin AH, Lieberman-Betz R, Michele Lease A. Investigation of individual factors associated with anxiety in youth with autism spectrum disorders. J Autism Dev Disord 2015;45:2947–60. https://doi.org/10.1007/s10803-015-2458-x doi: 10.1007/s10803-015-2458-x. [DOI] [PubMed]
  59. Moss P, Howlin P, Savage S, Bolton P, Rutter M. Self and informant reports of mental health difficulties among adults with autism findings from a long-term follow-up study. Autism 2015;19:832–41. https://doi.org/10.1177/1362361315585916 doi: 10.1177/1362361315585916. [DOI] [PubMed]
  60. Green SA, Ben-Sasson A. Anxiety disorders and sensory over-responsivity in children with autism spectrum disorders: is there a causal relationship? J Autism Dev Disord 2010;40:1495–504. https://doi.org/10.1007/s10803-010-1007-x doi: 10.1007/s10803-010-1007-x. [DOI] [PMC free article] [PubMed]
  61. Green SA, Ben-Sasson A, Soto TW, Carter AS. Anxiety and sensory over-responsivity in toddlers with autism spectrum disorders: bidirectional effects across time. J Autism Dev Disord 2012;42:1112–19. https://doi.org/10.1007/s10803-011-1361-3 doi: 10.1007/s10803-011-1361-3. [DOI] [PMC free article] [PubMed]
  62. Boulter C, Freeston M, South M, Rodgers J. Intolerance of uncertainty as a framework for understanding anxiety in children and adolescents with autism spectrum disorders. J Autism Dev Disord 2014;44:1391–402. https://doi.org/10.1007/s10803-013-2001-x doi: 10.1007/s10803-013-2001-x. [DOI] [PubMed]
  63. Neil L, Olsson NC, Pellicano E. The relationship between intolerance of uncertainty, sensory sensitivities, and anxiety in autistic and typically developing children. J Autism Dev Disord 2016;46:1962–73. https://doi.org/10.1007/s10803-016-2721-9 doi: 10.1007/s10803-016-2721-9. [DOI] [PMC free article] [PubMed]
  64. Maisel ME, Stephenson KG, South M, Rodgers J, Freeston MH, Gaigg SB. Modeling the cognitive mechanisms linking autism symptoms and anxiety in adults. J Abnorm Psychol 2016;125:692–703. doi: 10.1037/abn0000168. [DOI] [PubMed]
  65. Vasa RA, Kreiser NL, Keefer A, Singh V, Mostofsky SH. Relationships between autism spectrum disorder and intolerance of uncertainty. Autism Res 2018;11:636–44. https://doi.org/10.1002/aur.1916 doi: 10.1002/aur.1916. [DOI] [PMC free article] [PubMed]
  66. Hwang YIJ, Arnold S, Srasuebkul P, Trollor J. Understanding anxiety in adults on the autism spectrum: an investigation of its relationship with intolerance of uncertainty, sensory sensitivities and repetitive behaviours. Autism 2019;24:411–22.https://doi.org/10.1177/1362361319868907 doi: 10.1177/1362361319868907. [DOI] [PubMed]
  67. NHS England. Building the Right Support: A National Plan to Develop Community Services and Close Inpatient Facilities for People with a Learning Disability and/or Autism Who Display Behaviour that Challenges, Including Those with a Mental Health Condition. London: Department of Health; 2015.
  68. National Institute for Health and Care Excellence. Autism: Recognition, Referral, Diagnosis and Management of Adults on the Autism Spectrum. NICE Clinical Guideline. Leicester: British Psychological Society; 2012. [PubMed]
  69. National Institute for Health and Care Excellence. Challenging Behaviour and Learning Disabilities: Prevention and Interventions for People with Learning Disabilities Whose Behaviour Challenges. London: National Institute for Health and Care Excellence; 2015. [PubMed]
  70. National Institute for Health and Care Excellence. Mental Health Problems in People with Learning Disabilities: Prevention, Assessment and Management. London: National Institute for Health and Care Excellence; 2016. [PubMed]
  71. Buescher AV, Cidav Z, Knapp M, Mandell DS. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr 2014;168:721–8. doi: 10.1001/jamapediatrics.2014.210. [DOI] [PubMed]
  72. NHS England. NHS Research Plan. London: NHS England; 2017.
  73. Holden B, Gitlesen JP. A total population study of challenging behaviour in the county of Hedmark, Norway: prevalence, and risk markers. Res Dev Disabil 2006;27:456–65. doi: 10.1016/j.ridd.2005.06.001. [DOI] [PubMed]
  74. Cooper SA, Smiley E, Jackson A, Finlayson J, Allan L, Mantry D, Morrison J. Adults with intellectual disabilities: prevalence, incidence and remission of aggressive behaviour and related factors. J Intellect Disabil Res 2009;53:217–32. doi: 10.1111/j.1365-2788.2008.01127.x. [DOI] [PubMed]
  75. Deb S, Thomas M, Bright C. Mental disorder in adults with intellectual disability. 1: prevalence of functional psychiatric illness among a community-based population aged between 16 and 64 years. J Intellect Disabil Res 2001;45:495–505. doi: 10.1046/j.1365-2788.2001.00374.x. [DOI] [PubMed]
  76. Deb S, Thomas M, Bright C. Mental disorder in adults with intellectual disability. 2: the rate of behaviour disorders among a community-based population aged between 16 and 64 years. J Intellect Disabil Res 2001;45:506–14. doi: 10.1046/j.1365-2788.2001.00373.x. [DOI] [PubMed]
  77. Painter J, Hastings R, Ingham B, Trevithick L, Roy A. Associations between mental health problems and challenging behavior in adults with intellectual disabilities: a test of the behavioral equivalents hypothesis. J Ment Health Res Intellect Disabil 2018;11:157–72.
  78. Flynn S, Vereenooghe L, Hastings RP, Adams D, Cooper SA, Gore N, et al. Measurement tools for mental health problems and mental well-being in people with severe or profound intellectual disabilities: a systematic review. Clin Psychol Rev 2017;57:32–44. doi: 10.1016/j.cpr.2017.08.006. [DOI] [PubMed]
  79. Aman MG, Singh NN. Aberrant Behavior Checklist. East Aurora, NY: Slosson; 1986.
  80. Matson J. The Matson Evaluation of Social Skills for Individuals with Severe Retardation. Baton Rouge, LA: Scientific Publishers; 1995.
  81. Doble B, Langdon PE, Shepstone L, Murphy GH, Fowler D, Heavens D, et al. Economic evaluation alongside a randomized controlled crossover trial of modified group cognitive–behavioral therapy for anxiety compared to treatment-as-usual in adults with Asperger syndrome. MDM Policy Pract 2017;2:729353. https://doi.org/10.1177/2381468317729353 doi: 10.1177/2381468317729353. [DOI] [PMC free article] [PubMed]
  82. Langdon PE, Murphy GH, Shepstone L, Wilson EC, Fowler D, Heavens D, et al. The people with Asperger syndrome and anxiety disorders (PAsSA) trial: a pilot multicentre single-blind randomised trial of group cognitive-behavioural therapy. BJPsych Open 2016;2:179–86. doi: 10.1192/bjpo.bp.115.002527. [DOI] [PMC free article] [PubMed]
  83. Langdon PE, Murphy GH, Wilson E, Shepstone L, Fowler D, Heavens D, et al. Asperger syndrome and anxiety disorders (PAsSA) treatment trial: a study protocol of a pilot, multicentre, single-blind, randomised crossover trial of group cognitive behavioural therapy. BMJ Open 2013;3:e003449. doi: 10.1136/bmjopen-2013-003449. [DOI] [PMC free article] [PubMed]
  84. Greenwood DJ, Levin M. Introduction to Action Research: Social Research for Social Change. Thousand Oaks, CA: SAGE Publications Ltd; 2006.
  85. Jacobson E. The cultivation of physiological relaxation. Ann Intern Med 1943;19:965–72.
  86. Jahoda A, Hastings R, Hatton C, Cooper SA, McMeekin N, Dagnan D, et al. Behavioural activation versus guided self-help for depression in adults with learning disabilities: the BeatIt RCT. Health Technol Assess 2018;22:1–130. doi: 10.3310/hta22530. [DOI] [PMC free article] [PubMed]
  87. National Association for the Dually Diagnosed. Diagnostic Manual – Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability. 2nd edn. Kingston, NY: National Association for the Dually Diagnosed; 2016.
  88. Sparrow SS, Cicchetti DV, Saulnier CA. Vineland-3: Vineland Adaptive Behavior Scales. New York, NY: PsychCorp; 2016.
  89. Constantino JN, Davis SA, Todd RD, Schindler MK, Gross MM, Brophy SL, et al. Validation of a brief quantitative measure of autistic traits: comparison of the social responsiveness scale with the autism diagnostic interview-revised. J Autism Dev Disord 2003;33:427–33. doi: 10.1023/a:1025014929212. [DOI] [PubMed]
  90. Waite J. Clinical Anxiety Screen for People with Severe to Profound Intellectual Disability (Unpublished Instrument). Birmingham: Aston University; 2019.
  91. Matson J, Terlonge C, Gonzalez M. Autism Spectrum Disorders-Behavior Problems-Adult Version. Baton Rouge, LA: Disability Consultants, LLC; 2006.
  92. Aman M. Aberrant Behavior Checklist – Community. East Aurora, NY: Slosson Educational; 2017.
  93. Matson JL, Gardner WI, Coe DA, Sovner R. A scale for evaluating emotional disorders in severely and profoundly mentally retarded persons. Development of the Diagnostic Assessment for the Severely Handicapped (DASH) Scale. Br J Psychiat 1991;159:404–9. doi: 10.1192/bjp.159.3.404. [DOI] [PubMed]
  94. Gray K, Tonge B, Einfeld S, Gruber C, Klein A. (DBC2) Developmental Behaviour Checklist 2. WPB; 2018.
  95. Rojahn J, Rowe EW, Sharber AC, Hastings R, Matson JL, Didden R, et al. The Behavior Problems Inventory‐Short Form for individuals with intellectual disabilities: part I: development and provisional clinical reference data. J Intellect Disabil Res 2012;56:527–45. doi: 10.1111/j.1365-2788.2011.01507.x. [DOI] [PubMed]
  96. Raynes NV. The Cost and Quality of Community Residential Care: An Evaluation of the Services for Adults with Learning Disabilities. London: David Fulton; 1994.
  97. Helverschou SB, Bakken TL, Martinsen H. The Psychopathology in Autism Checklist (PAC): a pilot study. Res Autism Spectr Disord 2009;3:179–95.
  98. Esbensen AJ, Rojahn J, Aman MG, Ruedrich S. Reliability and validity of an assessment instrument for anxiety, depression, and mood among individuals with mental retardation. J Autism Dev Disord 2003;33:617–29. doi: 10.1023/b:jadd.0000005999.27178.55. [DOI] [PubMed]
  99. Vlissides N, Beail N, Jackson T, Williams K, Golding L. Development and psychometric properties of the Psychological Therapies Outcome Scale – Intellectual Disabilities (PTOS-ID). J Intellect Disabil Res 2017;61:549–59. https://doi.org/10.1111/jir.12361 doi: 10.1111/jir.12361. [DOI] [PubMed]
  100. Mineka S, Zinbarg R. A contemporary learning theory perspective on the etiology of anxiety disorders: it’s not what you thought it was. Am Psychol 2006;61:10–26. https://doi.org/10.1037/0003-066X.61.1.10 doi: 10.1037/0003-066X.61.1.10. [DOI] [PubMed]
  101. Dymond S, Roche B. A contemporary behavior analysis of anxiety and avoidance. Behav Anal 2009;32:7–27. doi: 10.1007/BF03392173. [DOI] [PMC free article] [PubMed]
  102. Hofmann SG. Cognitive processes during fear acquisition and extinction in animals and humans: implications for exposure therapy of anxiety disorders. Clin Psychol Rev 2008;28:199–210. https://doi.org/10.1016/j.cpr.2007.04.009 doi: 10.1016/j.cpr.2007.04.009. [DOI] [PMC free article] [PubMed]
  103. Grupe DW, Nitschke JB. Uncertainty and anticipation in anxiety: an integrated neurobiological and psychological perspective. Nat Rev Neurosci 2013;14:488–501. https://doi.org/10.1038/nrn3524 doi: 10.1038/nrn3524. [DOI] [PMC free article] [PubMed]
  104. Dunsmoor JE, Paz R. Fear generalization and anxiety: behavioral and neural mechanisms. Biol Psychiatry 2015;78:336–43. https://doi.org/10.1016/j.biopsych.2015.04.010 doi: 10.1016/j.biopsych.2015.04.010. [DOI] [PubMed]
  105. Deacon BJ, Abramowitz JS. Cognitive and behavioral treatments for anxiety disorders: a review of meta‐analytic findings. J Clin Psychol 2004;60:429–41. doi: 10.1002/jclp.10255. [DOI] [PubMed]
  106. Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ 2014;348:g1687. doi: 10.1136/bmj.g1687. [DOI] [PubMed]
  107. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277–88. https://doi.org/10.1177/1049732305276687 doi: 10.1177/1049732305276687. [DOI] [PubMed]
  108. Arain M, Campbell MJ, Cooper CL, Lancaster GA. What is a pilot or feasibility study? A review of current practice and editorial policy. BMC Med Res Methodol 2010;10:67. doi: 10.1186/1471-2288-10-67. [DOI] [PMC free article] [PubMed]
  109. Sparrow SS, Cicchetti DV, Saulnier CA. Vineland Adaptive Behavior Scales (Vineland-3). 3rd edn. Minneapolis, MN: Pearson; 2016.
  110. Bradshaw J, Gore N, Darvell C. Supporting the direct involvement of students with disabilities in functional assessment through use of Talking Mats®. Tizard Learn Disabil Rev 2018;23:111–6.
  111. Lancaster GA, Thabane L. Guidelines for reporting non-randomised pilot and feasibility studies. Pilot Feasibility Stud 2019;5:114. doi: 10.1186/s40814-019-0499-1. [DOI] [PMC free article] [PubMed]
  112. Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol 2013;13:117. doi: 10.1186/1471-2288-13-117. [DOI] [PMC free article] [PubMed]
  113. Avery KN, Williamson PR, Gamble C, O'Connell Francischetto E, Metcalfe C, Davidson P, et al. Informing efficient randomised controlled trials: exploration of challenges in developing progression criteria for internal pilot studies. BMJ Open 2017;7:e013537. doi: 10.1136/bmjopen-2016-013537. [DOI] [PMC free article] [PubMed]
  114. Pruijssers AC, van Meijel B, Maaskant M, Nijssen W, van Achterberg T. The relationship between challenging behaviour and anxiety in adults with intellectual disabilities: a literature review. J Intellect Disabil Res 2014;58:162–71. https://doi.org/10.1111/jir.12012 doi: 10.1111/jir.12012. [DOI] [PubMed]
  115. Office for National Statistics. Ethnic Group, England and Wales: Census 2021: The Ethnic Groups of Usual Residents and Household Ethnic Composition in England and Wales, Census 2021 Data. 2022. URL: www.ons.gov.uk/peoplepopulationandcommunity/culturalidentity/ethnicity/bulletins/ethnicgroupenglandandwales/census2021 (accessed 16 July 2023).

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