Impact on Family of Autism

Mother and adult son with autism

Some people say that having an autistic family member is the best thing that has happened to the family.

"I feel privileged that my son is autistic because it has opened up a whole new world and made me look at everything so differently" (Parent , Myers et al 2009).

However some people say that they face a range of difficulties because a family member is autistic.

For example, many of them become worried and exhausted looking after someone with autism. And they face the frustration of trying to find accurate information about interventions which work. Or of trying to cope with the lack of adequate services.

In some cases these difficulties can lead to family breakdown. In others it can lead to the family becoming more resilient and more united.

Personal Accounts

“He is a blessing! A gift from God! Helps everyone in our home spiritually” (Parent , Myers et al 2009)

“He keeps me going, there is never a dull moment, I couldn't see my life without him. He makes you laugh, cry, feel happy, and everyday is a new accomplishment” (Parent , Myers et al 2009)

“My son has so enriched my life that it is unbelievable. I have learned so much about living life fully, about God and the nature of man, about love. It hasn't been easy all the time, but I would not trade the experience for anything. I think regular kids are boring. You don't have to try to read their minds, expressions or mannerisms. I love him better than life itself” (Parent , Myers et al 2009)

"You have to constantly explain what's wrong with him. People don't understand, they don't live with it 24 hours a day and get the constraints that come with him – I can't take him to Asda, can't take him on holiday because he can't stand the cabin pressure. It governs absolutely everything, where you go, what you eat, it's your whole life, even down to whether the patterns on the wallpaper are going to upset him. I can't do the simplest things that other people take for granted." (Parent of seven-year-old boy with autism, Simmons, 2008)

"We've had major disruption to family life for 16 years. Injuries to family members, especially parents. Parents' social life destroyed for 16 years. Severe limitations on where to go for holidays and what to do. Major reduction in family income (halved) due to one parent having to be at home all the time." (Parent, Barnard J. et al, 2011)

"Our marriage suffered and is still not right. I can understand why so many parents of autistic children are divorced." (Parent, Barnard J. et al, 2011)

Research

This page provides details of some of the most significant scientific studies and reviews on the impact of autism on the family which have been published in English-language, peer-reviewed journals. If you know of any other studies we should include please email info@researchautism.net with the details. Thank you.

If you know of any other publications we should list on this page please email info@informationautism.org

Please note that we are unable to supply publications unless we are listed as the publisher. However, if you are a UK resident you may be able to obtain them from your local public library, your college library or direct from the publisher.

Related Research

Bonis S. (2016) Stress and parents of children with autism: A review of literature. Issues in Mental Health Nursing. 37(3), Read Abstract (New Window)
Corcoran J., Berry A., Hill S. (2015) The lived experience of US parents of children with autism spectrum disorders A systematic review and meta-synthesis. Journal of Intellectual Disabilities. 18(4), Read Abstract (New Window)
Davis N. O., Carter A. S. (2008) Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. 38(7), Read Abstract (New Window)
DePape A., Lindsay S. (2015) Parents experiences of caring for a child with autism spectrum disorder. Qualitative Health Research. 25(4), Read Abstract (New Window)
Hastings R. P. (2002) Parental stress and behaviour problems of children with developmental disability. Journal of Intellectual and Developmental Disability. 27(3), Read Abstract (New Window)
Hastings R. P., Lloyd T. (2007) Expressed emotion in families of children and adults with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews. 13(4), Read Abstract (New Window)
Hayes S. A., Watson S. (2013) The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders. 43(3), Read Abstract (New Window)
Hillman J. (2007) Grandparents of children with autism: A review with recommendations for education, practice, and policy. Educational Gerontology. 33(6), Read Abstract (New Window)
Iarocci G., Gardiner E. (2012) Unhappy (and happy) in their own way: a developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism. Research in Developmental Disabilities. 33(6), Read Abstract (New Window)
Meadan H., Ebata A. (2010) Families with children who have autism spectrum disorders: Stress and support. Exceptional Children. 77(1), Read Abstract (New Window)
Myers B. J., Mackintosh V. H., Goin-Kochel R. P. (2009) 'My greatest joy and my greatest heart ache': Parents' own words on how having a child in the autism spectrum has affected their lives and their families' lives. Research in Autism Spectrum Disorders. 3(3), Read Abstract (New Window)
Ooi K. L. et al. (2016) A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment. 12 Read Abstract (New Window) Read Full (New Window)
Orsmond G. I., Seltzer M. M. (2007) Siblings of individuals with autism spectrum disorders across the life course. Mental Retardation and Developmental Disabilities Research Reviews. 13(4), Read Abstract (New Window)
Osborne L. A., McHugh L., Reed P. (2008) Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders. 38(6), Read Abstract (New Window)
Schuntermann P. (2007) The sibling experience: growing up with a child who has pervasive developmental disorder or mental retardation. Harvard Review of Psychiatry. 15(3), Read Abstract (New Window)
Sim A. et al. (2016) Relationship satisfaction in couples raising a child with autism spectrum disorder: A systematic review of the literature. Research in Autism Spectrum Disorders. 31 Read Abstract (New Window)
Trudgeon C., Carr D. (2007) The impacts of home-based early behavioural intervention programmes on families of children with autism. Journal of Applied Research in Intellectual Disabilities. 20(4), Read Abstract (New Window)
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 Read Abstract (New Window)

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