Document Type : Original Article


1 Social Determinants of Health Research Center, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran, Department of Health Services Management, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

2 Department of Health Services Management, School of Health, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

3 Department of Rehabilitation Management, Rehabilitation Faculty, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

4 Department of Health Services Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran


BACKGROUND: Conditions and needs of autistic children have impacts on both the children and the
family members who have crucial roles in raising the child. The prevalence of autism is increasing,
and this fact makes it necessary to focus more on experiences of parents who have children with
autism spectrum disorder (ASD). Hence, this study aimed to reflect the experiences of parents who
have autistic children.
MATERIALS AND METHODS: The present study was a qualitative research with phenomenology
approach which was conducted using content analysis approach. Participants were 14 parents with
ASD children in Ahvaz, and they were included based on purposive sampling method. To gather the
required data, semi‑structured interviews were formed. Data analysis was performed by Colaizzi’s
seven‑step method.
RESULTS: Fifty‑four conceptual codes were extracted from interviews of ASD children parents.
Parents of these children had two main experiences: first family related and second education and
treatment problems. Family problems included three categories (financial, psychological, and family
relationships). Education and treatment was categorized into three (schooling, transporting, and
quality in facilities).
CONCLUSIONS: Problems mentioned by parents of autistic children highlight the need for providing
training and counseling services as well as emotional supports from both society and government.
Planning and implementing supportive plans empower parents to strategically face problems and
eventually improve their life quality and mutual understanding.


  1. Volkmar FR. Autism and Pervasive Developmental Disorders.
    2nd ed. Cambridge: Cambridge University Press; 2007.
  2. 2. Baio J. Prevalence of autism spectrum disorders: Autism and
    developmental disabilities monitoring network, 14 sites, United
    States, 2008. Morbidity and mortality weekly report. Surveillance
    summaries. Centers Dis Control Prevent 2012;61:1‑19.
    3. Sevlever M, Gillis JM. An examination of the state of imitation
    research in children with autism: Issues of definition and
    methodology. Res Dev Disabil 2010;31:976‑84.
    4. Steiner AM, Goldsmith TR, Snow AV, Chawarska K. Practitioner’s
    guide to assessment of autism spectrum disorders in infants and
    toddlers. J Autism Dev Disord 2012;42:1183‑96.
    5. Järvinen‑Pasley A, Heaton P. Evidence for reduced
    domain‑specificity in auditory processing in autism. Dev Sci
    6. Ronemus M, Iossifov I, Levy D, Wigler M. The role of de novo
    mutations in the genetics of autism spectrum disorders. Nature
    Rev Gene; 2014;15:133‑40.
    7. Heidari S, Sajjadian I, Heidarian A. The effectiveness of acceptance
    and commitment Group rherapy on psychological distress and
    negative automatic thoughts in mothers of children with autism
    spectrum disorder. J Fund Ment Health 2016;18:491‑9.
    8. Zhang R, Zhang HF, Han JS, Han SP. Genes related to oxytocin
    and arginine‑vasopressin pathways: Associations with autism
    spectrum disorders. Neurosci Bull 2017;33:238‑46.
    9. Samadi SA, Mahmoodizadeh A, McConkey R. A national study
    of the prevalence of autism among five‑yearold children in Iran.
    Autism 2012;16:5‑14.
    10. ChristensenDL. Prevalence and characteristics of autism spectrum
    disorder among children aged 8 years‑autism and developmental
    disabilities monitoring network, 11 sites, United States, 2012.
    MMWR Surveillance Summaries 2016;65:1‑23.
    11. Amiet C, Gourfinkel‑An I, Bouzamondo A, Tordjman S, Baulac M,
    Lechat P, et al. Epilepsy in autism is associated with intellectual
    disability and gender: Evidence from a meta‑analysis. Biol
    Psychiatry 2008;64:577‑82.
    12. AaghariNekah SM, Afrooz GA, Bazargan A, Shokohi M.
    Probe in play of autistic children through of mothers’ lived
    experiences: A case of a mixed method research. Rev Psicol Educ
    13. Meirsschaut M, Roeyers H, Warreyn P. Parenting in families with
    a child with autism spectrum disorder and a typically developing
    child: Mothers’ experiences and cognitions. RASD 2011;4:661‑9.
    14. Johnson E, Hastings RP. Facilitating factors and barriers to
    the mplementation of intensive home‑based behavioural
    intervention for young children with autism. Child Care Health
    Dev 2002;28:123‑9.
    15. Chimeh N, Pouretemad HR, Khoramabadi R. Need assessment
    of mothers with autistic children. J Fam Res 2007;3:697‑707.
    16. McGill P, Papachristoforou E, Cooper V. Support for family carers
    of children and young people with developmental disabilities and
    challenging behaviour. Child Care Health Dev 2006;32:159‑65.
    17. Jones L, Hastings RP, Totsika V, Keane L, Rhule N. Child bihavior
    problems and parental well‑being in families of children with
    autism: The mediating role of mindfulness and acceptance. AJIDD
    18. Weiss JA, Cappadocia MC, MacMullin JA, Viecili M, Lunsky Y.
    The impact of child problem behaviors of children with ASD
    on parent mental health: The mediating role of acceptance and
    empowerment. Autism 2012;16:261‑74.
    19. Rivard M, Terroux A, Boursier CP, Mercier M. Determinants of
    Stress in parents of children with autism spectrum disorders.
    J Autism Dev Disord 2014;44:1609‑20.
    20. Bayrami M, Hassimi Nosratabad T, Besharat R, Movahedi Y,
    Kohpayma S. The study of the components of neuroticism among
    parents of autistic children, mental retarded and normal in the
    city of Tabriz. Excep Educ 2014;9:17‑27.
    21. Bashir A, Bashir U, Lone A, Ahmad Z. Challenges faced by
    families of autistic children. IJIRI 2014;2:64‑8.
    22. Dababnah S, Parish LS. At a moment, you could collapse: Raising
    children with autism in the West Bank. Child Youth Serv Rev
    23. Morrow R, Rodriguez A, King N. Colaizzi’s descriptive
    phenomenological method. Psychologist 2015;28:643‑4.
    24. Guba EG, Lincoln YS. Competing paradigms in qualitative
    research. In: Handbook of Qualitative Research. London CA:
    Sage; 1994.
    25. Kheir MN, Ghoneim MO, Sandridge LA, Hyder AS, Ismail M,
    AL‑Rawi F. Concerns and considerations among caregivers of a
    child with autism in Qatar. BMC Res Notes 2012;5:290.
    26. Sharpe DL, Baker DL. Financial Issues Associated with Having
    a Child with Autism. J Fam Econ Issues 2007;28:247‑64.
    27. Koohkan E, Yousofian S, Rajabi G, Zare‑Farashbandi F. Health
    information needs of families at childhood cancer: A qualitative
    study. J Educ Health Promot 2019;8:246.
    28. Poretemad HR, Khoushabi K, Afshari R, Moradi S. Coping
    strategies and mental health in autistic children mothers. J Fam
    Res 2006;2:285‑92.
    29. Mazurek MO, Handen BL, Wodka EL, Nowinski L, Butter E,
    Engelhardt CR. Age at first autism spectrum disorder diagnosis:
    The role of birth cohort, demographic factors, and clinical features.
    J Dev Behav Pediatr 2014;35:561‑9.
    30. Dadipoor S, Haghighi H, Madani A, Ghanbarnejad A, Shojaei F,
    Hesam A, et al. Investigating the mental health and coping
    strategies of parents with major thalassemic children in Bandar
    Abbas. J Edu Health Promot 2015;4:59.
    31. Freedman B, Kalb LG, Zaboltsky B, Stuart EA. Relationship status
    among parents of children with autism spectrum disorders:
    A population‑based study. Autism Dev Disord 2012;42:539‑48.
    32. Hartley SL, Barker ET, Seltzer MM, Floyd F, Greenberg J,
    Orsmond G, et al. The relative risk and timing of divorce in
    families of children with an autism spectrum disorder. J Fam
    Psychol 2010;24:449‑57.
    33. Hoppe SE. Parent perceptions: Communication, interaction, and
    behavior in autism. teaching. Excep Children Plus 2005;1:14‑25.
    34. Balance A, Riley RA, Goldsmith RT. Autism Spectrum Disorders:
    A Lifespan Perspective. USA: Western Michigan University; 2008.
    35. AhmadiA, SharifiE, Azizi‑Zalani H, Bolouk S, Amrai K. The needs
    of Iranian families of children with autism spectrum disorder,
    cross‑cultural study. Procedia Soc Behav Sci 2011;15:321‑6.