Principled approach

Family support services such as short breaks, domiciliary or
outreach services, befriending schemes, youth and after school
clubs and play schemes have long been recognised as providing vital
support to families with disabled children.

But service providers often find it difficult to include children
and young people with autistic spectrum disorders in these
services. As a result, parents of children and teenagers with ASD
are often struggling with little support. The final stage of a
recent research study set out to investigate how family support and
short-break services can be provided appropriately for these
families.

Overall, our findings highlighted that all service providers must
ensure that the child’s needs and views are central to service
provision – a vision shared by all the recent initiatives for the
development of good practice. More specifically, the research
established six basic principles for working with families with
children with ASD. These principles are fundamental and could help
ensure all disabled children’s needs are met appropriately by
services.

For those providing services, a basic understanding of autistic
spectrum disorders is fundamental. Professionals need to understand
the child and their views, their parents’ deep concerns about their
welfare, the way services need to be consistent and tightly
co-ordinated, and the need for children and teenagers to be
provided with a safe environment and a feeling of control.

1 The first principle is knowing about the child
and their views. This recognises that each child and teenager has
their own unique personality. Carers need to spend time to get to
know the child, their ways of communicating, interests and
sensibilities, as well as the issues that trigger anxiety. This
knowledge will also underpin respect for the routines and rituals
that a child needs in order to feel in control. Another aspect of
this principle is that children should be involved in choosing the
services they use, and in planning and reviewing these
services.

2 The second principle is respecting parents and
developing their trust. Services must recognise that parents are
the experts on their child, and that their child’s welfare is of
paramount importance to them. As noted above, parents have often
supported and cared for their child with little outside help and
can be worried that carers will not know how to treat their child
or be able to cope. Conversely, they may cope too well, and leave
parents feeling threatened or undermined. In order to ensure
parents trust, service providers and front-line workers must show a
detailed understanding of and commitment to their child and be
proactive in communicating with parents throughout service
provision.

3 The third principle is about the importance of
team and multi-agency working – a common theme. Children with ASD
need consistent support, for example, in the way their behaviour is
responded to, and so all agencies involved in the child’s life
(education, health, social services and voluntary organisations)
need to work together. This demands time, thoroughness and a
professional approach that makes no assumptions regarding the
individual’s needs or the way other agencies respond to them.

4 The fourth principle relates to providing
children with a feeling of control. Children and young people with
ASD have difficulty with knowing what is going on, and with
predicting what should happen next. Anxiety is often shown through
withdrawing into themselves or self-stimulation through repetitive
acts such as switching light switches on and off or challenging
behaviour.

In order to ensure children and young people with ASD understand
what is happening and feel a level of control over their services
or activities, services and parents need to: plan introductions to
services or new activities, prepare the child for what will happen,
and ensure the child knows when the service is going to end.

5 The fifth principle relates to the lack of
awareness of danger, or of the consequences of their actions many
children with ASD show. Services for these children need to provide
a safe environment. Carers need to be vigilant, and to have strong
boundaries which are consistent. Workers and carers should also
think carefully about the possible implications of grouping
children and young people, and ensure there is a quiet space in
group environments that children can use when they need to. They
should also be aware that children often find security and safety
in their routines.

6 The sixth principle recognises that children
with autistic spectrum disorders can and do develop and take more
control over their lives. Services play a vital role in developing
children’s independence by widening their experience of new
environments and people. But this relies on carers helping
children’s communication, so that they can increase their choice
of, and involvement in, appropriate activities. They also need to
support their development through providing new activities and
introducing them appropriately, and taking opportunities as they
arise.

These principles are based on thinking through each individual’s
needs in order to provide tailored, appropriate services for
children with ASD and their families. Developing sound
understanding and real relationships are crucial to this, but these
need time, commitment and communication from service providers to
develop.

What is autism?   

 Autism is a lifelong developmental disability that affects the
way a person communicates and relates to other people. The ability
to develop friendships is impaired as is the capacity to understand
other people’s feelings and emotions. People with autism have
impairments in social interaction and communication and
imagination. These difficulties result from underlying problems in
the brain function responsible for evaluating meaning and
recognising the significance of situations. They impair the sense
of self and affect the individual’s ability to feel involved and
their memory of what has happened to them. While a person with
autism spectrum disorder can be very emotional, they find it
difficult to make sense of their own feelings. Autistic spectrum
disorders acknowledges that autism occurs in differing degrees of
severity and in a variety of forms.

The research 

The study focused on 20 children being provided with a variety
of services, for example residential short breaks, regular sessions
with an sessional worker, monthly attendance at a Saturday play
scheme or family-based short breaks and a play scheme in the
summer.  

Only one of the eight areas involved in the research offered
services specifically for children and young people with ASD. The
other seven offered services for disabled children, and were
successfully providing breaks and support for children and
teenagers with ASD.  

Eighteen boys and two girls were involved in this study, ranging
in age from five to 20 years. Two of the male teenagers were
described as having Asperger’s syndrome while most had learning
difficulties.  

The research was funded by the Community Fund and undertaken at
the Norah Fry Research Centre in association with Shared Care
Network.   

Beth Tarleton is a research fellow at the Norah Fry
Research Centre.  For a pack on working with families of children
with ASD contact Barnardo’s tel 01268 522 872, fax 01268 284 804,
or e-mail:
despatch.services@barnardos.org.uk