Background: Taking care of a child with autism is a difficult task, and requires special knowledge and special education. The experiences of families raising a child diagnosed with autism spectrum disorder are often neglected in the treatment plan. Objective: The purpose of this systematic review is to explore the experiences of families with a child with autism. Methods: A systematic review of the qualitative studies that have explored the experience of autism through the lived experience of families raising a child with autism has been implemented. Results and Discussion: The literature was acquired via the Medline, PubMed, PsycINFO databases. Seven major thematic units have emerged that crystallize the experience of families with a child on the autism spectrum. These are: a) emotional effects, fear and insecurity for the future, b) effects on family life, c) education, d) concerns of sanitary interest, e) help and support, f) adaptation. The present study highlights the lived experience of autism through the experiences of parents raising a child on the autism spectrum. One of the most important problems that the parents of these children have to deal with is stress, fear of the future, and psychological strain. Many times, these are intensified by the breakdown of the relationship between the parents as well as by the financial burden. All these burdens affect the harmonious functioning of the family and the health of the children as they mutually influence each other. These parents face many challenges, and their daily life is a long struggle of acceptance and adaptation. Conclusion: The need for psychosocial support and information interventions for these individuals is clearly seen through their words and experiences. Support, education, and information can equip parents with the knowledge, skills, and confidence to support their children.
Key words: Autism, Family, lived experience, qualitative research.
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