Abstract
Systemic Autism-related Family Enabling (SAFE) is a new intervention for families of children with a diagnosis of Autism Spectrum Disorder (ASD). SAFE responds to international and national recommendations for improved care and the reported needs of families. SAFE draws from Family Therapy techniques, Attachment Narrative Therapy and known preferences of individuals with autism. Twenty two families of a child with a diagnosis of ASD severity level 1 or 2 were recruited. The families attended five 3-hour sessions. Family members completed the Helpful Aspects of Therapy Questionnaire (HAT) after each session. Analysis of the HAT data revealed that adults and children experienced SAFE to be helpful which was elaborated in terms of the following themes: therapist as helping reflection, increased understanding, feeling closer, more confident to reflect and problem solve, improved communication and feeling less alone and isolated. The findings are discussed to consider how SAFE can be improved and implemented to offer support for families. SAFE is a good candidate to fill a gap in autism related care.
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References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: APA. https://doi.org/10.1176/appi.books.9780890425596.893619.
Asen, E., & Scholz, M. (2010). Multi-family therapy: concepts and techniques. London: Routledge. https://doi.org/10.4324/9780203841143.
Barak-Levy, Y., Goldstein, E., & Weinstock, M. (2010). Adjustment characteristics of healthy siblings of children with autism. Journal of Family Studies, 16(2), 155–164. https://doi.org/10.5172/jfs.16.2.155.
Bedrossian, L. (2015). Understand autism meltdowns and share strategies to minimize, manage occurrences. Disability Compliance for Higher Education, 20, 6. https://doi.org/10.1002/dhe.30026.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa.
Brereton, A. V., Tonge, B. J., & Einfeld, S. L. (2006). Psychopathology in children and adolescents with autism compared to young people with intellectual disability. Journal of Autism and Developmental Disorders, 36, 863–870. https://doi.org/10.1007/s10803-006-0125-y.
Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics. https://doi.org/10.1001/jamapediatrics.2014.210.
Buron, K. D., & Wolfberg, P. J. (2014). Learners on the autism spectrum: Preparing highly qualified educators and related practitioners: Instructor manual. New York: AAPC Publishing.
Cahill, J., Paley, G., & Hardy, G. (2013). What do patients find helpful in psychotherapy? Implications for the therapeutic relationship in mental health nursing. Journal of Psychiatric and Mental Health Nursing, 20(9), 782–791.
Colvin, G., & Sheehan, M. R. (2012). Managing the cycle of meltdowns for students with autism spectrum disorder. Thousand Oaks, CA: Corwin Press.
Dallos, R. (2006). Attachment narrative therapy. UK: McGraw-Hill Education.
Dallos, R., & Draper, R. (2015). An introduction to family therapy. UK: McGraw - Hill Education.
Daniels, J. L., Forssen, U., Hultman, M., Cnattingius, S., Savitz, D. A., Feychting, M., & Spraren, P. (2008). Parental psychiatric disorders associated with autism spectrum disorders in the offspring. Pediatrics, 121, 1357–1362.
Department of Health, Care Services Improvement Partnership, National Institute for Mental Health in England. (2008). Improving access to psychological therapies: Implementation plan: National guidelines for regional delivery. London: Central Office of Information. Retrieved 08 July 2020 from http://www.iapt.nhs.uk/wp-content/uploads/2009/04/nat-guidelinesregional-delivery.pdf.
Demir, T., Dogangun, B., Karacetin, G., Mukaddes, M. N., Demir, D., & Copur, M. (2008). Psychiatric disorders and symptoms in mothers of children with autistic disorder. Neurology Psychiatry and Brain Research, 15, 1–5.
Grandin, T., & Scariano, M. (1986). Emergence: labeled autistic (p. 91). Novato, CA: Arena Press.
Green, D., & Latchford, G. (2012). Maximising the benefits of psychotherapy: A practice-based evidence approach. Chichester, UK: John Wiley and Sons.
Green, J. (2009). Family therapy for autism: A tool for generating “Positive Cycles”. Child and Family Mental Health, Retrieved 20 September 2020 from http://www.childandfamilymentalhealth.com/disability-and-families/family-therapy-and-autism-time-for-a-second-look/.
Hultman, C. M., Sparén, P., & Cnattingius, S. (2002). Perinatal risk factors for infantile autism. Epidemiology, 13(4), 417–423.
Kim, J. A., Szatmari, P., Bryson, S. E., Streiner, D. L., & Wilson, F. J. (2000). The prevalence of anxiety and mood problems among children with autism and Asperger syndrome. Autism, 4, 117–132.
Larsson, H. J., Eaton, W. W., Madsen, K. M., Vestergaard, M., Olesen, A. V., Agerbo, E., & Mortensen, P. B. (2005). Risk factors for autism: perinatal factors, parental psychiatric history, and socioeconomic status. American Journal of Epidemiology, 161(10), 916–925.
Lewis, L. F. (2017). “We will never be normal”: The experience of discovering a partner has autism spectrum disorder. Journal of Marital and Family Therapy, 43(4), 631–643.
Limperopoulos, C., Bassan, H., Sullivan, N. R., Soul, J. S., Robertson, R. L., Moore, M., & du Plessis, A. J. (2008). Positive screening for autism in ex-preterm infants: Prevalence and risk factors. Pediatrics, 121(4), 758–765.
Lipsky, D. (2011). From anxiety to meltdown: How individuals on the autism spectrum deal with anxiety, experience meltdowns, manifest tantrums, and how you can intervene effectively. London, England: Jessica Kingsley Publishers.
Llewelyn, S. P., Elliott, R., Shapiro, D. A., Hardy, G., & Firth-Cozens, J. (1988). Client perceptions of significant events in prescriptive and exploratory periods of individual therapy. British Journal of Clinical Psychology, 27(2), 105–114. https://doi.org/10.1111/j.2044-8260.1988.tb00758.x.
Markoulakis, R., Fletcher, P., & Bryden, P. (2012). Seeing the glass half full: Benefits to the lived experiences of female primary caregivers of children with autism. Clinical Nurse Specialist, 26(1), 48–56. https://doi.org/10.1097/nur.0b013e31823bfb0f.
Matson, J. L., & Nebel-Schwalm, M. S. (2007). Comorbid psychopathology with autism spectrum disorder in children: An overview. Research in Developmental Disabilities, 28(4), 341–352. https://doi.org/10.1016/j.ridd.2005.12.004.
Mazefsky, C. A., Folstein, S. E., & Lainhart, J. E. (2008). Overrepresentation of mood and anxiety disorders in adults with autism and their first degree relatives: What does it mean? Autism Research, 1, 193–197. https://doi.org/10.1002/aur.23.
McKenzie, R., Dallos, R., Stedmon, J., Hancocks, H., Vassallo, T., Myhill, C., & Ewings, P. (2019). SAFE, a new therapeutic intervention for families of children with autism: Study protocol for a feasibility randomised controlled trial. British Medical Journal Open, 9(5), 1–11. https://doi.org/10.1136/bmjopen-2018-025006.
McKenzie, R., Dallos, R., Stedmon, J., Hancocks, H., Vickery, P. J., Barton, A., & Ewings, P. (2020). SAFE, a new therapeutic intervention for families of children with autism: A randomised controlled feasibility trial. British Medical Journal Open, 10(12), e038411. https://doi.org/10.1136/bmjopen-2020-038411.
Montague, I., Dallos, R., & McKenzie, R. (2018). “It feels like something difficult is coming back to haunt me”: The association between a child’s autism spectrum disorder meltdown and a parent’s adverse childhood. Child Psychology and Psychiatry, 23(1), 125–139. https://doi.org/10.1177/1359104517730114.
Munroe, E. (2011). The Munroe review of child protection: Final report. UK: Department of Education, HM Stationary Office. https://doi.org/10.1375/jcas.36.3.164
Neely, J., Amatea, E. S., Echevarria-Doan, S., & Tannen, T. (2012). Working with families living with autism: Potential contributions of marriage and family therapists. Journal of Marital and Family Therapy, 38, 211–226. https://doi.org/10.1111/j.1752-0606.2011.00265.x.
NICE guidelines (2013) [CG170] Retrieved 08 July 2020 from https://www.nice.org.uk/guidance/cg170/chapter/patient-centred-care.
NICE guidelines (2017) [CG128] Retrieved 08 July 2020 from https://www.nice.org.uk/guidance/cg128.
Parker, M. L., & Molteni, J. (2017). Structural family therapy and autism spectrum disorder: Bridging the disciplinary divide. The American Journal of Family Therapy, 45(3), 135–148. https://doi.org/10.1080/01926187.2017.1303653.
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, Special Issue Article. https://doi.org/10.1177/1362361314529627.
Pisula, E. (2011). Parenting stress in mothers and fathers of children with autism spectrum disorders. In M. R. Mohammadi (Ed.), A comprehensive book on autism spectrum disorders (pp. 87–106). Croatia: InTech.
Potter, C. A. (2016). ‘I accept my son for who he is–he has incredible character and personality’: Fathers’ positive experiences of parenting children with autism. Disability and Society, 31(7), 948–965. https://doi.org/10.1080/09687599.2016.1216393.
Proctor, H. G. (1999). Family therapy and autism: A personal construct approach. In S. Powell (Ed.), Helping children with autism to learn. London : David Fulton. https://doi.org/10.4324/9780203065129-11.
Richdale, A. L., & Schreck, K. A. (2009). Sleep problems in autism spectrum disorders: Prevalence, nature, and possible biopsychosocial aetiologies. Sleep Medicine Reviews, 13(6), 403–411. https://doi.org/10.1016/j.smrv.2009.02.003.
Roberts, A. L., Koenen, K. C., Lyall, K., Ascherio, A., & Weisskopf, M. G. (2014). Women’s posttraumatic stress symptoms and autism spectrum disorder in their children. Research in Autism Spectrum Disorders, 8(6), 608–616. https://doi.org/10.1016/j.rasd.2014.02.004.
Roberts, A. L., Lyall, K., Rich-Edwards, J. W., Ascherio, A., & Weisskopf, M. G. (2016). Maternal exposure to intimate partner abuse before birth is associated with autism spectrum disorder in offspring. Autism, 20(1), 26–36. https://doi.org/10.1177/1362361314566049.
Roberts, A. L., Lyall, K., Rich-Edwards, J. W., Ascherio, A., & Weisskopf, M. G. (2013). Association of maternal exposure to childhood abuse with elevated risk for autism in offspring. JAMA psychiatry, 70(5), 508–515. https://doi.org/10.1001/jamapsychiatry.2013.447.
Sasson, N. J., Lam, K. S. L., Parlier, M., Daniels, J. L., & Piven, J. (2013). Autism and the broad autism phenotype: Familial patterns and intergenerational transmission. Journal of Neurodevelopmental Disorders, 5, 11–18. https://doi.org/10.1186/1866-1955-5-11.
Siklos, S., & Kerns, K. A. (2008). Assessing need for social support in parents of children with autism and down syndrome. Journal of Autism and Developmental Disorders, 36, 921–933. https://doi.org/10.1007/s10803-006-0129-7.
Simon, G. (2004). Systemic family therapy with families with a child who has a diagnosis of Asperger syndrome. Human Systems, 15(4), 257–274. https://doi.org/10.4324/9780203501801.
Slade, A., Aber, J. L., Bresgi, I., Berger, B., & Kaplan, M. (2004). The parent development interview–revised. New York: The City University of New York. https://doi.org/10.1037/t76587-000.
Slade, A. (2005). Parental reflective functioning: An introduction. Attachment and Human Development, 7(3), 269–281. https://doi.org/10.1080/14616730500245906.
Smock Jordan, S., & Turns, B. (2016). Utilizing solution-focused brief therapy with families living with autism spectrum disorder. Journal of Family Psychotherapy, 27(3), 155–170. https://doi.org/10.1080/08975353.2016.1199766.
Solomon, A. H., & Chung, B. (2012). Understanding autism: How family therapists can support parents of children with autism spectrum disorders. Family Process, 51(2), 250–264. https://doi.org/10.1111/j.1545-5300.2012.01399.x.
Spain, D., Sin, J., Paliokosta, E., Furuta, M., Prunty, J. E., Chalder, T., & Happe, F. G. (2017). Family therapy for autism spectrum disorders. Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.cd011894.pub2.
Stoddart, K. P. (1999). Adolescents with Asperger syndrome: Three case studies of individual and family therapy. Autism, 3(3), 255–271. https://doi.org/10.1177/1362361399003003004.
Stratton, P., Lask, J., Bland, J., Nowotny, E., Evans, C., Singh, R., & Peppiatt, A. (2014). Detecting therapeutic improvement early in therapy: Validation of the SCORE-15 index of family functioning and change. Journal of Family Therapy, 36(1), 3–19. https://doi.org/10.1111/1467-6427.12022.
Stratton, P. (2005). Report on the evidence base of systemic family therapy. Association for Family Therapy. https://doi.org/10.1111/1467-6427.12033.
Timimi, S., McCabe, B., Runswick-Cole, K., & Mallett, R. (2016). What have we learned from the science of autism. Re-Thinking Autism Diagnosis Identity and Equality. https://doi.org/10.1080/09687599.2016.1221666.
Tomchek, S. D., & Dunn, W. (2007). Sensory processing in children with and without autism: A comparative study using the short sensory profile. American Journal of Occupational Therapy, 61(2), 190–200. https://doi.org/10.5014/ajot.61.2.190.
Tomeny, T. S., Barry, T. D., & Fair, E. C. (2017). Parentification of adult siblings of individuals with autism spectrum disorder: Distress, sibling relationship attitudes, and the role of social support. Journal of Intellectual and Developmental Disability, 42(4), 320–331. https://doi.org/10.4324/9781315141831-1.
Turns, B., Ramisch, J., & Whiting, J. B. (Eds.). (2019). Systemically treating autism: A clinician’s guide for empowering families. New York, NY: Routledge.
Turns, B., Eddy, B. P., & Jordan, S. S. (2016). Working with siblings of children with autism: A solution-focused approach. Australian and New Zealand Journal of Family Therapy, 37(4), 558–571. https://doi.org/10.1002/anzf.1183.
Wallace, S., Parr, J., & Hardy, A. (2013). One in a hundred: Putting families at the heart of autism research. London: Autistica. https://doi.org/10.1002/aur.161.
Wilcox, H., Dallos, R., & McKenzie, R. (2020). How families of children with a diagnosis of autism experience Multi-family therapy as part of the SAFE intervention. Manuscript in preparation
World Health Assembly, Sixty-Seventh. (2014). WHA67.8. Comprehensive and coordinated efforts for the management of autism spectrum disorders.
World Health Organisation. (2019). Autism spectrum disorder: Key Facts. Retrieved 08 July 2020 from https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders.
Acknowledgements
A special thank you to Helen Hancocks who contributed to all aspects of research into SAFE and all of our participating families from whom we learnt so much.
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This work was funded by Autistica Grant ID: 7239.
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McKenzie, R., Dallos, R., Vassallo, T. et al. Family Experience of Safe: A New Intervention for Families of Children with a Diagnosis of Autism Spectrum Disorder. Contemp Fam Ther 44, 144–155 (2022). https://doi.org/10.1007/s10591-021-09568-8
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DOI: https://doi.org/10.1007/s10591-021-09568-8