A quarterly publication of the Autism Research Institute

The Autism Research Review International is quarterly publication of the Autism Research Institute

Summer, 2019 | Number 3, Volume 33

Needs, experiences of siblings of adults with ASD explored

While a number of studies have explored the experiences and needs of parents of adult children with autism spectrum disorders(ASD), a new study by Philippa Moss and colleagues focused instead on siblings. In the study, the researchers asked 37 female and 19 male siblings, averaging 40 years of age, about their experiences growing up with a sibling with autism and their concerns for the future. 

More than three-quarters of the participants described benefits related to having a sibling with ASD. Participants frequently mentioned the sibling’s positive characteristics and the beneficial impacts on their own lives or personalities—saying, for example, that growing up with a sibling with ASD made them more tolerant or caring. Only 14% of participants did not cite any benefits to the relationship. 

The main problems mentioned by participants were the sibling’s behavior problems and the disruption to the family’s relationships or social life. The researchers detected no association between the level of negative comments about the relationship and participants’ social functioning or mental health. 

Two of the biggest concerns expressed by the participants were the need to find appropriate care for siblings with ASD and the potential emotional effect on the siblings when their parents died. The researchers commented, “Most participants described a mix of positive and negative experiences, but current concerns focused predominantly on future long-term care. Many adult siblings will become increasingly responsible for ensuring the welfare of the individual with autism. Medical and other services need to recognize the importance of this role and the need actively to involve siblings in care planning and decision-making.”


“Growing older with autism—the experiences of adult siblings of individuals with autism,” Philippa Moss, Vasiliki Eirinaki, Sarah Savage, and Patricia Howlin, Research in Autism Spectrum Disorders, Vol. 63, July 2019, 42-51. Address: Philippa Moss,[email protected]