Many mothers caring for autistic children say they have lost their sense of identity while devoting themselves to their children’s needs, according to new research. A study from Manchester Metropolitan University found that mothers often feel unable to seek help for their own well-being, even when they are struggling with significant stress and exhaustion.
The research, published in the Psychreg Journal of Psychology, involved in-depth interviews with eight mothers of autistic children living in England and the Isle of Man. Their children ranged in age from 5–18, with autism diagnoses received between the ages of two and a half and 17.
Researchers used a psychological framework known as the COM-B model, which identifies capability, opportunity, and motivation as key factors influencing behaviour. The approach was used to explore why many mothers struggle to seek support despite growing awareness of the pressures associated with caring for autistic children.
The findings revealed that a lack of time was one of the biggest obstacles. Mothers described how caring responsibilities left little room for anything else, meaning their own well-being was consistently pushed to the bottom of the list. Even quiet moments away from their children were often taken up by housework or other responsibilities.
Many participants also described feeling overwhelmed by the sheer volume of information available following a diagnosis. Some said they felt lost trying to determine what support they actually needed, while fear and hopelessness about the future were common, particularly in the period immediately after diagnosis.
Judgement from others emerged as another significant barrier. Several mothers described feeling blamed for their children’s difficulties, both by professionals and other parents, leading to deep feelings of guilt and self-doubt. This sense of stigma often made mothers reluctant to acknowledge that they were struggling at all.
Despite these challenges, the study also highlighted factors that helped mothers cope. Connecting with other parents in similar situations was described as hugely comforting, helping mothers feel less alone. Where available, support from family members also gave some mothers a valuable opportunity to rest and recover.
The researchers argue that support should be offered automatically at the point of diagnosis, rather than expecting exhausted mothers to seek it out themselves. They suggest that reducing stigma within healthcare services, alongside improving access to peer support, could make a meaningful difference to maternal mental health.
With autism diagnoses having risen sharply in the UK over the past two decades, the study’s authors say the well-being of parents, particularly mothers, must not be overlooked. They call for a shift in how support systems are designed, with services taking greater responsibility for reaching out proactively rather than leaving mothers to cope alone.
