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.

Duties of Social Services

Your Health and Social Care Trust (HSCT) has a number of duties towards you and your child. Every HSCT must protect and promote the welfare of children in need living in the area. It does 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 (SSD) that carries out these duties is usually called ‘Children’s Services’ or ‘Children and Families Services’. Children with disabilities have a right to an assessment under Article 18 of the Children (NI) Order 1995.  The HSCT then has a duty to provide any services necessary to meet their needs. In theory this means that the HSCT could fund virtually anything if it is necessary for the child’s development. In practice, disabled children and their families tend to be offered residential and home-based respite care but very little else.

Your child may be entitled to an assessment of their needs even if they do not yet have a formal diagnosis of autism. This is because Article 18 of the Children (NI) Order 1995 applies to all ‘children in need’. You can find out more about assessment in our guide. 

What needs do I have?

All autistic children are individual and have different needs. Your needs as a parent will also vary depending on a range of factors, such as how much money you have, whereabouts you live, how supportive your friends and family are and how many children you 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 use 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).

What services can be provided?

The range of home based services that a local authority can provide to people with disabilities are outlined in the Chronically Sick and Disabled Persons (NI) Act 1978. These services can be made available to both children and adults and include: 

Practical assistance in the home
This might mean having someone come to your home to help with cleaning or cooking. If your child has physical needs, practical assistance could mean helping them to wash, dress or get out and about. It can also mean an extra pair of hands during stressful parts of the day.

Home devices 
This could include the purchase of a computer, wireless radio or a TV.

Lectures, games, outings and other recreational/educational facilities 
Recreational/educational facilities include places in activity clubs and play schemes. These services must be provided outside the home.

Assistance in travelling to community-based care services
The local authority is entitled to charge for transport provision. However, it must ignore the mobility component of DLA (if you get it) when making its assessment.

Other services include:

• home adaptations
• holidays
• meals (at home or elsewhere)
• a telephone

The Children (NI) Order 1995 outlines additional services that are available to children living with their families. The range and level of services are left to individual Trusts' discretion but generally include: 

• day care for pre-school children 
• holiday and out of school care for school – age children 
• services for disabled children 
• advice, guidance and counselling 

Short breaks (respite)

Respite care can be provided to autistic children and their families if it is identified as a need by your HSCT. Some short break services are specifically for autistic children whilst others are generic services for children with all types of disabilities. Whilst it does not always matter whether a service is autism-specific or not, it is important that the people caring for your child understand autism.  

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.

Accommodation

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. Article 21 of the Children (NI) Order 1995 says that the HSCT has a duty to accommodate children when ‘the person who has been caring for him (is) prevented (whether or not permanently, and for whatever reason) from providing him 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 Article 21 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 the child home at any time if you change your mind. To keep a child in care without the parent's agreement the HSCT needs a Court Order and these are only given if the child would be at risk at home.

The Disability Register

All HSCTs are obligated to keep a record of everyone living in the area who has a disability. You do not have to register your child and not registering them will not affect their entitlement to services. Your child will not be accepted onto the disability register until they have a formal diagnosis. The Disability Register is used by HSCTs when they are planning their services. For example, children’s services may have some funding to develop a parent support group and consult the register to see which disability is prevalent in the area and would benefit from this funding.