Caring for an autistic child can be difficult. It can be hard work for parents who may have to provide far more help and support than they would for another child their age. It’s not always easy for siblings either. They may feel they have to take on caring responsibilities while still very young, or they may feel neglected because their autistic brother or sister takes up so much of their parents’ time.

In addition to these difficulties, the typical breaks that most parents may get because their children go to visit friends or are able to do things by themselves are often not an option. Families already under pressure have to spend more time supporting each other, not less. In these circumstances it isn’t surprising that families often find they need to ask for help.

This information looks at the range of help that may be available and how to get it. It refers to parents throughout but anyone caring for an autistic child may find it helpful. We also have information about social care for adults.

In the past there have been lots of different pieces of legislation that say how social services should assess children with a disability, who they should assess and who will be eligible for support. All these pieces of legislation have been replaced by the Social Services & Well- being (Wales) Act 2014. This Act just applies in Wales.

In this guide, when we say that social services have a duty to do something or that they are required to do something, this means that the Social Services & Well-being (Wales) Act 2014 (or the guidance/regulations that accompany it) say that they have to do this by law.

You can read the Act, its code of practice and regulations online. The code of practice is the most user-friendly document and is broken into separate documents relating to different parts of the Act.

Duties of Social Services

Your local authority has a number of duties towards you and your child. Every local authority must protect and promote the welfare of children in need living in the area. They do this in a number of ways, for example by:

• assessing the needs of children in need (including those with a disability)
• assessing the needs of carers
• providing services to meet identified needs
• providing information and signposting to other organisations
• maintaining a register of children with disabilities living in the area.

The social services department that carries out these duties is usually called 'Children's Services' or 'Children and Families Services'. Since 6 April 2014 children with disabilities have rights to an assessment under the Social Services and Well-being (Wales) Act 2014. This replaces the right to an assessment under Section 17 of the Children Act 1989. The local authority then has a duty to provide any services necessary to meet their needs.

Your child may be entitled to an assessment of their needs even if they do not yet have a formal autism diagnosis. This is because the Social Services and Well-being (Wales) Act 2014 applies to any child where it appears to the authority that the child may have needs for care and support in addition to, or instead of, the care and support provided by the child’s family.

The Social Services and Well-being (Wales) Act 2014 also replaces The Carers (Recognition and Services) Act 1995 and the Carers and Disabled Children Act 2000 and requires local authorities to assess the needs of carers and where necessary to provide services to meet those needs. If you as a parent request an assessment for your child you should also request a carer’s assessment. To find out more about your rights as a carer, you can read our support for carers information.
 

What needs do we have?

All autistic children are individual and have different needs. Parents needs also vary depending on a range of factors, such as how much money they have, whereabouts they live, how supportive their friends and family are and how many children they have.

It may help to define the kinds of needs you have by keeping a note of which periods during the day cause you the greatest stress. Ideally, as many members of the family as possible should do this. You can use a simple chart such as a tick sheet to record this. By the end of a week it should be very easy to see which times of day cause the greatest stress, or place the greatest demands on you as a parent.
 

What services do I need?

Being clear about what your needs are makes it much easier to identify which services you require. Sometimes it becomes clear that you need a combination of services, such as respite care to give you a break, and behaviour management advice to help you cope better.
The following list shows just some of the sources of support families can use. Not all families have access to all these different types of help.

Help that many families have access to includes:

• extended family
• family friends
• parent support groups
• GPs, health visitors, social workers and other concerned professionals
• advice, guidance and counselling services
• babysitters, childminders and nannies
• financial benefits such as disability living allowance (DLA).

Help that requires local authority funding includes:

• home-based respite carers
• centre-based short-term care: many local authorities run residential services which are dedicated to offering a respite service to families
• play schemes, after-school activities, summer camps and youth clubs
• residential schools.

What services can be provided?

Each child or young person’s needs are different so the support that is available to them will differ. Services could include the following if your child or young person has eligible needs:

• accommodation in a care home, children’s home or in premises of some other type (including a residential school)
• care and support at home or in the community
• services, goods and facilities
• information and advice
• counselling and advocacy
• social work
• payments (including direct payments)
• aids and adaptations
• occupational therapy.

For any of these support options to be put in place, your child or young person must have been assessed as having an eligible need for the service. You can read our information on assessments to find out more.
 

Short breaks (respite) and accommodation

Respite services will usually be provided to meet an eligible need and included in your child’s care and support plan. Not all children will be entitled to specialist respite care and some children’s needs may be met through mainstream services such as after-school clubs, preventative services run by charities or community-based services. If your child is not eligible for respite care provided through a care and support plan but you have said you need a break you should be signposted to services that will meet that need.
 
Sometimes families reach a point where their child’s needs are such that they are unable to care for them in the family home. This may be because of additional health needs or distressed behaviour. Under section 76(1)(c) of the Act, a local authority may provide accommodation for a child whose parent is ‘prevented (whether or not permanently, and for whatever reason) from providing the child with suitable accommodation or care’. This may mean placing the child with foster parents, in a care home or as a residential student at school if these facilities are available. When children are accommodated under this part of the Act the arrangement is voluntary and you retain parental responsibility. This means that you are still in charge of making decisions about your child's welfare and could have your child home at any time if you change your mind. To keep a child in care without the parent's agreement the local authority needs a Court Order and these are only given if the child would be at risk at home.

Sometimes respite care will be provided under section 76. This could be if it is arranged in an emergency.

Our Services Directory holds details of services and support. You could use this to look for respite services in your area that have experience of caring for autistic children.