# Looking after yourself: stress, burnout, respite and short breaks

> Looking after yourself as the parent of an autistic child means getting regular breaks, rest and support before you run on empty, not as a reward for coping. Many parents of autistic children carry high levels of stress, and that is not a sign of failure. In England, you can ask your council for a free parent carer needs assessment, and councils must provide a range of short breaks.

- Canonical page: https://rocksmakepebbles.co.uk/guides/looking-after-yourself
- Publisher: Rocks Make Pebbles (https://rocksmakepebbles.co.uk)
- Topic: Family, money and support
- Applies to: UK
- Last updated: 28 September 2026. Checked against sources: 28 September 2026
- Professional review: Not yet reviewed (waiting for review by a clinical psychologist and parent of an autistic child)
- Drafted with the help of AI tools and checked against the sources listed below. Editorial policy: https://rocksmakepebbles.co.uk/editorial-policy

## Key points

- Parents of autistic children report more stress than other parents on average. That reflects the load you carry, not a failing.
- In a study of 101 couples, each extra hour of respite care a week was linked with better marriage quality.
- In England, you can ask your council for a free parent carer needs assessment of your own needs.
- Councils in England must provide a range of short breaks and publish who can get them.
- Many parents want support from others who understand. Several UK charities offer free peer support.
- If you are struggling, call Samaritans free on 116 123 at any time, or text SHOUT to 85258. In an emergency, call 999.

## Is it normal to feel this exhausted?

Yes. Many parents of autistic children feel worn down, and research backs that up. It reflects how much you are carrying, not a failing on your part.

- A 2013 review of studies with comparison groups found parents of autistic children reported more parenting stress than parents of typically developing children, and the difference was large ([Hayes and Watson 2013](https://pubmed.ncbi.nlm.nih.gov/22790429/)).
- A 2020 review pooled 31 studies of 9,208 parents of autistic children. It estimated that about 31% had a depressive disorder and about 33% an anxiety disorder, though results varied a lot between studies ([Schnabel et al. 2020](https://pubmed.ncbi.nlm.nih.gov/31070044/)).
- The system adds to the strain. In a UK survey of 1,047 parents, it took about 3.5 years on average from first approaching a professional to a diagnosis, and support after diagnosis was rated unsatisfactory ([Crane et al. 2016](https://pubmed.ncbi.nlm.nih.gov/25810370/)).

Stress is not the whole picture. In a population study of 18,415 children aged 5 to 16, which included 98 autistic children, mothers of autistic children were more likely to have an emotional disorder, but "positive maternal mental health was not affected" ([Totsika et al. 2011](https://pubmed.ncbi.nlm.nih.gov/20649912/)). Researchers also describe families finding real positives, which may help them cope ([Hastings and Taunt 2002](https://pubmed.ncbi.nlm.nih.gov/11853529/)). Hard days and real joy can sit side by side.

## What are the signs you are running on empty?

There is no agreed medical checklist for parent or carer burnout, so treat this as a rough guide, not a test. Carers UK says "It's all too easy to become exhausted and burnt out with everything you're juggling" ([Carers UK](https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/)).

It is time to ask for more support if:

- you are tired all the time, and rest no longer helps
- you dread each day, or feel trapped or hopeless
- you feel short-tempered or cut off, even from people you love
- you have stopped seeing friends or doing anything just for you
- you keep putting off your own health, such as your own GP appointments.

If you feel low or anxious most days, talk to your GP. In England, you can also refer yourself to NHS Talking Therapies, which offers free support for anxiety, depression or low mood ([Mental Health UK](https://mentalhealth-uk.org/help-and-information/stress/)).

Parent burnout is not the same as [autistic burnout](https://rocksmakepebbles.co.uk/glossary#autistic-burnout), which the NHS describes as some autistic children becoming "very exhausted from trying to cope with daily life" ([NHS](https://www.nhs.uk/conditions/autism/supporting-a-child/)). If you are autistic yourself, both may matter.

> **Get help now:** If you feel you cannot keep yourself or your child safe, or you are thinking about ending your life, call 999 or go to A&E. For urgent help that is not an emergency, call 111 and choose the mental health option ([NHS](https://www.nhs.uk/nhs-services/mental-health-services/where-to-get-urgent-help-for-mental-health/)). [Samaritans](https://rocksmakepebbles.co.uk/where-to-get-help#samaritans) are free on 116 123 at any time, or text SHOUT to 85258 to reach [Shout](https://rocksmakepebbles.co.uk/where-to-get-help#shout). In Northern Ireland, where there is no NHS 111, call your GP or the [GP out of hours service](https://www.nidirect.gov.uk/articles/gp-out-hours-service), or [Lifeline](https://rocksmakepebbles.co.uk/where-to-get-help#lifeline-ni) on 0808 808 8000 at any time.

## What actually helps parents cope?

What helps is mostly practical: regular breaks, support from other parents and sharing the load. These are not treats you have to earn.

### Breaks, even short ones

In a study of 101 mother and father couples raising at least one autistic child, each extra hour of respite care a week was linked with noticeably better marriage quality, through lower daily stress and more good moments ([Harper et al. 2013](https://pubmed.ncbi.nlm.nih.gov/23529841/)). The NHS says respite "helps stop you becoming exhausted and run down" ([NHS](https://www.nhs.uk/social-care-and-support/support-and-benefits-for-carers/carer-breaks-and-respite-care/)). An hour counts. Start with what you can get now, such as a grandparent for an afternoon or a swap with another parent, while you ask the council about [short breaks](https://rocksmakepebbles.co.uk/glossary#short-breaks).

### Sleep

If your child's nights are wearing you down, say so to your GP or paediatrician. [NICE guideline CG170](https://www.nice.org.uk/guidance/cg170/chapter/Recommendations) says that if a child's sleep problems keep affecting the family, professionals should consider referral to a sleep specialist and "short breaks and other respite care for one night or more", repeated regularly. If there are two of you, take turns on night duty so each of you gets some unbroken sleep. Our [sleep guide](https://rocksmakepebbles.co.uk/guides/sleep) covers what helps your child.

### Other parents who get it

In a 2026 survey of 225 parents of children with neurodevelopmental conditions, 77.3% wanted peer support, mostly because friends and family did not fully understand their situation. Parents valued "connection by recognition" and "experiencing no judgement" ([Verkooijen et al. 2026](https://pubmed.ncbi.nlm.nih.gov/41906793/)). Free options include:

- [Contact](https://rocksmakepebbles.co.uk/where-to-get-help#contact)'s Listening Ear: 45-minute phone appointments for emotional support with advisers who are all parents of disabled children ([Contact](https://contact.org.uk/help-for-families/listening-ear/))
- the [National Autistic Society](https://rocksmakepebbles.co.uk/where-to-get-help#nas)'s Parent to Parent service: trained parent volunteers who call you back (it aims to respond within 12 working days). It is emotional support, not advice ([National Autistic Society](https://www.autism.org.uk/advice-and-guidance/help-and-support/parent-to-parent-helpline))
- Autism Central in England, commissioned by the NHS: confidential peer coaching from trained peer guides with lived or family experience, and free online events ([Autism Central](https://www.autismcentral.nhs.uk/))
- your local parent carer forum, a group of parents who work with the council on local services ([NNPCF](https://nnpcf.org.uk/)).

### Sharing the load

Dads and partners can struggle quietly. In interviews with 17 fathers of autistic children in Singapore, themes included "holding it together" and "guarded disclosure", and the researchers urged services to invite fathers in rather than defaulting to mothers ([Ng et al. 2026](https://doi.org/10.1111/jan.70702)). Ask for appointments and letters to include both parents, and talk about how each of you is really doing.

Give family and friends specific jobs, such as the school run on Tuesdays, rather than "let me know if I can help". And write a short emergency plan: who would look after your child if you were suddenly ill, and what they need to know. A [one-page profile](https://rocksmakepebbles.co.uk/printables/one-page-profile) makes that easier. [NICE](https://www.nice.org.uk/guidance/cg170/chapter/Recommendations) lists emergency plans as part of the practical support families should be offered.

### One small thing for yourself

A 2025 review of 12 trials of mindfulness programmes for autistic children and their parents (643 people in all) found they reduced parents' stress, anxiety and low mood, but made no clear difference to children's behaviour problems ([Peng et al. 2025](https://pubmed.ncbi.nlm.nih.gov/40657585/)). If mindfulness is not for you, pick one small, regular thing that is just yours: a walk, a bath, a call with a friend.

## What support can I ask for in England?

In England, the law gives parent carers of disabled children specific rights, and you can ask for them yourself. You do not have to wait to be offered them, and [NICE](https://www.nice.org.uk/guidance/cg170/chapter/Recommendations) says families should be told about their right to short breaks and to an assessment of their own needs.

- **A [parent carer needs assessment](https://rocksmakepebbles.co.uk/glossary#parent-carer-needs-assessment).** Under [section 17ZD of the Children Act 1989](https://www.legislation.gov.uk/ukpga/1989/41/section/17ZD), your council must assess whether you need support if you ask, or if it appears you may. It must have regard to "the well-being of the parent carer", and give you a written record. You may also hear it called a carer's assessment, which the NHS says is free ([NHS](https://www.nhs.uk/social-care-and-support/support-and-benefits-for-carers/carer-assessments/)).
- **Short breaks.** Since 1 April 2011, councils must provide, "so far as is reasonably practicable", a range of short breaks, and publish a short breaks services statement setting out who can get them ([Breaks for Carers of Disabled Children Regulations 2011](https://www.legislation.gov.uk/uksi/2011/707/made)).
- **[Direct payments](https://rocksmakepebbles.co.uk/glossary#direct-payments).** If the council agrees your child needs a service, it can pay you the money instead, with your consent, so you can arrange the help yourself ([Children Act 1989, section 17A](https://www.legislation.gov.uk/ukpga/1989/41/section/17A)).

| Support | What it is | How to ask |
|---|---|---|
| Parent carer needs assessment | A look at your own needs, health and wishes | Write to the council's children with disabilities team |
| Short breaks | Day-time care, overnight care, activities, and help in evenings, weekends and school holidays | Read the council's short breaks statement, then ask |
| Direct payments | Money instead of a service your child is assessed as needing | Ask during or after the assessment |
| [Carer's Allowance](https://rocksmakepebbles.co.uk/glossary#carers-allowance) | £86.45 a week (2026/27) if you care 35 hours or more and meet the rules | Apply on [GOV.UK](https://www.gov.uk/carers-allowance) |
| Peer support | Other parents who understand | Contact, the National Autistic Society or Autism Central |

For Carer's Allowance, your child must get the middle or highest care rate of DLA, and you must earn £204 a week or less after tax, National Insurance and expenses ([GOV.UK](https://www.gov.uk/carers-allowance/eligibility)). Our [money guide](https://rocksmakepebbles.co.uk/guides/money-and-practical-help) covers other help.

> **Good to know:** You may not need to wait for a diagnosis. The disability charity Scope suggests asking the council for a needs assessment and a carer's assessment even before your child is diagnosed ([Scope](https://www.scope.org.uk/advice-and-support/find-support-services-before-child-diagnosed)).

## How do I ask for a parent carer needs assessment?

Put it in writing, and keep a copy. The NHS says parents of a child should contact the council's children with disabilities department ([NHS](https://www.nhs.uk/social-care-and-support/support-and-benefits-for-carers/carer-assessments/)).

1. Find your council's children with disabilities team on its website or [Local Offer](https://rocksmakepebbles.co.uk/glossary#local-offer).
2. Email to ask for "a parent carer's needs assessment under section 17ZD of the Children Act 1989".
3. Describe a normal day and night: the care you give, your sleep and health, your work and other children, and what would help.
4. Ask for the council's short breaks services statement and its eligibility criteria.
5. Ask about direct payments.
6. After the assessment, ask for your written record if you have not had one.
7. If you get stuck, call [Carers UK](https://rocksmakepebbles.co.uk/where-to-get-help#carers-uk) or Contact for advice.

> **Try this:** A short email is enough: "I am the parent carer of [name], who is autistic. I am asking for a parent carer's needs assessment under section 17ZD of the Children Act 1989. Please also send me your short breaks services statement and information about direct payments."

## Is it true most parents of autistic children split up?

No. The "80% divorce rate" has no good evidence behind it, although raising an autistic child can put real strain on a relationship.

> **Myth:** "Most parents of autistic children divorce." A US study of 77,911 parent interviews found "no evidence" that autistic children were more likely to live apart from one of their parents. The researchers describe the 80% figure as "speculation" ([Freedman et al. 2012](https://pubmed.ncbi.nlm.nih.gov/21590433/)).

The honest picture is mixed. A smaller study of 391 parents of autistic children found a higher divorce rate than in a comparison group, 23.5% compared with 13.8% ([Hartley et al. 2010](https://pubmed.ncbi.nlm.nih.gov/20731491/)). In another study of almost 500 parents' written answers, many described "huge strain", while a "small number" said it had strengthened their marriage ([Kennedy Krieger Institute](https://www.kennedykrieger.org/stories/interactive-autism-network-ian/whats-truth-about-autism-and-marriage)).

What may help: regular breaks (the respite study above found better marriage quality for both partners), sharing the night shifts, and a little time as a couple, even an hour. If you are parenting alone or co-parenting from two homes, the rights above still apply to you.

## Where can I get help, day or night?

You do not have to be in crisis to call. Save 116 123 and 85258 in your phone now, so they are there if you need them. These numbers were checked in September 2026.

| Who | What for | How to contact |
|---|---|---|
| [Samaritans](https://rocksmakepebbles.co.uk/where-to-get-help#samaritans) | Anyone who is struggling, any time | 116 123, free from any phone ([Samaritans](https://www.samaritans.org/how-we-can-help/contact-samaritan/)) |
| [Shout](https://rocksmakepebbles.co.uk/where-to-get-help#shout) | Free, confidential text support, 24/7 | Text SHOUT to 85258 ([Shout](https://giveusashout.org/)) |
| [Carers UK](https://rocksmakepebbles.co.uk/where-to-get-help#carers-uk) | Carers' rights, assessments and benefits | 0808 808 7777, Monday to Friday, 9am to 6pm, including bank holidays ([Carers UK](https://www.carersuk.org/help-and-advice/helpline-and-other-support/)) |
| [Contact](https://rocksmakepebbles.co.uk/where-to-get-help#contact) | Families with a disabled child aged 0 to 25 | 0808 808 3555, Monday to Friday, 9.30am to 5pm (from 10.15am on Tuesdays) ([Contact](https://contact.org.uk/about-contact/contact-us/)) |
| [YoungMinds Parents Helpline](https://rocksmakepebbles.co.uk/where-to-get-help#youngminds) | If you are worried about your child's mental health | 0808 802 5544, weekdays from 9.30am ([YoungMinds](https://www.youngminds.org.uk/parent/parents-helpline-and-webchat/)) |

The [National Autistic Society](https://www.autism.org.uk/advice-and-guidance/help-and-support) also has a 24/7 online community. For your own health, your GP is the first stop. For money, our guide to [DLA for autistic children](https://rocksmakepebbles.co.uk/guides/dla-for-autistic-children) explains the main benefit.

> **Scotland, Wales and Northern Ireland:** The rights above apply in England, so elsewhere ask your council or social services about carer support and short breaks, or call Contact (UK-wide). For urgent mental health help, call 111 and press 2 in Wales ([NHS 111 Wales](https://111.wales.nhs.uk/encyclopaedia/m/article/mentalhealthandwellbeing)), or NHS 24 on 111 in Scotland ([NHS 24](https://www.nhs24.scot/)). [Breathing Space](https://breathingspace.scot/) is for over-16s in Scotland feeling low, and [Lifeline](https://rocksmakepebbles.co.uk/where-to-get-help#lifeline-ni) in Northern Ireland is free, 24/7, on 0808 808 8000 ([Lifeline](https://www.lifelinehelpline.info/)).

## Questions parents ask

### Is it normal to feel this exhausted all the time?

Many parents of autistic children feel worn down, and research backs that up. Parents of autistic children report more parenting stress than other parents on average, and a 2020 review estimated that about 31% had a depressive disorder and about 33% an anxiety disorder. This reflects how much you are carrying, not a failing on your part. If rest no longer helps, or you feel low or anxious most days, talk to your GP and ask for practical support too.

### Am I a carer if I'm just their mum or dad?

Yes. In England, the law calls you a parent carer if you are 18 or over and you care, or will care, for a disabled child you have parental responsibility for. That gives you the right to ask your council for a parent carer needs assessment of your own needs, separate from your child's. You may also hear it called a carer's assessment. The NHS says a carer's assessment is free.

### What is a parent carer needs assessment, and does it cost anything?

It is your council's assessment of what support you need as a parent carer, taking account of your wellbeing, your wishes and your other children. In England, the council must do one if you ask, or if it looks as though you may need support, and it must give you a written record. The NHS says a carer's assessment is free and looks at your health, work, free time and relationships. Ask the council's children with disabilities team.

### How do I get a break when nobody else can manage my child?

Ask your council about short breaks. In England, councils must provide a range of them, which can include day-time care in your home or elsewhere, overnight care, and activities in the evenings, at weekends and in the school holidays. Ask for a parent carer needs assessment and the council's short breaks statement. If the council agrees your child needs a service, you can ask for direct payments to arrange help yourself.

### I feel guilty wanting time away from my child. Is that wrong?

No. Needing a break is part of caring, not a failure of it. NICE, which writes guidance for the NHS in England, says families should be told about their right to short breaks. The law in England tells councils to think about parents who could care more effectively if they had breaks. In one study of 101 couples, more hours of respite care were linked with less daily stress and better relationships.

### Is it true that most parents of autistic children split up?

No. The often-repeated 80% divorce figure has no good evidence behind it. A large US study of 77,911 parent interviews found no evidence that autistic children were more likely than other children to live apart from one of their parents. One smaller study did find a higher divorce rate, 23.5% compared with 13.8%, so strain is real, but break-up is not inevitable. Regular breaks were linked with better relationships in one study.

### Who can I talk to at 2am?

You can call Samaritans free on 116 123 at any time, or text SHOUT to 85258 for free, confidential text support, 24 hours a day. If you feel you cannot keep yourself or your child safe, call 999 or go to A&E. For urgent help that is not an emergency, call 111 and choose the mental health option, or in Northern Ireland call Lifeline on 0808 808 8000. The National Autistic Society also has an online community that is open 24/7.

## Sources

1. [GP out of hours service](https://www.nidirect.gov.uk/articles/gp-out-hours-service), nidirect, 26 November 2024
2. [The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder (Hayes and Watson)](https://pubmed.ncbi.nlm.nih.gov/22790429/), Journal of Autism and Developmental Disorders, 2013
3. [Psychopathology in parents of children with autism spectrum disorder: a systematic review and meta-analysis of prevalence (Schnabel et al.)](https://pubmed.ncbi.nlm.nih.gov/31070044/), Autism, 2020
4. [A population-based investigation of behavioural and emotional problems and maternal mental health (Totsika et al.)](https://pubmed.ncbi.nlm.nih.gov/20649912/), Journal of Child Psychology and Psychiatry, 2011
5. [Experiences of autism diagnosis: a survey of over 1000 parents in the United Kingdom (Crane et al.)](https://pubmed.ncbi.nlm.nih.gov/25810370/), Autism, 2016
6. [Positive perceptions in families of children with developmental disabilities (Hastings and Taunt)](https://pubmed.ncbi.nlm.nih.gov/11853529/), American Journal on Mental Retardation, 2002
7. [Your health and wellbeing](https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/), Carers UK
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9. [Where to get urgent help for mental health](https://www.nhs.uk/nhs-services/mental-health-services/where-to-get-urgent-help-for-mental-health/), NHS, 26 April 2023
10. [Contact a Samaritan](https://www.samaritans.org/how-we-can-help/contact-samaritan/), Samaritans
11. [Shout 85258](https://giveusashout.org/), Shout
12. [Stress (including NHS Talking Therapies)](https://mentalhealth-uk.org/help-and-information/stress/), Mental Health UK
13. [Respite care, marital quality, and stress in parents of children with autism spectrum disorders (Harper et al.)](https://pubmed.ncbi.nlm.nih.gov/23529841/), Journal of Autism and Developmental Disorders, 2013
14. [Carers' breaks and respite care](https://www.nhs.uk/social-care-and-support/support-and-benefits-for-carers/carer-breaks-and-respite-care/), NHS, 1 May 2026
15. [Autism spectrum disorder in under 19s: support and management (CG170)](https://www.nice.org.uk/guidance/cg170/chapter/Recommendations), NICE, June 2021
16. [No Words Needed: a survey on how parents of children with neurodevelopmental disorders perceive (in)formal peer support (Verkooijen et al.)](https://pubmed.ncbi.nlm.nih.gov/41906793/), Child: Care, Health and Development, 2026
17. [Listening Ear](https://contact.org.uk/help-for-families/listening-ear/), Contact
18. [Parent to Parent emotional support service](https://www.autism.org.uk/advice-and-guidance/help-and-support/parent-to-parent-helpline), National Autistic Society
19. [Autism Central](https://www.autismcentral.nhs.uk/), Autism Central (Anna Freud, commissioned by the NHS)
20. [National Network of Parent Carer Forums](https://nnpcf.org.uk/), NNPCF
21. [Unmasking fatherhood: mental health experiences among fathers of autistic children (Ng et al.)](https://doi.org/10.1111/jan.70702), Journal of Advanced Nursing, 2026
22. [The effectiveness of mindfulness-based interventions for children with autism and their parents: a systematic review and meta-analysis (Peng et al.)](https://pubmed.ncbi.nlm.nih.gov/40657585/), Frontiers in Psychology, 2025
23. [Children Act 1989, section 17ZD: parent carers' needs assessments](https://www.legislation.gov.uk/ukpga/1989/41/section/17ZD), legislation.gov.uk
24. [Carer's assessments](https://www.nhs.uk/social-care-and-support/support-and-benefits-for-carers/carer-assessments/), NHS, 1 July 2022
25. [The Breaks for Carers of Disabled Children Regulations 2011](https://www.legislation.gov.uk/uksi/2011/707/made), legislation.gov.uk, 2011
26. [Children Act 1989, section 17A: direct payments](https://www.legislation.gov.uk/ukpga/1989/41/section/17A), legislation.gov.uk
27. [Carer's Allowance](https://www.gov.uk/carers-allowance), GOV.UK
28. [Carer's Allowance: eligibility](https://www.gov.uk/carers-allowance/eligibility), GOV.UK
29. [Support for a child without a diagnosis](https://www.scope.org.uk/advice-and-support/find-support-services-before-child-diagnosed), Scope, 15 July 2026
30. [Relationship status among parents of children with autism spectrum disorders: a population-based study (Freedman et al.)](https://pubmed.ncbi.nlm.nih.gov/21590433/), Journal of Autism and Developmental Disorders, 2012
31. [The relative risk and timing of divorce in families of children with an autism spectrum disorder (Hartley et al.)](https://pubmed.ncbi.nlm.nih.gov/20731491/), Journal of Family Psychology, 2010
32. [What's the truth about autism and marriage?](https://www.kennedykrieger.org/stories/interactive-autism-network-ian/whats-truth-about-autism-and-marriage), Kennedy Krieger Institute, Interactive Autism Network
33. [Helpline and other support](https://www.carersuk.org/help-and-advice/helpline-and-other-support/), Carers UK
34. [Contact us](https://contact.org.uk/about-contact/contact-us/), Contact
35. [Parents Helpline and webchat](https://www.youngminds.org.uk/parent/parents-helpline-and-webchat/), YoungMinds
36. [Help and support](https://www.autism.org.uk/advice-and-guidance/help-and-support), National Autistic Society
37. [Lifeline](https://www.lifelinehelpline.info/), Lifeline (Northern Ireland)
38. [Breathing Space](https://breathingspace.scot/), Breathing Space (Scotland)
39. [Mental health and wellbeing: 111 option 2](https://111.wales.nhs.uk/encyclopaedia/m/article/mentalhealthandwellbeing), NHS 111 Wales
40. [NHS 24](https://www.nhs24.scot/), NHS 24 (Scotland)

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General information for families in the UK, not medical, legal or financial advice. If you are worried about your child's health, contact your GP or call NHS 111 (in Northern Ireland, your GP out of hours service). In an emergency, call 999.