ACTNOW Fact Sheet 18

Treatment and Management Programs for Children with Autism and their Families

- Jacqueline Roberts Ph.D. University of Sydney

This Fact Sheet is based on a comprehensive review titled ‘A review of the research to identify the most effective models of best practice in the management of children with autism Spectrum Disorders’ commissioned By the NSW Department of Aging, Disability and Home care (DADHC). For information about specific programs available in Victoria and contact details see the full review at Publications  www.dadhc.nsw.gov.au.

There are several important issues to take into account when we consider the evidence for the range of treatments and programs available for children with autism and their families:

• Cultural perceptions of the characteristics of autism vary as do ideas about the validity of autistic and non-autistic ways of perceiving the world.
• There is general agreement that we need a multi-disciplinary approach to the treatment and management of autism.
• Children and adults with autism vary a great deal from each other, as do families of children with autism.
• At times service providers make unsupported claims about potential outcomes of treatments/programs which can be very misleading and stressful for families.
• It is very difficult (but not impossible) to measure outcomes of programs in a way that means we can be certain about whether a program is effective or not.
• There is a lack of reliable information about the range of programs and potential treatment and management options available to families which this Facts sheet seeks in part to redress.

WHAT IS AVAILABLE?
WHAT DO WE KNOW ABOUT HOW EFFECTIVE THEY ARE?

Treatment and management may be psychodynamic, biological or educational/behavioural. The focus of this sheet is educational/behavioural programs available for children with autism and their families in Australia.

BEHAVIOURAL APPROACHES:

Behavioural approaches are based upon the principles of learning theory, that is, the idea that human behaviour is learned and governed by what happens before and/or after the behaviour. The theory assumes that children can learn new skills by modification of stimuli and the presentation of reinforcement. Behavioural strategies can be divided into three categories:

1. Antecedent interventions that are implemented before a target behaviour is likely to occur.
2. Consequence interventions that are implemented after a target behaviour.
3. Skill development interventions designed to teach new skills and alternative, adaptive behaviours.

It is essential to specify the nature of the behavioural intervention being discussed. Behavioural interventions may range from a social story to a discrete trial training program. Emerging trends in behavioural interventions include, positive behaviour support (PBS), functional assessment, and functional communication training (FCT).

Applied Behaviour Analysis (ABA)

Applied Behaviour Analysis (ABA) is the process of applying sometimes tentative principles of behaviour to the improvement of specific behaviours and simultaneously evaluating whether or not changes noted can be attributed to the intervention. The goal of ABA is to improve socially significant behaviours, such as adaptive living skills, to a meaningful degree. ABA is used to:

• Increase behaviours
• Teach new skills
• Maintain behaviours
• Generalize or transfer behaviour from one situation or response to another
• Restrict or narrow conditions under which interfering behaviours occur
• Reduce interfering or potentially harmful behaviours.

Discrete Trial Training (DTT) is one of the instructional methodologies frequently used in ABA-based programs. Each training trial, consists of four major components: Presentation of a brief, distinctive instruction or question (stimulus), the instruction is followed by a prompt, if the child needs one, to elicit the correct response, the child responds correctly or incorrectly (response), the teacher or therapist provides an appropriate “consequence.” Correct responses receive a reward, which may be an edible treat, a toy, hugs or praise; incorrect responses are ignored and/or corrected, data are recorded.

(Early) Intensive Behavioural Interventions (EIBI/IBI)

Early, intensive behavioural intervention (IBI or EIBI) appears to be a generic term that refers to behavioural interventions that are intensive and comprehensive. Severe behaviour disorders may be treated with intensive behavioural intervention. Proponents point out that children with autism typically do not learn from their environment spontaneously, and therefore need to be systematically taught what they need to learn. Intensive programs refer to the number of hours of treatment the child receives per week as well as the intensity of training, curriculum, evaluation, planning, and coordination. IBI/EIBI intervention programs recommend between 30-40 hours of child: therapist sessions per week, usually for at least 2 years. The most popular EIBI program model in Australia is the Lovaas Program from UCLA.

There is universal agreement, well supported by research, that behavioural interventions have produced positive outcomes for children with autism. However, there continues to be a great deal of controversy about particular behavioural interventions and programs, concerns about methodological issues and differences in the interpretation of research findings. IBI/EIBI programs exemplified by the Lovaas program which use ABA and DTT are among the most controversial intervention strategies for children with autism. This controversy revolves around outcome claims, exclusivity, extensive use, and personnel. There is controversy as to whether ABA and DTT can lead to recovery. Controversy related to exclusivity pertains to whether ABA and DTT should be used to the exclusion of all other methods. While 40 hours of weekly DTT has been used, controversy exists regarding the extensive use of DTT and the appropriateness for some children and families.

Picture exchange Communication System (PECS)

PECS is a program that teaches children to interact with others by exchanging pictures, symbols, photographs or real objects for desired items. The goals of PECS include the identification of objects that may serve as stimuli for each child’s actions and the learning of responses to simple questions with multi-picture systems. It is a highly structured program that uses behaviourist principles of stimulus, response and reward to achieve functional communication. There are some studies that have evaluated PECS and show positive gains for participants.

NATURALISTIC/DEVELOPMENTAL APRROACHES

Generally naturalistic interventions follow a developmental approach, which is relationship based and aims to help the child to learn to ‘attend, relate, interact, experience a range of feelings, and, ultimately, think and relate in an organized and logical manner’. Naturalistic interventions are also known as normalised interventions. While this approach is popular, especially with therapists, there is little independent research evaluating outcomes of specific programs to date.

Developmental Social-Pragmatic Model (DSP)

This approach emphasises the importance of initiation and spontaneity in communication, following the child’s attentional focus and motivations, building on the child’s current communicative repertoire even if this is unconventional and using more natural activities and events as contexts to support the development of the child’s communicative abilities.  The DSP approach differs from the contemporary ABA approach in its emphasis on sequences of language development and reduced emphasis on eliciting and measuring discrete trial behavioural responses. DSP focuses on enabling the child to participate in extended interactions with emphasis on enhancing communication abilities within meaningful events and routines.

Relationship Development Intervention

Relationship Development Intervention (RDI) is a series of techniques and strategies built upon the typical developmental processes of social competence. The goal of RDI is to increase motivation and interest in social relating in individuals with autism and provide activities and coaching to assist them to enjoy and become competent in social relationships. The program makes strong claims of positive outcomes which have yet to be substantiated in independent peer-reviewed, published studies.

COMMUNICATION THERAPIES

Visual Supports/Alternative and Augmentative Communication (AAC)

There is considerable research evidence to support the use of visual strategies and visually cued instruction for children with autism. Augmentative systems of communication in autism, are used not just to replace speech, but to assist learning and communication, regardless of the level of speech. Symbols, pictures, photographs and objects of reference, are all well established as helpful for people with autism in supporting the comprehension of what is said and in getting needs met.

Facilitated Communication (FC)

Proponents of FC claim that autism is primarily a motor disorder involving difficulty producing voluntary movement, (apraxia) which precludes the production of speech. Therapy involves teaching communication by physically prompting to form a pointing finger, supporting the hand as a point is made and assisting withdrawal from the point. Extensive research has been done to determine the efficacy of FC for people with autism. No evidence has been found of consistent, useful or spontaneous communication using this method.

SENSORY/MOTOR THERAPIES

Sensory integration

Sensory Integration (SI) therapy is based upon theories that children with autism and other developmental delays experience dysfunction in which sensory input is not integrated or organized appropriately by the brain. Sensory integration is described as providing the child with planned and controlled sensory experiences that aim to produce adaptive and functional responses to sensory stimuli. Current research does not support SI as an effective treatment for children with autism, developmental delays or mental retardation; nor has the limited research to date been able to identify SI as an independent variable responsible for positive change in a child’s behaviours or skills.

Auditory integration training (AIT)

Auditory integration training is said to address the hearing distortions, hyper-acute hearing, and sensory processing anomalies, which cause discomfort and confusion in people with disability, including autism. According to the American Academy of Paediatrics Committee on Children with Disabilities there is insufficient information to support the use of auditory integration training.

COMBINED APPROACHES

TEACCH (Treatment and Education of Autistic and related Communication Handicapped Children)

This approach is one of the most widely used approaches in autism. While it is not available as such in Australia many local programs have adopted TEACCH principles and methods. The major feature of the TEACCH approach is structure. Some of the difficulties in autism, which the TEACCH program identifies and addresses, are organisational difficulties, memory problems, difficulties with auditory processing and making transitions from one activity or topic to another. The environment is organised to help the child or adult understand and remind them what they are to do. The emphasis is on positive strategies of behaviour management and visually, rather than verbally, mediated teaching strategies. Types of intervention include structured teaching, communication training, leisure and social skill development and stress reduction. There is research supporting positive outcomes of the program however there are few studies done by independent researchers.

SUPPORTING FAMILIES

Evidence to support best practice models to assist families at the time of diagnosis is scarce. Factors identified as contributing to the reduction in stress experienced by families when receiving a diagnosis of autism, were identified as: early disclosure of a diagnosis, increased understanding of autistic behaviour, the accumulated experience of how to communicate with their child and the existence of a self-care group to support parents.

Programs designed to support and inform families which are available in Australia include:

• The Hanen Program ‘More Than Words’ is an intensive training program for parents of pre-school children with autism. The program derives its theoretical framework from a social-pragmatic developmental perspective and has some research based evaluation.
  
  
• Preschoolers with Autism: A parent education and skills training programme is a parent-focused model of early intervention developed at the Monash University Centre for Developmental Psychiatry and Psychology. It focuses on the provision of parent training and support for parents soon after their child has been diagnosed with autism. The program was evaluated in an extensive randomised controlled trial and results showed a significant improvement in mental health of parents participating in the intervention and improved social relating skills and adaptive behaviour in their children.

ELEMENTS OF SUCCESSFUL PROGRAMS

Program directors, regardless of philosophical orientation, describe the same key components of a successful program:

• Autism specific curriculum content focusing on attention, compliance, imitation, language and social skills
• Need for highly supportive teaching environments and generalisation strategies
• Need for predictability and routine
• A functional approach to problem behaviours
• Supported transition from the preschool classroom
• Family involvement

CONCLUSION

It is unlikely that one program will suit all children with autism and their families. Research suggests that there are substantial short and long term benefits from early, intensive, family-based treatment programs, whatever their theoretical basis, so long as these are appropriately adapted to the child’s pattern of strengths and weaknesses and take account of family circumstances.

Contact details

Jacqueline Roberts
Disability Initiative
Faculty of Health Sciences
University of Sydney
J.Roberts@fhs.usyd.edu.au