The mental health of parents who provide care: what the data show

The four systems this series has examined — healthcare, education, protection against bullying and dependency support — have something in common: when they fail, the need does not disappear. Someone absorbs it — and, statistically, that person is usually a woman.

First: who does the caring

According to a 2023 survey by Plena inclusión, 83% of those who care for people with intellectual and developmental disabilities within families are women: 68% mothers, 12% sisters and 3% sisters-in-law. The survey covers intellectual and developmental disabilities in general — a group that includes, but is not limited to, autism — and its result matches what the Observatorio Estatal de la Discapacidad [State Disability Observatory] summarises: many carers, most of them women, have had to reduce or give up their paid work to provide care.

Caring hours increase when services, respite or flexible working arrangements are unavailable. To understand the pressure on a family, it helps to ask who performs each task, how much paid work they have reduced, how much sleep they get and what regular help they can use.

What the research says about their mental health

International research has spent two decades measuring what families know from experience. Studies describe higher levels of stress, depression and anxiety among parents of autistic children than among parents of non-autistic children and, in many studies, than among parents of children with other developmental conditions. A recent global review estimated the pooled prevalence of depressive symptoms among carers of autistic children at around 45%.

A study published online in August 2022 followed this over time: for 18 months it tracked 86 mother-and-child pairs, around half of them with an autistic child. Around half of the mothers of autistic children had elevated depressive symptoms during the 18-month study, compared with 6% to 13.6% of mothers of non-autistic children. Symptoms were measured by maternal self-report, and children's behavioural difficulties — mainly externalising behaviours such as tantrums, aggression or defiance — were also reported by the mothers.

The questionnaires measured symptoms; they did not establish a diagnosis for every mother. Even so, the frequency and persistence observed suggest that services should ask about carers' mental health and facilitate an assessment when symptoms are present.

A finding that challenges maternal self-blame

The same study left another result that deserves to be read twice. Children's behavioural difficulties predicted later maternal depressive symptoms, but maternal depressive symptoms did not predict a later increase in the behavioural difficulties measured — even in the families under the greatest strain. The authors themselves explain why this matters: mothers carry a great deal of guilt, self-blame and stigma around their child's diagnosis, and this result may help challenge that self-blame — experiencing depressive symptoms did not mean that they were causing their child's difficulties.

The result does not blame the child or demonstrate a single cause of depression. It does challenge the idea that maternal symptoms subsequently explained the increase in the behaviours measured.

When public support does not meet the need

Gaps in services transfer work and costs to families. In 2020, the Spanish Ombudsman reported that Spain had around 6 clinical psychologists per 100,000 inhabitants, compared with a European average of 18, based on 2018 data. In 2026, the average processing time in Spain's dependency-support system was 341 days and the average family-care allowance — awarded to the person with recognised dependency — was €261.55 per month.

These figures come from different systems and cannot, on their own, calculate the effect on an individual carer's health. They do help explain why many families provide, for months or years, the time, money and care that services do not supply.

Support that carers can request

Spain's special Social Security agreement for non-professional carers may be requested by a person formally named as the carer in the dependency resolution and Individual Care Plan, provided the eligibility conditions are met. The state pays the standard contributions, allowing the carer to continue building pension entitlement during the period of care. Some autism and disability organisations offer respite, flexible family support or short breaks, although availability varies by organisation and area. Peer-support groups can also provide practical information and contact with other families.

If somebody has spent weeks sleeping badly, crying frequently, losing interest in usual activities or finding it difficult to function, they should seek an appointment in primary care or mental health services. These changes may reflect depression, anxiety, exhaustion or another problem and need assessment. Care should address the person's own health as well as the lack of respite, flexible working or practical help at home.