Once considered to be a very rare condition, diagnosed mainly in children with severe intellectual impairments and no or very limited language, it is now known that autism can occur in individuals of all cognitive and linguistic levels and that its effects are lifelong. Awareness of this wider spectrum has resulted in a steady decrease in age at first diagnosis (Fountain et al, 2011) and an increase in prevalence estimates from approximately 4 per 10 000 in the 1970s to around 1 per 100 (Baird et al, 2006). These changes have resulted in much greater research into the effectiveness of different interventions and there has been a particular focus on developing programmes for newly diagnosed preschool children. The present chapter focuses on current evidence for the effectiveness of psychosocial interventions, but further information on a wide range of other interventions can be found at the Research Autism website (www. researchautism.net). The aim of this website, which is associated with the UK National Autistic Society, is to review the published evidence on interventions in popular use. Over 100 interventions are currently listed, and the quality of evidence (both favourable and unfavourable) is rated by independent experts. The website covers developmental, educational, psychological, pharmacological and ‘alternative’ or ‘complimentary’ therapies (e.g. pet therapies, special diets and vitamin supplements, and some potentially hazardous interventions such as chelation, testosterone regulation and hyperbaric oxygen).

Interventions for children with autism

There are a number of psychologically based interventions for which the evidence base is improving. These include interventions designed to enhance cognitive and behavioural functioning, and those that focus on the specific deficits associated with autism, particularly in the areas of communication and social skills.

Behavioural interventions

The effectiveness of behaviourally based strategies for children with autism was initially demonstrated in the 1960s, although the focus then was predominantly on the elimination of ‘undesirable’ behaviours, notably tantrums, aggression and self-injury, with frequent use of aversive procedures, including electric shock.

Throughout the 1970s, treatment was largely conducted on an in-patient hospital basis, often with very little involvement of the child's family. The procedures used to improve skills such as social interaction and communication were frequently highly prescriptive and inflexible, and took little account of individual factors such as the child's developmental level or the family situation.

Editor's note

Autism and other developmental disorders have led many parents and families to seek alternative or miracle cures because traditional treatment has had, at best, only mild success here. Yet none of these ‘miracle treatments’ has any evidence of efficacy or effectiveness. Psychopharmacologic interventions that target specific behaviours or symptoms have had some success, and these interventions are more readily used in the USA than in the UK. Educational programmes that provide structure and a predictable schedule and have consistency in the people who deliver the programme do appear to be able to deliver some modest improvement especially if the learning is closely tied to visual cues. Interventions that are behavioural in approach also appear to have some modest success in modifying behaviour especially around communication and social interaction. Again the improvements here are modest and probably have greater success in children who are at the milder end of the developmental disorder or autistic spectrum. A great deal of work needs to be done to empirically test these interventions to identify what elements appear to have the greatest impact on what aspect of these difficult disorders.

Introduction

When the first accounts of autism appeared in the 1940s and 1950s, the condition was considered to be a psychiatric disorder of psychogenic origin. Consequently, the principal treatments were psychoanalysis, medication or interventions such as ECT, as used for patients with psychosis (see Campbell, 1978).

Accounts of adults with autism spectrum disorders (ASD)

Despite the ever-increasing number of publications on the topic of autism, relatively little has been written about outcome in adulthood. Moreover, the accounts that are available can present a very confusing picture to families seeking to know what may become of their son or daughter as they grow older. On the one hand, the problems shown by adults with ASD often feature prominently in books or papers dealing with “challenging behaviors” (Clements & Zarkowska, 2000). Lurid accounts of crimes committed by individuals with Asperger's syndrome also appear from time to time in daily newspapers. In contrast, there are impressive personal narratives by people with autism spectrum disorders (ASDs) who have managed to cope admirably with many of the problems they have encountered throughout their lives (see for example autobiographical accounts by Gerland, 1997; Grandin, 1995; Holliday Willey, 1999, Lawson, 2002; Williams, 1992, 1994). There are individual case reports, too, of individuals who, although impaired in many aspects of their functioning, show remarkable skill in certain specific areas, such as art, music, or numerical calculations (Hermelin, 2001).

In fact, most people with ASD fall into none of these categories, but families are provided with very little guidance or information on what the future is likely to hold.

Much of the research and the majority of descriptive and clinical accounts related to developmental or early onset genetic disorders have an understandable focus on children. The parents of young children with such conditions have a pressing need to know why the disorder has occurred, whether it can be prevented, what are the genetic implications for other family members, what the long-term outcome is likely to be and perhaps most importantly what they can do to help their child. As time moves on, teachers and others responsible for educational provision need to know what problems these children are likely to face in gaining access to the regular school curriculum and what extra help will be needed in order to meet any special educational needs. And, at every stage, paediatricians, child psychologists and psychiatrists, health visitors, language therapists and many other professionals are likely to be called on for support and advice. It is clearly crucial therefore that those involved in the care, education or therapy of children with developmental and genetic disorders are fully apprised of the nature of the problems with which they have to deal, and of how they can help to minimize difficulties, enhance skills and prevent the development of secondary problems.

However, conditions such as Rett syndrome, fragile X or autism do not suddenly disappear around the age of 16 to 18 years. Neither do problems related to language, specific learning difficulties or attentional deficits cease at these ages.