Time out for the family

This is autism awareness year, and the needs of children with
autistic spectrum disorders (ASD) are coming to the forefront of
service providers’ minds as they recognise that the number of
children with these disorders is increasing.1 Research to be
published soon investigates the impact on family life of having a
child with such a disorder, and the provision of short breaks for
children and teenagers affected.2

The term autistic spectrum disorder acknowledges the fact that
autism occurs in varying degrees of severity and in various forms.
Autism is a developmental disability. People with autism have
impairments in social interaction, social communication and
imagination. Their ability to develop friendships is impaired, as
is their capacity to understand other people’s feelings and
emotions. They have a rigidity of thought that results in
over-literal understanding and excessively logical thinking.
Although they are not usually physically disabled, large numbers of
children with autism also have learning difficulties.

These children often need 24-hour care from their parents or
carers, which places an enormous stress on the family.

Short-break (respite) services could be a vital support system for
these families. Services such as play schemes, after-school and
youth clubs, domiciliary and outreach services, sitting,
befriending, family-based and residential short-break services
offer children the opportunity to do new things, while their
parents and siblings have some time to themselves.

However, the research found that many families often struggle on
alone, feeling that the impact ASD has on their lives is not
understood by friends, family and even some professionals and
service providers. Also, parents feel that the public is
“suspicious” of or even frightened by autism, and that many people
do not understand the term. Consequently, many parents of children
with ASD have to fight for recognition of their child’s needs
within their family as well as having to cope with criticism of
their parenting skills. Similarly, they are often unable to access
community services in the way other parents can. They struggle to
find a babysitter or childminder who understands their child’s
individual needs, and they have to accompany their child to
community activities such as cubs or scouts.

Short breaks were shown to benefit the child or teenager by
providing new experiences and activities, opportunities to
socialise in supportive environments and independence from their
family. And parents had time to relax and do chores or spend time
with their other children.

Such services are provided successfully for some families; a
quarter of the children using short-break services had ASD.
However, demand is far outstripping supply. The number of children
with ASD waiting for services is almost as high as the number of
children with ASD using services. Children with ASD make up a third
of those on waiting lists held by services.

Two-thirds of the parents who are accessing services did not have a
choice of services because only one or two were available to them.
The main services used were play schemes, family-based short breaks
and residential short breaks. But families who were not using
services required a flexible mix of three or more services that
could respond to children’s and families’ needs. They needed
specific support in the holidays as well as ongoing regular
support.

The key services requested by just under half of the parents were
sitting services and play schemes, particularly in school holidays.
More than 30 per cent wanted youth clubs, family-based short
breaks, after-school clubs, befriending and domiciliary support.
Fifteen per cent requested residential short breaks.

To meet these requests, which are additional to the short breaks
already being provided, services would have to increase their
capacity substantially. Some services would need to be specifically
for children with ASD so they could respond to behaviour that
challenged mainstream services.

Services would also need to respond to the needs of young people
with “high functioning” autism or Asperger’s syndrome – who at
present struggle to access services for disabled children as they
do not have IQ-related learning difficulties. They need a great
deal of support to access social environments and are recognised as
children in need by the Valuing People white paper.

Ensuring short breaks are appropriate for children with ASD takes
time, understanding, partnership and detailed planning. This
increases the cost of service provision at a time when short-break
services are already struggling with a lack of workers and, often,
a lack of funding.

Non ASD-specific services also need to improve their understanding
of ASD. When asked what support they required to provide short
breaks for children with ASD, more than three-quarters of service
co-ordinators wanted basic factual information about ASD, while
two-thirds wanted specific training in ASD for their staff and
volunteers.

Considerable commitment is required to enable services to provide
consistent, high-quality services with appropriate staffing levels
for the growing number of children with ASD. This needs to be
recognised, and not just during this year or during next week’s
Share the Care week, which is focusing on the recruitment of
short-break carers for children with ASD.

The Research

The Better for the Break research was carried out at the Norah
Fry Research Centre for Shared Care Network. It included
discussions with six adults with ASD, questionnaire surveys of 271
parents (135 who used services and 136 who did not) and 371 service
providers. Of the service providers, 217 were for disabled children
only, 124 were integrated (disabled and non-disabled children) and
31 were for children with ASD only.

Key points

Partnership with parents and other agencies.

Accepting the child as they are.

Preparing the child for their short break.

Lengthy introductions to the service.

Careful matching of workers with children, using a special
interest.

High level of support for children.

Detailed individual planning.

Consistency of factors such as workers, timing of service and
children in group.

Safe accommodation with quiet space.

High level of training and support for staff.