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Respite Care for Autism: A Caregiver’s Well-Deserved Break

March 11, 2024

For parents of children with autism, the demands can be overwhelming. Balancing constant care with personal needs is challenging. That’s where respite care for autism comes in. It provides a much-needed break, allowing parents to recharge, focus on other family members, or engage in personal activities.

You don’t have to wait for a crisis to benefit from it. Respite services offer vital support, offering short breaks that can prevent burnout and promote family well-being. Services vary by location and duration, providing flexibility to meet individual needs. Let’s learn more about it.

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What are the different respite services available?

Some of the different services autism families might wish to make use of include:

  • Childminders: You might wish to match your child with a local childminder who has completed training relevant to caring for children with autism or disabilities. Childminders tailor activities to include all of the children’s needs and interests whilst following each child’s level of development. They will also take children out to local groups, activities, and places of interest.
  • Support Workers: A support worker can provide one-to-one care for a child in the family’s home. They will also take the child out in the local community. Parents can use the time to care for other children, exercise, rest, relax, or enjoy any activity of their choice.
  • Sitters: A sitter can provide one-to-one care for a child (and sibling) in the family’s home during the evening so the parents can go out. Autism families should ensure they choose someone who is familiar with any additional requirements their child with autism might have.
  • Buddies: In the UK and some other countries, a Buddy service (or programs of a similar name) can be used. In the UK, “buddies” are aged 16 + and are paired with an autistic student aged 14-25 years old. They meet on a regular basis and go to the cinema, bowling, out for lunch, shopping, or any specific activity the young person wishes to engage in.
  • Daycare away from home: You can make use of nurseries, pre-schools, schools, and playgroups during term time, plus out-of-school and weekend clubs. During school holidays, options might include access to local playschemes.

What is residential respite care for autism?

Short breaks can be accommodated at your home, where the sitter or carer stays with your family overnight to allow you to get a night’s sleep, or for you to go away for the weekend. Alternatively, residential respite care is where the child stays at a residential home, special units in hospitals, or specially adapted sites, which are fully equipped with games and child/teen-oriented facilities.

Some regions also offer family link schemes where the child would stay with another family occasionally or on a regular basis to offer their loved ones respite. Some local authorities in the UK offer Universal short breaks, which means that they are open for ASD children to access without an assessment.

How to proceed

To set up respite care, start by contacting your local council or a charity that provides these services. In the UK, councils are obligated to offer short breaks and guide families on accessing them. 

Your child’s needs will be evaluated by the appropriate team, who will suggest the most suitable respite care and caregiver for you. Your local authority can also advise on eligibility for different types of respite care and provide details about local organizations offering daily activities.

How much does respite care for autism cost?

Cost options for respite care are best discussed with your local authority, as each would have its own charting policy.

As a whole, in the UK, if you qualify for respite care provision, you will not need to pay. If a parent does not qualify for free support, the local authority can advise as to respite services that can be paid for independently.

People can also pay independently for respite services with private providers. Various organizations and residential centers provide short-stay overnight care as well as more permanent live-in care.

Most centers have flexibility with regard to the length of stay – some parents leave children there for several hours, some overnight. Your family’s needs can be discussed with the specific provider.

It’s okay to take a break

Respite care for children with autism can have a significant, often life-changing, impact on families’ lives. Making the most of the various options available is a safe way to help your family function better so you can spend more time with your ASD child’s siblings and, most importantly, help stop your family from reaching a crisis point.




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FAQs

Q: Who pays for respite care for autism?

A: Respite care for autism is often funded through a combination of sources, including government programs, private insurance, and out-of-pocket expenses. Funding eligibility and coverage vary depending on factors such as location, income, and specific needs of the child.

Q: Where do most autistic adults live?

A: Most autistic adults live with their families or independently in their own homes. Some may also reside in specialized supported living accommodations or group homes.

Q: How stressful is it for parents with an autistic child?

A: Caring for an autistic child can be extremely stressful, as parents often must adapt their entire lives to meet the child’s needs, leaving little time for self-care or personal activities. The constant demands of providing care and support can lead to emotional and physical exhaustion.

Q: How does respite care work?

A: Respite care provides temporary relief for caregivers by offering professional support to care for their loved ones, allowing caregivers to take a break. It can be arranged through local councils or charities, which assess the needs of the individual and match them with suitable caregivers or facilities.

References: 

Cooke, E., Smith, V. & Brenner, M. Parents’ experiences of accessing respite care for children with Autism Spectrum Disorder (ASD) at the acute and primary care interface: a systematic review. BMC Pediatr 20, 244 (2020). https://doi.org/10.1186/s12887-020-02045-5 

Christi, R.A., Roy, D., Heung, R. et al. Impact of Respite Care Services Availability on Stress, Anxiety and Depression in Military Parents who have a Child on the Autism Spectrum. J Autism Dev Disord 53, 4336–4350 (2023). https://doi.org/10.1007/s10803-022-05704-x 

Bonis S. Stress and Parents of Children with Autism: A Review of Literature. Issues Ment Health Nurs. 2016;37(3):153-63. doi: 10.3109/01612840.2015.1116030. PMID: 27028741. https://pubmed.ncbi.nlm.nih.gov/27028741/ 

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