Parents Under Strain: Depression, Lost Work and the Support Families Go Without

Parents and carers of autistic children report depression, anxiety, broken sleep and lost income more often than other parents, in studies from Europe, the Americas, Asia and Australia. Where researchers look at what makes the difference, they keep finding things that can be changed: support, services, money, sleep, timely diagnosis and being understood.

Behind those findings is a very ordinary kind of exhaustion. It is the parent making the fifth phone call of the week to a service that does not call back. It is the mother who cut her hours, then left her job, because no after-school club could meet her child’s needs. It is the family that waited years for an assessment and found almost nothing on the other side. Often it is a parent who is autistic too, dealing with professionals who misread them. None of this is a story about autistic children or adults being a problem. Again and again in the research, what wears parents down is the fight for help, and the work they are left to do alone and unpaid that services should be sharing.

Three in ten parents have a depressive disorder, and a third an anxiety disorder

The clearest estimate of diagnosable conditions comes from a 2020 meta-analysis of 31 studies and 9,208 parents of autistic children: median pooled proportions of 31% for depressive disorders (95% CI 24–38%) and 33% for anxiety disorders (95% CI 20–48%), with wide variation between studies^[1]. A 2025 meta-analysis of a broader measure, depressive symptoms on screening questionnaires, found them in 45% (95% CI 39–51%) of 13,853 caregivers across 40 English-language studies^[3].

Studies with comparison groups find more stress than among other parents. A 2013 meta-analysis found a large difference in parenting stress between parents of autistic and non-autistic children, and a large difference against parents of children with other disabilities, though the authors caution that the second result may reflect comparisons with Down syndrome in particular^[4]. A 2018 meta-analysis of 133 studies found stress higher among parents of children with autism or developmental delay than in other clinical groups. Stress was linked to what the studies record as child behaviour problems, which the authors read not as a verdict on children but as a reason to assess parenting stress in routine care and identify support “for both the parent(s) and child”^[5].

National records agree. In South Korea, linked disability-registry and health-insurance data for 2004–2020 showed that the incidence of depression among mothers of autistic children was 2.6 times that among mothers of non-autistic children (a descriptive comparison), and higher when children were younger; in interviews, mothers of autistic adults described keeping their struggles to themselves^[6]. In the Netherlands, 181 parents of young autistic children reported mental health problems at about twice the population norm (41–46%, against 20%)^[7]. A 2026 meta-analysis of 216 studies found caregivers’ quality of life markedly lower than comparison groups’, and better in countries with a higher Human Development Index^[8].

In England, a survey of 750 parents caring for a disabled or chronically ill child (not autism alone) found that 42% had experienced suicidal thoughts or behaviours while caring, and only half had sought help. Depression, feeling trapped, difficulty coping and a mental health diagnosis from before they became carers were the main risk factors, and the authors call for parent carers to be a priority group for suicide prevention^[9]. Thoughts like these reflect how much someone is carrying, and they can ease with support. If this feels familiar, you do not have to wait until things get worse to reach out.

Nights are shorter and more broken, and physical health is less studied

In a small US study of 57 parents using sleep diaries and wrist-worn monitors, parents of autistic children reported poorer sleep quality than parents of non-autistic children, and woke earlier and slept less^[10]. In Brazil, 44% of 595 mothers of autistic children reported poor sleep quality and 70.4% did not get seven to nine hours a night. That study had no comparison group, but mothers dissatisfied with their child’s therapy had about twice the odds of poor sleep quality (odds ratio 1.99)^[11].

In US national surveys from 2016–2019 covering 2,111 mothers and 818 fathers of autistic children, mothers whose children had more sleep problems, and fathers with more parenting stress, had higher odds of poor physical health. Mothers in two-parent households with incomes above 400% of the federal poverty line had lower odds of poor mental health, and the authors call for “expanding existing services and coverages of ASD services, especially for low-income families”^[12]. Sleep difficulties are among the most common health needs autistic children have (see our article on sleep and autism), so supporting children’s sleep may help parents too.

Evidence on parents’ physical health is thinner and more mixed. In the US National Health Interview Survey (2016–2018), caregivers of autistic children were more likely than caregivers of children with neither autism nor ADHD to report two of ten common physical conditions; for caregivers of children with ADHD it was nine^[13].

Mothers lose the most work and income, and less where the state steps in

In the US Medical Expenditure Panel Survey (2002–2008), mothers of autistic children earned 56% ($14,755) a year less than mothers of children with no health limitation and 35% ($7,189) less than mothers of children with another health limitation. They were 6% less likely to be employed and worked seven fewer hours a week than mothers of children with no health limitation. Fathers’ outcomes did not differ significantly^[14].

The size of the gap depends on where a family lives. Comparing 2019 US survey data with Norway’s national registers, a 2024 study found that 50% of US mothers of autistic children whose condition parents rated moderate or severe were in paid work, against 76% of mothers of children without special health care needs. In Norway, for autistic children on the higher levels of a state assistance allowance, the figures were 61% and 80%. After adjustment the gaps were 25 and 13 percentage points. The authors credit Norway’s high female employment and “an elaborated welfare state and policy package”^[2].

In the Longitudinal Study of Australian Children (2004–2015), mothers of school-age autistic children had up to twice the odds of other mothers of being out of the labour force, after adjustment^[15]. Even in Sweden, mothers of autistic children in Stockholm in 2006 had twice the odds of other mothers of sick leave lasting more than a year (odds ratio 2.0; fathers 1.4) and 1.6 times the odds of being outside the labour force, after adjusting for factors including education, household type, social assistance and earlier psychiatric care. The authors conclude that “there exist unmet needs among these parents”^[16].

In a national online survey in China covering 5,018 autistic children, 37.3% of mothers were in paid work, against 96.7% of fathers, and 54.3% of mothers had resigned to care, against 2.8% of fathers^[17]. Childcare is often the breaking point. In a US national survey, 39% of families of autistic preschoolers said childcare problems had greatly affected their employment decisions, against 9% of families of typically developing children; after adjustment, their odds of saying so were about seven times those of other families^[18]. In urban China the figures were 58% and 9%^[19]. In Kazakhstan’s Karaganda region, 91% of 239 families surveyed in 2023 reported financial difficulties linked to their child’s care, and the authors call for “continued development of government support”^[20].

Many parents are autistic too, and services often misread them

Autism is strongly heritable. A Swedish study of children born 1982–2006 estimated heritability at 83%, suggesting that genetic factors may account for most of the variation in who is autistic^[21]. Many parents share autistic traits or are autistic themselves: in a US study of 355 parents of recently diagnosed young children, 33.2% scored above a screening cut-off for elevated autistic traits (a screen, not a diagnosis)^[22]. Some are diagnosed only after their child. In a small Spanish study of nine autistic mothers, their own diagnoses had followed their child’s or a close relative’s^[23]; our article on diagnosis in adulthood looks at that pathway.

A 2020 online survey compared 355 autistic mothers with 132 non-autistic mothers, all with at least one autistic child and mostly living in the UK, US, Australia, France and Canada. Autistic mothers were more likely to feel misunderstood by professionals and to find motherhood isolating (69% against 58%). Only 37% said they were not afraid of others judging their parenting, against 64%. The authors found autistic mothers put their children’s needs first, and concluded they “would benefit from additional and better-tailored support”^[24].

A 2026 synthesis of 12 qualitative studies found autistic parents describing being “judged, dismissed, and misinterpreted as parents”, carrying “the emotional and practical labor of accessing support”, and meeting “service misfit”. They also described what works: respect, clarity and autism-informed adaptation. Its summary: “systems need to change, not autistic parents”^[25].

What helps: support, breaks and help that comes in time

When researchers ask what drives parents’ stress, much of the answer is about the world around the family. A review of 98 studies concluded that the most concerning findings were that “parents struggle accessing a diagnosis and services for their child and are frustrated with health care providers’ knowledge of ASD and lack of communication”^[26]. A 2022 meta-analysis of 28 studies (13,270 parents) linked more social support to lower parenting stress and, through it, better quality of life^[27].

Breaks matter. In a US study of 101 couples, each extra hour a week of respite care was associated with a half-standard-deviation improvement in marital quality^[28]. The wider evidence is mixed. A review of 11 studies found most linked respite to lower stress but several to higher stress, and urged caution^[29]; a 2026 meta-analysis of five studies found that programmes including respite were linked to better quality of life for caregivers (standardised mean difference 0.45), comparable to parent training, though every study had a high risk of bias^[30]. Among UK unpaid carers generally, 65% said being unable to take a break was a reason they felt overwhelmed^[31] (see our study of unpaid carers’ health).

Support from peers can help too. In a US randomised trial, trained and supervised peer mentors led six weekly group sessions for 243 mothers of children with disabilities (65% autistic), 48% of whom were clinically depressed at the start. Both programmes tested led to significant reductions in stress, depression and anxiety, and better sleep^[32]. Neither arm was an unsupported control.

Timely diagnosis, and what follows it, matter as well. In a UK survey of 1,047 parents, confirming a diagnosis took around 3.5 years from first approaching a professional; just over half were dissatisfied with the process, and post-diagnostic support for parents, where there was any, was judged unsatisfactory^[33]. For how long families wait today, see our international look at assessment waits.

What the evidence asks of us

The research does not ask parents to cope better. It asks services to share the load, and guidance already points that way. NICE in England recommends telling all families and carers about their right to short breaks and to a formal carer’s assessment of their own physical and mental health needs, assessing families’ own needs, and considering regular short breaks when a child’s sleep problems keep affecting the family^[34]. The World Health Organization says that once autism is diagnosed, autistic people and their carers should be offered “relevant information, services, referrals, and practical support”^[35]. In practice, the evidence points to:

• Asking about parents’ health as routine. Assess parents’ stress and mental health as part of the child’s care^[5][34], and treat parent carers as a priority group in suicide prevention^[9].
• Funding short breaks as health care, at the scale families need. They are in national guidance^[34] and linked to lower stress and better quality of life^[28][30].
• Closing the gap between concern, diagnosis and support. Parents name delays and poorly informed services among their biggest stressors^[26][33].
• Making work compatible with care. Mothers’ employment gaps are smaller where the welfare state helps families combine the two^[2], and childcare is a common breaking point^[18][19].
• Treating children’s co-occurring health needs, such as sleep problems, which are linked to mothers’ own health^[12].
• Designing services with autistic parents, who ask for respect, clear communication and autism-informed adjustments^[24][25].

Language: this piece uses identity-first language (“autistic people”), the preference of most autistic-led organisations, and uses clinical terms such as “autism spectrum disorder” only when naming a study or diagnostic category.

Why we're publishing this

Health Insurance UK is a commercial health-insurance resource, not a charity and not a campaign. We compiled this evidence because research on families is too often told as a story about how hard autistic children are to raise. The data tell a different story: parents are carrying too much without enough help, and many of them are autistic too. Autistic people, their families and the organisations standing with them deserve these numbers clean, sourced and in one place. The case is theirs; our part is to say plainly what the research shows. More evidence summaries are in our Autism & Health research library.

How to read this data

Most figures come from cross-sectional surveys and registry studies, which show associations, not causes. “Depressive disorder” figures come from diagnostic interviews or records; “depressive symptoms” come from screening questionnaires. Odds ratios are reported as odds; the US–Norway figures are percentage-point differences in the probability of being employed; the Korean figure is a descriptive comparison, not an adjusted risk. “Mild”, “moderate or severe” and “typically developing” are the studies’ own labels for their groups. Several studies are small, lack a comparison group or use self-selected online samples. The English suicide study and the Carers UK survey cover parent carers and unpaid carers generally, not autism alone. Findings from different countries and years are not directly comparable. Most research is on mothers of autistic children in high-income countries and China; far less is known about fathers, carers of autistic adults, or families in lower-income countries.

Use this data

Free to cite with attribution to Health Insurance UK. Charities, campaigners and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Important: This article summarises published research for general information. It is not medical advice and cannot be used to diagnose, treat or predict anything about an individual. If you have concerns about your own or someone else's health, please speak to a qualified health professional.

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