SCIE Research briefing 32: Access to social care and support for adults with autistic spectrum conditions (ASC)

By Richard Mills, National Autistic Society and Research Autism, and Jennifer Francis, SCIE

Published April 2010

Review date: April 2013

Introduction

The term ‘autistic spectrum conditions’ (ASC) is used throughout this briefing to describe what were previously called autistic spectrum disorders (ASD) and is the one now preferred by the Department of Health in England. However, the term is seldom used in the scientific literature or in other countries and for this reason is potentially confusing and problematic.

Autism spectrum conditions are present from birth or very early life and are classified in the International Classification of Diseases (ICD-10) as pervasive developmental disorders (PDD). They include childhood autism, Asperger’s syndrome, atypical autism and PDD unspecified. In practice many of these conditions may overlap with other disorders. Affecting more boys than girls, although the prevalence in girls is said to be underestimated these conditions are neurobiological and characterised by significant impairments in instinctive social behaviour, reciprocal communication and a restricted or repetitive repertoire of behaviours and interests.

These ‘core’ features will affect the person’s ability to anticipate the thoughts and actions of others and predict day-to-day outcomes on the basis of normally occurring social cues. This lack of ability to anticipate and predict leads to high levels of stress and difficulties in relating to others. Such difficulties may be accompanied by other neurological or psychiatric conditions that impact on behaviour and functioning and on access to services and support. Such conditions include, but are not limited to, disorders affecting sensory processing, anxiety, depression and mood, seizures and other medical problems. These co-morbid conditions are often treatable in the same way as in the non-ASC or so called, ‘neurotypical’ population. (‘Neurotypical’ is the preferred term used by many with ASC to describe people without ASC.)

Individuals with ASC have widely differing levels of IQ and social functioning. The causes are unknown but genetic factors are important. An absence of neat dividing lines between the different forms of the condition and its variability can comprise a perplexing juxtaposition of ability and disability and an absence of usual development alongside the presence of the unusual. It is this complex and often fascinating presentation, the unusual combination of high-level skills alongside deficits, that is the cause of much misunderstanding of the nature of ASC, affecting decisions about help and support.

Autistic spectrum conditions affect around one in one hundred of the general population but people with such conditions are highly heterogeneous. A range of provision is required. The nature of the spectrum means that not all will require intensive services but most will need at least some level of understanding and support at some stage in their lives. Diagnosis is very important but it should be borne in mind that no two individuals will be completely alike and what helps one person will not necessarily help another. Assessment of need to go alongside diagnosis is therefore crucial. Diagnosis should therefore be seen as a process leading to helpful action and not merely acquiring a label.

Key messages

  • Outcomes for adults with autistic spectrum conditions (ASC) are generally poor. Many people with ASC experience unemployment; mental and physical ill-health, discrimination and social exclusion.
  • The evidence base evaluating services for people with ASC is weak.
  • There are significant variations between individual adults with ASC, so that ‘one size fits all’ practices are ineffective. Evidence suggests that adults with ASC benefit from services, e.g. employment and care, which adopt autism-specific approaches delivered via specialist, multi-disciplinary teams.
  • Access to social care is often problematic, compounded by the complexities of the autistic spectrum, by other health-related difficulties, the impact of eligibility criteria and the lack of specific services for adults with ASC.
  • The transition period of moving from children’s services to those for adults is problematic.
  • Individuals with ASC and additional intellectual disability generally have fewer problems in accessing support, often provided by local learning disability services. However these services may struggle to support individuals with additional or complex needs.
  • The condition and needs of more ‘able’ individuals with ASC may go unrecognised or be misdiagnosed.
  • More information is needed about individuals with ASC and additional sensory processing differences to enable them to access services.
  • Too few health or social care staff have sufficient expertise or experience for assessing or working with people with ASC.
  • Research is needed to investigate the lower take-up of social care among people from minority ethnic and cultural groups, women and older people with ASC.

About the development of this research briefing

Scoping and searching

Scoping was carried out in August 2009, with further searching in September 2009.

Research briefing methodology

SCIE research briefing methodology was followed throughout (inclusion criteria; material not comprehensively quality assured; evidence synthesised and key messages formulated by author): see research briefing methodology for a full description.

Peer review and testing

The author is a topic expert. Production, product and key messages were internally/externally peer reviewed by Project Advisory Group (including people who use services and carers).

Future work

A practice enquiry was subsequently commissioned (as evidence is sparse): a guide will be produced in 2011 based on these products.