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Caregiver Burden and Relationship Satisfaction in ASD-NT Relationships

Published online by Cambridge University Press:  01 October 2020

Naomi Millar-Powell Open the ORCID record for Naomi Millar-Powell [Opens in a new window]  and
Wayne A. Warburton
Naomi Millar-Powell*
Affiliation:
Department of Psychology, Macquarie University, Sydney, New South Wales, Australia
Wayne A. Warburton
Affiliation:
Department of Psychology, Macquarie University, Sydney, New South Wales, Australia
*
Address for correspondence: Naomi Millar-Powell Email: naomirsmp@gmail.com
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Abstract

While some people with autism spectrum disorder (ASD) are unable to live independent lives, others can, and they often develop romantic relationships. Couplings where one partner has ASD and the other does not (ASD-neurotypical [NT] relationships) were the focus of this mixed-methods study. Relationship satisfaction was lower among NT participants than those with ASD. Caregiver burden was comparatively high and negatively related to relationship satisfaction. Key themes identified in the qualitative analysis include caregiver burden, loneliness, and self-care within ASD-NT relationships. These findings have clinical implications for helping professionals and people engaged in ASD-NT relationships, and highlight the need for support to assist these couplings maintain satisfying relationships.

Keywords

autism spectrum disordercaregiver burdenASD-NT relationshipsrelationship satisfaction
Type
Research Article
Information
Journal of Relationships Research , Volume 11 , 2020 , e15
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

Attwood, T. (2006). The complete guide to Asperger's syndrome. London, UK: Jessica Kingsley Publishers.Google Scholar
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.Google Scholar
Baron-Cohen, S., Wheelwright, S., Skinner, R., Martin, J., & Clubley, E. (2001). The autism-spectrum quotient (AQ): Evidence from asperger syndrome/high-functioning autism, males and females, scientists and mathematicians. Journal of Autism and Developmental Disorders, 31, 5–17.CrossRefGoogle ScholarPubMed
Barusch, A.S., & Spaid, W.M. (1989). Gender differences in caregiving: Why do wives report greater burden? The Gerontologist, 29, 667–676.CrossRefGoogle ScholarPubMed
Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46, 722–730.3.0.CO;2-6>CrossRefGoogle ScholarPubMed
Bostock-Ling, J.S., Cumming, S.R., & Bundy, A. (2012). Life satisfaction of neurotypical women in intimate relationships with an Asperger's syndrome partner: A systematic review of the literature. Journal of Relationships Research, 3, 95–105.CrossRefGoogle Scholar
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.CrossRefGoogle Scholar
Cadman, T., Eklund, H., Howley, D., Hayward, H., Clarke, H., Findon, J. … Glaser, K. (2012). Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. Journal of the American Academy of Child & Adolescent Psychiatry, 51, 879–888.CrossRefGoogle ScholarPubMed
Cho, J., & Trent, A. (2006). Validity in qualitative research revisited. Qualitative Research, 6, 319–340.CrossRefGoogle Scholar
Cooper, J.O., Heron, T.E., & Heward, W.L. (2007). Applied behavior analysis. Upper Saddle River, NJ: Pearson.Google Scholar
Dindia, K., & Timmerman, L. (2003). Accomplishing romantic relationships. In Greene, J.O. & Burleson, B.R. (Eds.), Handbook of communication and social interaction skills (pp. 685–721). Mahwah, NJ: Erlbaum.Google Scholar
Fowers, B.J., & Olson, D.H. (1989). ENRICH Marital Inventory: A discriminant validity and cross-validation assessment. Journal of Marital and Family Therapy, 15, 65–79.CrossRefGoogle ScholarPubMed
Fowers, B.J., & Olson, D.H. (1993). ENRICH Marital Satisfaction Scale: A brief research and clinical tool. Journal of Family Psychology, 7, 176–185.CrossRefGoogle Scholar
Gaugler, J.E., Davey, A., Pearlin, L.I., & Zarit, S.H. (2000). Modeling caregiver adaptation over time: The longitudinal impact of behavior problems. Psychology and Aging, 15, 437–450.CrossRefGoogle ScholarPubMed
Hagedoorn, M., Buunk, B. P., Kuijer, R. G., Wobbes, T., & Sanderman, R. (2000). Couples dealing with cancer: Role and gender differences regarding psychological distress and quality of life. Psycho-oncology, 9, 232–242.3.0.CO;2-J>CrossRefGoogle ScholarPubMed
Hiller, R.M., Young, R.L., & Weber, N. (2014). Sex differences in autism spectrum disorder based on DSM-5 criteria: Evidence from clinician and teacher reporting. Journal of Abnormal Child Psychology, 42, 1381–1393.CrossRefGoogle ScholarPubMed
Hofvander, B., Delorme, R., Chaste, P., Nyden, A., Wentz, E., Stahlberg, O., … Leboyer, M. (2009). Psychiatric and psychosocial problems in adults with normal-intelligence and autism spectrum disorders. BMC Psychiatry, 9, 1–9.CrossRefGoogle ScholarPubMed
Howlin, P. (2004) Autism and Aspergers syndrome: Preparing for adulthood. New York, NY: Routledge.CrossRefGoogle Scholar
Lau, W., & Peterson, C.C. (2011). Adults and children with Asperger syndrome: Exploring adult attachment style, marital satisfaction and satisfaction with parenthood. Research in Autism Spectrum Disorders, 5, 392–399.CrossRefGoogle Scholar
Lyons, K.S., Zarit, S.H., & Townsend, A.L. (2000). Families and formal service usage: Stability and change in patterns of interface. Aging & Mental Health, 4, 234–243.CrossRefGoogle Scholar
MacDuff, G.S., Krantz, P.J., & McClannahan, L.E. (2001). Prompts and prompt-fading strategies for people with autism. In Maurice, C., Green, G., & Foxx, R.M. (Eds.), Making a difference: Behavioral intervention for autism (pp. 37–50). PRO-ED.Google Scholar
Maenner, M.J., Shaw, K.A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., … Dietz, P.M. (2020). Prevalence of autism spectrum disorder among children aged 8 years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016. Morbidity and Mortality Weekly Report - Surveillance Summaries, 69, 1–12.Google ScholarPubMed
Mendes, E.A. (2015). Marriage and lasting relationships with Asperger's syndrome (autism spectrum disorder): Successful strategies for couples or counselors. London, UK: Jessica Kingsley Publishers.Google Scholar
Morano, C.L., & Sanders, S. (2006). Exploring differences in depression, role captivity, and self-acceptance in Hispanic and non-Hispanic adult children caregivers. Journal of Ethnic and Cultural Diversity in Social Work, 14, 27–46.CrossRefGoogle Scholar
Noonan, A.E., & Tennstedt, S.L. (1997). Meaning in caregiving and its contribution to caregiver well-being. The Gerontologist, 37, 785–794.CrossRefGoogle ScholarPubMed
Pearlin, L.I., Mullan, J.T., Semple, S.J., & Skaff, M.M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–594.CrossRefGoogle ScholarPubMed
Perz, J., Ussher, J.M., Butow, P., & Wain, G. (2011). Gender differences in cancer carer psychological distress: an analysis of moderators and mediators. European Journal of Cancer Care, 20, 610–619.CrossRefGoogle ScholarPubMed
Pollman, M.M.H., Finkenauer, C., & Begeer, S. (2010). Mediators of the link between autistic traits and relationship satisfaction in a non-clinical sample. Journal of Autism and Developmental Disorders, 40, 470–478.CrossRefGoogle Scholar
Reis, H.T. (2007). Steps toward the ripening of relationship science. Personal Relationships, 14, 123.CrossRefGoogle Scholar
Reis, H.T., & Shaver, P. (1988). Intimacy as an interpersonal process. In Duck, S., Hay, D.F., Hobfoll, S.E., Ickes, W., & Montgomery, B.M. (Eds.), Handbook of personal relationships: Theory, research and interventions (pp. 367–389). Oxford, England: Wiley.Google Scholar
Renty, J., & Roeyers, H. (2007). Individual and marital adaptation in men with autism spectrum disorder and their spouses: The role of social support and coping strategies. Journal of Autism & Developmental Disorders, 37, 1247–1255.CrossRefGoogle ScholarPubMed
Rodakowski, J., Skidmore, E.R., Rogers, J.C., & Schulz, R. (2013). Does social support impact depression in caregivers of adults ageing with spinal cord injuries? Clinical Rehabilitation, 27, 565–575.CrossRefGoogle ScholarPubMed
Ryan, S., & Räisänen, U. (2008). ‘It's like you are just a spectator in this thing’: Experiencing social life the ‘aspie’ way. Emotion, Space and Society, 1, 135–143.CrossRefGoogle Scholar
Slater-Walker, G., & Slater-Walker, C. (2002).An Asperger marriage. London, UK: Jessica Kingsley Publishers.Google Scholar
Ussher, J.M., & Perz, J. (2010). Gender differences in self-silencing and psychological distress in informal cancer carers. Psychology of Women Quarterly, 34, 228– 242.Google Scholar
Wilson, B., Beamish, W., Hay, S., & Attwood, T. (2014). Prompt dependency beyond childhood: Adults with Asperger's syndrome and intimate relationships. Journal of Relationships Research, 5, e11.CrossRefGoogle Scholar