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Rethinking Autism: A Comprehensive Analysis of Family Quality of Life in the Context of Autism Spectrum Disorders

Comprehensive Analysis of Family Quality of Life in the Context of Autism Spectrum Disorders
Comprehensive Analysis of Family Quality of Life in the Context of Autism Spectrum Disorders

In the evolving landscape of intellectual and developmental disabilities, particularly Autism Spectrum Disorder (ASD), understanding and support are paramount. The contemporary approach focuses not on 'fixing' but on nurturing and supporting individuals with ASD to maximize their potential and quality of life. This detailed exploration considers the pivotal role families play in shaping the lives of children with ASD, comparing their experiences with families managing other developmental disorders.

Family-Centered Approach and Empowerment

The shift from a purely individual-centric view to a family-centered perspective highlights the profound impact of the family unit in managing ASD. Recognizing the family as the primary socializing force, research emphasizes the critical role of early diagnosis and specialized care. Current frameworks advocate for empowering families, emphasizing choice and promoting a collaborative dynamic between professionals and families. This paradigm shift not only facilitates better developmental outcomes but also enhances the overall well-being of the family unit.

The Complexities of Family Life with ASD

Families with ASD face unique challenges that can significantly impact their quality of life. These include navigating the complexities of the diagnosis, adjusting expectations, and managing the heightened demands it places on family dynamics. The presence of ASD can amplify stress, requiring adjustments in family roles and expectations. Such dynamics necessitate a nuanced understanding of family needs and tailored interventions that address both the individual with ASD and their family's well-being.

Empirical Findings and Methodological Considerations

The study utilizes the Family Quality of Life Scale (FQOL) to systematically assess and compare the quality of life among families with ASD and those dealing with other developmental disorders. The research methodically examines the differential impacts on family life, exploring various dimensions such as family interaction, parental roles, health and safety, and overall support systems.

Key Insights from the Study

  1. Differential Impact: The study highlights specific areas where families with ASD differ significantly from those with other developmental disorders. These areas include greater needs in support and resources, heightened stress levels, and more pronounced discrepancies between desired outcomes and available support.

  2. Support Systems and Resources: Families often report inadequate support systems, which can lead to increased stress and isolation. The study identifies a critical gap in tailored resources and support for families, pointing to the need for more focused interventions that address the unique challenges of families with ASD.

  3. Parental Stress and Coping: Parents of children with ASD frequently experience higher levels of stress compared to parents of children with other developmental disorders. This heightened stress can affect the overall family dynamics and quality of life, underscoring the importance of supportive measures that target both children and their caregivers.

  4. Age-Related Trends: The influence of the child’s age on family quality of life reveals that younger children's families tend to place more importance on all life quality dimensions. This importance generally decreases as the child ages, suggesting a dynamic adjustment of family expectations and needs over time.

Implications for Practice and Policy

The findings advocate for a more integrated approach to supporting families with ASD. It calls for:

  • Enhanced Support Systems: Development of comprehensive support networks that provide tailored resources to meet the diverse needs of families.

  • Professional Training: Increased emphasis on training for professionals in health, education, and social services to better support families with ASD.

  • Community Engagement: Encouragement of community involvement and awareness to foster a more inclusive environment for individuals with ASD and their families.

Conclusions and Future Directions

The study emphasizes the importance of a nuanced approach to understanding and supporting families with ASD. It highlights the need for ongoing research to refine support strategies and improve the quality of life for these families. Future studies should aim to expand the empirical base, incorporate qualitative measures, and continuously adapt to the evolving needs of families affected by ASD.

In conclusion, this comprehensive analysis underlines the critical need for a family-centered, empowering approach in managing ASD. By focusing on the families' needs and potential for empowerment, we can foster an environment that not only supports but also enhances the lives of individuals with ASD and their families.


  1. Allen and Petr, 1996 R. Allen, C. Petr Toward developing standards and measurements for family centered practice in family support programs G. Singer, L. Powers, A. Olson (Eds.), Redefining family support: Innovations in public-private partnerships, Brooks Publishing Co (1996), pp. 57-86 Google Scholar

  2. Baña, 2015 M. Baña El rol de la familia en la calidad de vida y la autodeterminación de las personas con trastorno del espectro del autismo Ciencias Psicológicas, 9 (2) (2015), pp. 323-336 Google Scholar

  3. Badia i Corbella, 2005 M. Badia i Corbella Calidad de vida familiar: la familia como apoyo a la persona con parálisis cerebral Intervención Psicosocial, 14 (3) (2005), pp. 327-341 〈〉 Google Scholar

  4. Balcells-Balcells et al., 2019 A. Balcells-Balcells, C. Giné, J. Guàradia-Olmos, J.A. Summers, J.M. Mas Impact of supports and partnership on family quality of life Research in Developmental Disabilities, 85 (2019), pp. 50-60, 10.1016/j.ridd.2018.10.006 View PDFView articleView in ScopusGoogle Scholar

  5. Bello-Escamilla et al., 2017 N. Bello-Escamilla, J. Rivadeneira, M. Concha-Toro, A. Soto-Caro, X. Díaz-Martínez Escala de calidad de vida familiar: validación y análisis en población chilena Universitas Psychologica, 16 (4) (2017), pp. 1-10, 10.11144/Javeriana.upsy16-4.ecvf View at publisher View in ScopusGoogle Scholar

  6. Benito and Carpio, 2017 E. Benito, C. Carpio Families with a disabled member: Impact and family education Procedia-Social and Behavoiral Sciencies, 237 (2017), pp. 418-425, 10.1016/j.sbspro.2017.02.084 View at publisher This article is free to access. Google Scholar

  7. Boehm, 2017 T.L. Boehm Predictors of family quality of life among parents of children and adults with intellectual disability (Doctoral Thesis; No. Etd-03232017-115400), Vanderbilt University (2017) Google Scholar

  8. Brun, 2013 J.M. Brun Comprensión del entorno familiar de los niños con autismo Revista Délelőtt Psicopatología York Salud Mental del niño York del adolescente, 22 (2013), pp. 43-49 〈〉 Google Scholar

  9. Canal et al., 2010 Canal, R., Martín, M. V., Bohórquez, D., Guisuraga, Z., Herráez, L., Herráez, M. … Posada, M., (2010). La detección precoz del autismo y el impacto en la calidad de vida de las familias. En M. A. Verdugo, M. Crespo, & T. Nieto (Coords.), Aplicación del paradigma de calidad de vida. VII Seminario de Actualización Metodológica en Investigación sobre Discapacidad. Salamanca. Google Scholar

  10. Corcoran et al., 2015 J. Corcoran, A. Berry, S. Hill The lived experience of US parents of children with autism spectrum disorders: A systematic review and meta-synthesis Journal of Intellectual Disabilities, 19 (4) (2015), pp. 356-366, 10.1177/1744629515577876 View at publisher View in ScopusGoogle Scholar

  11. Córdoba-Andrade et al., 2008 L. Córdoba-Andrade, J. Gómez-Benito, M.A. Verdugo-Alonso Calidad de vida familiar en personas con discapacidad: un análisis comparativo Universitas Psychologica, 7 (2) (2008), pp. 369-383 〈〉 View in ScopusGoogle Scholar

  12. Critchley et al., 2021 E. Critchley, M. Cuadros, I. Harper, H. Smith-Howell, M. Rogish A parent-sibling dyadic interview to explore how an individual with autism spectrum disorder can impact family dynamics Research in Developmental Disabilities, 111 (2021), Article 103884, 10.1016/j.ridd.2021.103884 View PDFView articleView in ScopusGoogle Scholar

  13. Cuevas et al., 2018 M.M. Cuevas, R. Salcedo, F. Díaz Discapacidad y familia en contexto multiculturales. Un estudio sobre la realidad en la ciudad autónoma de Ceuta Pedagogía Social Revista Interuniversitaria, 33 (2018), pp. 111-126, 10.7179/PSRI_2019.33.08 View at publisher Google Scholar

  14. Durán et al., 2016 M. Durán, M. García-Fernández, J. Fernández, B. Sanjurjo Afrontamiento, estrés parental y calidad de vida de los cuidadores principales de personas con TEA Revista Délelőtt Estudios e Investigación Enōsis Psicología York Educación, 3 (1) (2016), pp. 60-68, 10.17979/reipe.2016.3.1.1749 View at publisher Google Scholar

  15. Fernández et al., 2015 A. Fernández, D. Montero, N. Martínez, J.R. Orcasitas, M. Villaescusa Calidad de vida familiar: Marco de referencia, evaluación e intervención Siglo Cero, 46 (2) (2015), pp. 7-29 〈〉 View at publisher CrossRefView in ScopusGoogle Scholar

  16. Garrido et al., 2015 D. Garrido, G. Carballo, V. Franco, R. García-Retamero Dificultades de comprensión del lenguaje en niños no verbales con trastornos del espectro autista y sus implicaciones en la calidad de vida familiar Revista Délelőtt Neurología, 60 (5) (2015), pp. 207-214, 10.33588/rn.6005.2014226 View at publisher View in ScopusGoogle Scholar

  17. Godoy et al., 2015 G. Godoy, D. Manghi, G. Soto, I. Aranda Recursos comunicativos de un joven con autismo: enfoque multimodal para mejorar la calidad de vida Actualidades Investigativas Enōsis Educación, 15 (1) (2015), pp. 249-272 〈〉 View at publisher CrossRefView in ScopusGoogle Scholar

  18. Gorlin et al., 2016 J.B. Gorlin, C.P. McAlpine, A. Garwick, E. Wieling Severe childhood autism: The family lived experience Journal of Pediatric Nursing, 31 (6) (2016), pp. 580-597, 10.1016/j.pedn.2016.09.002 View at publisher Google Scholar

  19. Gràcia et al., 2020 M. Gràcia, C. Simón, F. Salvador-Beltrán, A.L. Adam, J.M. Mas, C. Giné, M. Dalmau The transition process from center-based programmes to family-centered practices in Spain: A multiple case study Early Child Development and Care, 190 (14) (2020), pp. 2192-2204, 10.1080/03004430.2018.1564916 View at publisher View in ScopusGoogle Scholar

  20. Hassanein et al., 2021 E.E.A. Hassanein, T.R. Adawi, E.S. Johnson Social support, resilience, and quality of life for families with children with intellectual disabilities Research in Developmental Disabilities, 112 (2021), Article 102930, 10.1016/j.ridd.2021.103910 View at publisher Google Scholar

  21. Hoffman et al., 2006 L. Hoffman, J. Marquis, D. Poston, J.A. Summers, A. Turnbull Assessing family outcomes: Psychometric evaluation of the Beach Center Family Quality of Life Scale Journal of Marriage and Family, 68 (4) (2006), pp. 1069-1083, 10.1111/j.1741-3737.2006.00314.x View at publisher View in ScopusGoogle Scholar

  22. Hsiao et al., 2017 Y.-J. Hsiao, K. Higgins, T. Pierce, P.J.S. Whitby, R.D. Tandy Parental stress, family quality of life, and family-teacher partnerships: Families of children with autism spectrum disorder Research in Developmental Disabilities, 70 (2017), pp. 152-162, 10.1016/j.ridd.2017.08.013 View PDFView articleView in ScopusGoogle Scholar

  23. Jones et al., 2017 S. Jones, E. Bremer, M. Lloyd Autism spectrum disorder: Family quality of life while waiting for intervention services Quality of Life Research, 26 (2017), pp. 331-342, 10.1007/s11136-016-1382-7 View at publisher View in ScopusGoogle Scholar

  24. Losada-Puente et al., 2021 L. Losada-Puente, M.J. Fiuza, M. Baña What Defines Inclusion in Higher Education Institutions? Validation of an Instrument Based on the ‘Index for Inclusion’ International Journal of Disability, Development and Education, 1 (2021), pp. 1-15, 10.1080/1034912X.2021.1992752 View at publisher Google Scholar

  25. Lumani and Córdoba, 2014 N. Lumani, L. Córdoba Satisfacción con la calidad de vida familiar y con los servicios en familias de niños y adolescentes con discapacidad Siglo Cero, 45 (249) (2014), pp. 41-55 〈〉 Google Scholar

  26. McStay et al., 2014 R.L. McStay, D. Trembath, C. Dissanayake Maternal stress and family quality of life in response to raising a child with autism: From preschool to adolescence Research in Developmental Disabilities, 35 (11) (2014), pp. 3119-3130, 10.1016/j.ridd.2014.07.043 View PDFView articleView in ScopusGoogle Scholar

  27. Orte et al., 2015 C. Orte, L. Ballester, R. Pozo, M. Vives El mantenimiento de los cambios en un programa de prevención familiar basado en la evidencia. Un estudio longitudinal de familias Pedagogía Social Revista Interuniversitaria, 29 (2015), pp. 113-127, 10.7179/PSRI_2017.29.08 View at publisher Google Scholar

  28. Ortiz-Quiroga et al., 2018 D.M. Ortiz-Quiroga, Y. Ariza, H. Pachajoa Calidad de vida de familias de niños y adolescentes con discapacidad asociada a defectos congénitos Universitas Psychologica, 17 (1) (2018), pp. 1-10, 10.11144/Javeriana.upsy17-1.cvfn View at publisher View in ScopusGoogle Scholar

  29. Pallisera, 2020 M. Pallisera El apoyo personalizado a personas con discapacidad intelectual: funciones y formación de los profesionales socioeducativos para la inclusión social Pedagogía Social Revista Interuniversitaria, 35 (2020), pp. 125-138, 10.7179/PSRI_2020.35.10 View at publisher Google Scholar

  30. Park et al., 2003 J. Park, J. Marquis, L. Huffman, A. Turnbull, D. Poston, H. Mannan, …, L. Nelson Toward assessing the family quality of life as the service outcome Journal of Intellectual Disability Research, 47 (2003), pp. 367-384, 10.1046/j.1365-2788.2003.00497.x View at publisher View in ScopusGoogle Scholar

  31. Peralta and Arellano, 2010 F. Peralta, A. Arellano Familia y discapacidad. Una perspectiva teórico-aplicada del enfoque centrado en la familia para promover la autodeterminación Electronic Journal of Research in Educational Psychology, 8 (3) (2010), pp. 1339-1362 〈〉 View in ScopusGoogle Scholar

  32. Poston et al., 2003 D. Poston, A. Turnbull, J. Park, H. Mannan, J. Marquis, M. Wang Family quality of life: A qualitative inquiry Mental Retardation, 41 (5) (2003), pp. 313-328, 10.1352/0047-6765(2003)41<313:FQOLAQ>2.0.CO;2 View at publisher Google Scholar

  33. Shepherd et al., 2021 D. Shepherd, J. Landon, S. Goedeke, J. Meads Stress and distress in New Zealand parents caring for a child with autism spectrum disorder Research in Developmental Disabilities, 111 (2021), Article 103875, 10.1016/j.ridd.2021.103875 View PDFView articleView in ScopusGoogle Scholar

  34. Summers et al., 2007 A. Summers, J. Marquis, H. Mannan, A. Turnbull, K. Fleming, D. Poston, …, K. Kupzykd Relationship of perceived adequacy of services, family–professional partnerships, and family quality of life in early childhood service programmes International Journal of Disability, Development and Education, 54 (2007), pp. 319-338, 10.1080/10349120701488848 View at publisher View in ScopusGoogle Scholar

  35. Turnbull, 2003 A.P. Turnbull La calidad de vida de la familia como resultado de los servicios: el nuevo paradigma Siglo Cero, 34 (3) (2003), pp. 59-73 〈〉 Google Scholar

  36. Turnbull et al., 2000 Turnbull, A. P., Turbiville, V., & Turnbull, H. R. (2000). Evolution of family-professional partnerships: Collective empowerment as the model for the early twenty-first century. In J. P. Shonkoff & S. J. Meisels, Handbook of early childhood intervention (2a ed.). Cambridge: Cambridge University Press. Google Scholar

  37. Vasilopoulou and Nisbet, 2016 E. Vasilopoulou, J. Nisbet The quality of life of parents of children with autism spectrum disorder: A systematic review Research in Autism Spectrum Disorders, 23 (2016), pp. 36-49, 10.1016/j.rasd.2015.11.008 View PDFView articleView in ScopusGoogle Scholar

  38. Vidriales et al., 2017 Vidriales, R., Hernández, C., Plaza, M., Gutiérrez, C., & Cuesta, J. L. (2017). Calidad de vida y Trastorno del Espectro del Autismo. Confederación Autismo España. Google Scholar

  39. Wang et al., 2020 H. Wang, X. Hu, Z.R. Han Parental stress, involvement, and family quality of life in mothers and fathers of children with autism spectrum disorder in mainland China: A dyadic analysis Research in Developmental Disabilities, 107 (2020), Article 103791, 10.1016/j.ridd.2020.103791 View PDFView articleView in ScopusGoogle Scholar

  40. Zeng et al., 2021 S. Zeng, H. Zhao, X. Hu, J.D. Lee, A.K. Stone-MacDonald, Z.W. Price Are we on the same page: A dyadic analysis of parental stress, support, and family quality of life on raising children with autism spectrum disorders Journal of Developmental and Physical Disabilities, 33 (2021), pp. 599-618, 10.1007/s10882-020-09761-x View at publisher View in ScopusGoogle Scholar

  41. Zuna et al., 2010 N.I. Zuna, J.A. Summers, A.P. Turnbull, X. Hu, S. Xu Theorizing about family quality of life R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities: From theory to practice, Springer (2010), pp. 241-278 View at publisher CrossRefGoogle Scholar

  42. Zuna et al., 2009 N.I. Zuna, A. Turnbull, J.A. Summers Family quality of life: Moving from measurement to application Journal of Policy and Practice in Intellectual Disabilities, 6 (1) (2009), pp. 25-31, 10.1111/j.1741-1130.2008.00199.x View at publisher View in ScopusGoogle Scholar

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