Advertisement

Parenting an Adult with High-Functioning Autism Spectrum Disorder

  • Susan LowingerEmail author
  • Shmuela Weidberg
Chapter
Part of the Autism and Child Psychopathology Series book series (ACPS)

Abstract

This chapter presents the dilemmas, doubts, feelings, and experiences of parents of adults with ASD. The following topics are addressed: the parents’ responses to a diagnosis of autism in their adult child; the emotional experience of the parent of an adult with HFA, the parent’s concerns and fears, the daily experience of living with an adult on the spectrum, the role of the parent as an intermediary agent, the effects of social support and the difficulties in obtaining services. It is essential to address the needs of parents of adults with HF-ASD. Parental emotional distress has an impact on the lives of the parents themselves and on their adult children. Distressed parents have less energy to take care of their children and respond to their needs. It is harder for them to function effectively with the service systems, to benefit from these services, and to follow their recommendations. More support services are necessary during this critical period of life as well as extensive and comprehensive dissemination of information.

Keywords

HF-ASD—adult Parenting Service system Support-processes Unmet needs 

References

  1. Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youth with autism, Down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109(3), 237–254.PubMedCrossRefGoogle Scholar
  2. Barker, E. T., Hartley, S. L., Seltzer, M. M., Floyd, F. J., Greenberg, J. S., & Orsmond, G. I. (2011). Trajectories of emotional well-being in mothers of adolescents and adults with autism. Developmental Psychology, 47, 551–561.  https://doi.org/10.1037/a0021268.PubMedPubMedCentralCrossRefGoogle Scholar
  3. Barroso, N. E., Mendez, L., Graziano, P. A., & Bagner, D. M. (2018). Parenting stress through the lens of different clinical groups: A systematic review and meta-analysis. Journal of Abnormal Child Psychology, 46(3), 449–461.  https://doi.org/10.1007/s10802-017-0313-6.PubMedPubMedCentralCrossRefGoogle Scholar
  4. Ben-Sasson, A., & Podoly, T. (2014). In S. Lowinger (Ed.), Beyond the spectrum: Recent developments in the assessment and treatment of children with autistic spectrum disorders (pp. 50–105). Kiryat Bialik, Israel: Ach Publishing.Google Scholar
  5. Benson, P. R. (2014). Coping and psychological adjustment among mothers of children with ASD: An accelerated longitudinal study. Journal of Autism and Developmental Disorders, 44(8), 1793–1807.  https://doi.org/10.1007/s10803-014-2079-9.PubMedCrossRefGoogle Scholar
  6. Benson, P. R., & Karlof, K. L. (2017). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disorders, 39(2), 350–362.  https://doi.org/10.1007/s10803-008-0632-0.CrossRefGoogle Scholar
  7. Blacher, J., Kraemer, B., & Howell, E. (2010). Family expectations and transition experiences for young adults with severe disabilities: Does syndrome matter? Advances in Mental Health and Learning Disabilities, 4(1), 3–16.  https://doi.org/10.5042/amhld.2010.0052.CrossRefGoogle Scholar
  8. Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8(4), 409–423.  https://doi.org/10.1177/1362361304047224.PubMedCrossRefGoogle Scholar
  9. Browning, A., & Caulfield, L. (2011). The prevalence and treatment of people with Asperger’s syndrome in the criminal justice system. Criminology and Criminal Justice, 11(2), 165–180.  https://doi.org/10.1177/1748895811398455.CrossRefGoogle Scholar
  10. Charles, S. T. (2010). Strength and vulnerability integration (SAVI): A mode; of emotional well-being across adulthood. Psychological Bulletin, 136(6), 1068–1091.PubMedPubMedCentralCrossRefGoogle Scholar
  11. Charles, S. T., Luong, G., Almeida, D. M., Ryff, C., Sturm, M., & Love, G. (2010). Fewer ups and downs: Daily stressors mediate age differences in negative affect. Journal of Gerontology Series B: Psychological Sciences and Social Sciences, 65(3), 279–286.  https://doi.org/10.1093/geronb/gbq002.CrossRefGoogle Scholar
  12. Cheak-Zamora, N. C., & Teti, M. (2015). “You think it’s hard now … It gets much harder for our children”: Youth with autism and their caregiver’s perspectives of health care transition services. Autism, 19(8), 992–1001.  https://doi.org/10.1177/1362361314558279.PubMedCrossRefGoogle Scholar
  13. Chen, J., Cohn, E. S., & Orsmond, G. I. (2018). Parents’ future visions for their autistic transition-age youth: Hopes and expectations. Autism.  https://doi.org/10.1177/1362361318812141.PubMedCrossRefGoogle Scholar
  14. Dein, K., & Woodbury-Smith, M. (2010). Asperger syndrome and criminal behaviour. Advances in Psychiatric Treatment, 16, 37–43.  https://doi.org/10.1192/apt.bp.107.005082.CrossRefGoogle Scholar
  15. Del Bianco, T., Ozturk, Y., Basadonne, I., Mazzoni, N., & Venuti, P. (2018). The thorn in the dyad: A vision on parent-child relationship in autism spectrum disorder. Europe’s Journal of Psychology14(3), 695–709.  https://doi.org/10.5964/ejop.v14i3.1453.PubMedPubMedCentralCrossRefGoogle Scholar
  16. DePape, A. M., & Lindsay, S. (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583.  https://doi.org/10.1177/1049732314552455.PubMedCrossRefGoogle Scholar
  17. Dolev, S. (2014). Parental acceptance of their child’s autism spectrum diagnosis. In S. Lowinger (Ed.), Beyond the spectrum: Recent developments in the assessment and treatment of children with autistic spectrum disorders (pp. 9–33). Kiryat Bialik, Israel: Ach Publishing.Google Scholar
  18. Eapen, V., Črnčec, R., Walter, A., & Tay, K. P. (2014). Conceptualisation and development of a quality of life measure for parents of children with Autism Spectrum Disorder. Autism Research and Treatment, 1–11. http://dx.doi.org/10.1155/2014/160783.
  19. Eapen, V., & Guan, J. (2016). Parental quality of life in Autism Spectrum Disorder: Current status and future directions. Acta Psychopathologica, 2(1), 1–14.CrossRefGoogle Scholar
  20. Ekas, N. V., Lickenbrock, D. M., & Whitman, T. L. (2010). Optimism, social support, and well-being in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40, 1274–1284.  https://doi.org/10.1007/s10803-010-0986-y.PubMedCrossRefGoogle Scholar
  21. Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L., & Pellicano, E. (2017). ‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum. Autism, 22(5), 571–584.  https://doi.org/10.1177/1362361316687989.PubMedCrossRefGoogle Scholar
  22. Gerhardt, P. F., & Lainer, I. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy, 41, 37–45.  https://doi.org/10.1007/s10879-010-9160-2.CrossRefGoogle Scholar
  23. Green, S. A., & Ben-Sasson, A. (2010). Anxiety disorders and sensory over-responsivity in children with autism spectrum disorders: Is there a causal relationship? Journal of Autism and Developmental Disorders, 40(12), 1495–1504.  https://doi.org/10.1007/s10803-010-1007-x.PubMedPubMedCentralCrossRefGoogle Scholar
  24. Greenfield, E. A., & Marks, M. M. (2006). Linked lives: Adults children’s problems and their parents’ psychological and relational well-being. Journal of Marriage and Family, 68, 442–454.  https://doi.org/10.1111/j.1741-3737.2006.00263.x.PubMedCrossRefGoogle Scholar
  25. Ha, J. W., Hong, J., Seltzer, M. M., & Greenberg, J. S. (2008). Age and gender differences in the well-being of midlife and ageing parents with children with mental health or developmental problems: Report of a national study. Journal of Health and Social Behavior, 49, 301–316.  https://doi.org/10.1177/002214650804900305.PubMedPubMedCentralCrossRefGoogle Scholar
  26. Han, G. T., Tomarken, A. J., & Gotham, K. O. (2019). Social and nonsocial reward moderate the relation between autism symptoms and loneliness in adults with ASD, depression, and controls. Autism Research.  https://doi.org/10.1002/aur.2088.PubMedPubMedCentralCrossRefGoogle Scholar
  27. Hare, D. J., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family caregivers supporting adults with autistic spectrum disorders. Autism, 8, 425–444.  https://doi.org/10.1177/1362361304047225.PubMedCrossRefGoogle Scholar
  28. Hegesh, R. (2010). Drug therapy for children on the autistic spectrum. In S. Lowinger (Ed.), Communication: Treatment of children with communication difficulties during the elementary school years (pp. 79–107). Kiryat Bialik, Israel: Ach Publishers.Google Scholar
  29. Herrema, R., Garland, D., Osborne, M., Freeston, M., Honey, E., & Rodgers, J. (2017). Mental wellbeing of family members of autistic adults. Journal of Autism and Developmental Disorders, 47(11), 3589–3599.  https://doi.org/10.1007/s10803-017-3269-z.PubMedPubMedCentralCrossRefGoogle Scholar
  30. Hewitt, A. S., Stancliffe, S. J., Hall-Lande, J., Nord, D., Pettingrell, S. L., Hamre, K., & Hallas-Muchow, L. (2017). Characteristics of adults with autism spectrum disorder who use residential services and supports through adult disability services in the United States. Research in Autism Spectrum Disorders, 34, 1–9.  https://doi.org/10.1016/j.rasd.2016.11.007.CrossRefGoogle Scholar
  31. Holmes, L. G., Kirby, A. V., Strassberg, D. S., & Himle, M. B. (2018). Parent expectations and preparatory activities as adolescents with ASD transition to adulthood. Journal of Autism and Developmental Disorders, 48(9), 2925–2937.  https://doi.org/10.1007/s10803-018-3545-6.PubMedCrossRefPubMedCentralGoogle Scholar
  32. Ingersoll, B., & Hambrick, D. Z. (2011). The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 337–344.  https://doi.org/10.1016/j.rasd.2010.04.017.CrossRefGoogle Scholar
  33. Kirby, A. V., Schneider, M., Diener, M., & Henderson, J. (2018). “Who is going to pay for the wi-fi?” Exploring adulthood from the perspectives of autistic youth. Autism in Adulthood: Knowledge, Practice, and Policy, 1(1), 1–7.  https://doi.org/10.1089/aut.2018.0008.CrossRefGoogle Scholar
  34. Krauss, M. W., Mailick, M., & Jacobson, H. T. (2005). Adults with autism living at home or in non-family settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49, 111–124.  https://doi.org/10.1111/j.1365-2788.2004.00599.x.PubMedCrossRefGoogle Scholar
  35. Lounds, J., Seltzer, M. M., Greenberg, J. S., & Shattuck, P. (2007). Transition and change in adolescents and young adults with autism: Longitudinal effects on maternal well-being. American Journal on Mental Retardation, 112, 401–417.PubMedCrossRefGoogle Scholar
  36. Lowinger, S. (2010). The perspective of the parents. In S. Lowinger (Ed.), Communication: Treatment of children with communication difficulties during the elementary school years (pp. 235–265). Kiryat Bialik, Israel: Ach Publishing.Google Scholar
  37. Lowinger, S., & Prag, I. (2014). Parent groups of children with ASD. In S. Lowinger (Ed.), Beyond the spectrum: Recent developments in the assessment and treatment of children with autism spectrum disorders (pp. 34–49). Kiryat Bialik, Israel: Ach Publishing.Google Scholar
  38. Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum. Journal of Autism and Developmental Disorders, 37(9), 1795–1802.  https://doi.org/10.1007/s10803-006-0314-8.PubMedCrossRefGoogle Scholar
  39. Marsack, C. (2016). An examination of quality of life of parents of adult children diagnosed with Autism Spectrum Disorder. Wayne State University Dissertations. 1461. http://digitalcommons.wayne.edu/oa_dissertations/1461.
  40. Mazzone, L., Ruta, L., & Reale, L. (2012). Psychiatric comorbidities in Asperger syndrome and high-functioning autism: Diagnostic challenges. Annals of General Psychiatry, 11(1), 16.  https://doi.org/10.1186/1744-859X-11-16.PubMedPubMedCentralCrossRefGoogle Scholar
  41. McIntyre, L. L., & Brown, M. (2018). Examining the utilisation and usefulness of social support for mothers with young children with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43(1), 93–101.  https://doi.org/10.3109/13668250.2016.1262534.CrossRefGoogle Scholar
  42. McStay, R. L., Dissanayake, C., Scheeren, A. M., Koot, H. M., & Begeer, S. M. (2014). Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism, 18(5), 502–510.  https://doi.org/10.1177/1362361313485163.PubMedCrossRefGoogle Scholar
  43. Meier, S. M., Petersen, L., Schendel, D. E., Mattheisen, M., Mortensen, P. B., & Mors, O. (2015). Obsessive-compulsive disorder and autism spectrum disorders: Longitudinal and offspring risk. PLoS ONE, 10(11), e0141703.  https://doi.org/10.1371/journal.pone.0141703.PubMedPubMedCentralCrossRefGoogle Scholar
  44. Merz, E. M., & Huxhold, O. (2010). Wellbeing depends on social relationship characteristics: Comparing different types and providers of support to older adults. Ageing & Society, 30, 843–857.  https://doi.org/10.1017/S0144686X10000061.CrossRefGoogle Scholar
  45. Morrell, M. D., & Palmer, A. (2006). Parents across the autism spectrum: Unexpected lessons we have learned. Philadelphia, PA: Jessica Kingsley.Google Scholar
  46. Murphy, D. (2010). Understanding offenders with autism-spectrum disorders: What can forensic services do? Advances in Psychiatric Treatment, 16, 44–46.  https://doi.org/10.1192/apt.bp.109.006775.CrossRefGoogle Scholar
  47. Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment12, 745–762.  https://doi.org/10.2147/NDT.S100634.
  48. Picardi, A., Gigantesco, A., Tarolla, E., Stoppioni, V., Cerbo, R., Cremonte, M., … Nardocci, F. (2018). Parental burden and its correlates in families of children with autism spectrum disorder: A multicentre study with two comparison groups. Clinical Practice and Epidemiology in Mental Health14, 143–176.  https://doi.org/10.2174/1745017901814010143.CrossRefGoogle Scholar
  49. Pisula, E., Pudło, M., Słowińska, M., Kawa, R., Strząska, M., Banasiak, A., & Wolańczyk, T. (2016). Behavioral and emotional problems in high-functioning girls and boys with autism spectrum disorders: Parents’ reports and adolescents’ self-reports. Autism: The International Journal of Research and Practice21(6), 738–748.  https://doi.org/10.1177/1362361316675119.PubMedPubMedCentralCrossRefGoogle Scholar
  50. Poslawsky, I. E., Naber, F. B., Van Daalen, E., & Van Engeland, H. (2014). Parental reaction to early diagnosis of their children’s autism spectrum disorder: An exploratory study. Child Psychiatry and Human Development, 45(3), 294–305.  https://doi.org/10.1007/s10578-013-0400-z.PubMedCrossRefGoogle Scholar
  51. Pottie, C. G., Cohen, J., & Ingram, K. M. (2009). Parenting a child with autism: Contextual factors associated with enhanced daily parental mood. Journal of Pediatric Psychology, 34, 419–429.  https://doi.org/10.1093/jpepsy/jsn094.PubMedCrossRefGoogle Scholar
  52. Rapoport, J., Chavez, A., Greenstein, D., Addington, A., & Gogtay, N. (2009). Autism spectrum disorders and childhood-onset schizophrenia: Clinical and biological contributions to a relation revisited. Journal of the American Academy of Child and Adolescent Psychiatry, 48(1), 10–18.  https://doi.org/10.1097/CHI.0b013e31818b1c63.PubMedPubMedCentralCrossRefGoogle Scholar
  53. Rodgers, J., Hodgson, A., Shields, K., Wright, C., Honey, E., & Freeston, M. (2016). Towards a treatment for intolerance of uncertainty in young people with autism spectrum disorder: Development of the Coping with Uncertainty in Everyday Situations (CUES©) Programme. Journal of Autism and Developmental Disorders, 47(12), 3959–3966.  https://doi.org/10.1007/s10803-016-2924-0.PubMedCentralCrossRefGoogle Scholar
  54. Schalock, R. L., Bonham, G. S., & Verdugo, M. A. (2008). The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities. Evaluation and Program Planning, 31(2), 181–190.  https://doi.org/10.1016/j.evalprogplan.2008.02.001.CrossRefPubMedGoogle Scholar
  55. Shattuck, P. T., Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., Bolt, D., Kring, S., … Lord, C. (2007). Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1735–1747.  https://doi.org/10.1007/s10803-006-0307-7.PubMedPubMedCentralCrossRefGoogle Scholar
  56. Shepherd, D., Landon, J., & Goedeke, S. (2018). Symptom severity, caregiver stress and intervention helpfulness assessed using ratings from parents caring for a child with autism. Autism, 22(5), 585–596.  https://doi.org/10.1177/1362361316688869.PubMedCrossRefGoogle Scholar
  57. Siklos, S., & Kearns, K. A. (2006). Assessing need for social support in parents of children with autism and Down syndrome. Journal of Autism and Developmental Disorders, 36(7), 921–933.  https://doi.org/10.1007/s10803-006-0129-7.PubMedCrossRefGoogle Scholar
  58. Singer, G. H. S. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal of Mental Retardation, 111, 155–169.PubMedCrossRefGoogle Scholar
  59. Smith, L. E., Greenberg, J. S., & Seltzer, M. M. (2012). Social support and well-being at mid-life among mothers of adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 1818–1826.  https://doi.org/10.1007/s10803-011-1420-9.PubMedPubMedCentralCrossRefGoogle Scholar
  60. Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism of Developmental Disorders, 40, 167–178.  https://doi.org/10.1007/s10803-009-0844-y.CrossRefGoogle Scholar
  61. Spain, D., Sin, J., Linder, K. B., McMahon, J., & Happé, F. (2018). Social anxiety in autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 52, 51–68.  https://doi.org/10.1016/j.rasd.2018.04.007.CrossRefGoogle Scholar
  62. Syu, Y. C., & Lin, L. (2018). Sensory over-responsivity, loneliness, and anxiety in Taiwanese adults with autism spectrum disorder. Occupational Therapy International, 1, 1–7.  https://doi.org/10.1155/2018/9165978.CrossRefGoogle Scholar
  63. Tantam, D. (1988). Lifelong eccentricity and social isolation: II: Asperger’s syndrome or schizoid personality disorder? British Journal of Psychiatry, 153(6), 783–791.  https://doi.org/10.1192/bjp.153.6.783.PubMedCrossRefGoogle Scholar
  64. Taylor, J., & Seltzer, M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorder during transition to adulthood. Journal of Autism and Developmental Disorders, 41, 566–574.  https://doi.org/10.1007/s10803-010-1070-3.PubMedPubMedCentralCrossRefGoogle Scholar
  65. Thompson, C., Bölte, S., Falkmer, T., & Girdler, S. (2018). To be understood: Transitioning to adult life for people with Autism Spectrum Disorder. PLoS ONE, 13(3), e0194758.  https://doi.org/10.1371/journal.pone.0194758.PubMedPubMedCentralCrossRefGoogle Scholar
  66. Van Bourgondien, M. E., Dawkins, T., & Marcus, L. (2014). Families of adults with autism spectrum disorders. In F. R. Volkmar, B. Reichow, & J. McPartland (Eds.), Adolescents and adults with Autism Spectrum Disorders (pp. 15–40). New York: Springer.  https://doi.org/10.1007/978-1-4939-0506-5_2.CrossRefGoogle Scholar
  67. van Steensel, F. J. A., & Heeman, E. J. (2017). Anxiety levels in children with autism spectrum disorder: A meta-analysis. Journal of Child and Family Studies, 26(7), 1753–1767.  https://doi.org/10.1007/s10826-017-0687-7.PubMedPubMedCentralCrossRefGoogle Scholar
  68. Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49.  https://doi.org/10.1016/j.rasd.2015.11.008.CrossRefGoogle Scholar
  69. Yirmiya, N., Seidman, I., Koren-Karie, N., Oppenheim, D., & Dolev, S. (2015). Stability and change in resolution of diagnosis among parents of children with autism spectrum disorder: Child and parental contributions. Development and Psychopathology27(4 pt1), 1045–1057.‏  https://doi.org/10.1017/S095457941500067X.PubMedCrossRefGoogle Scholar
  70. Yorke, I., White, P., Weston, A., Rafla, M., Charman, T., & Simonoff, E. (2018). The association between emotional and behavioral problems in children with autism spectrum disorder and psychological distress in their parents: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 48(10), 3393–3415.  https://doi.org/10.1007/s10803-018-3605-y.PubMedPubMedCentralCrossRefGoogle Scholar
  71. Zaidman-Zait, A., Mirenda, P., Duku, E., Vaillancourt, T., Smith, I. M., Szatmari, P., … Zwaigenbaum, L. (2017). Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism21(2), 155–166.  https://doi.org/10.1177/1362361316633033.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Kishurim ClinicJerusalemIsrael
  2. 2.EFFIE: The Israel Asperger and HFASD OrganizationJerusalemIsrael

Personalised recommendations