Promising Practice Profiles

Building Blocks

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Project practice

An early intervention program for children with autism and their families

Project undertaken by

Autism Spectrum (Australia)

Start date

2005

End date

2007

Focal areas

Program

Invest to Grow (ItG)

Issue

The reported incidence of autism spectrum disorders is increasing internationally. Current prevalence figures for Australia suggest that one child in every 160 children has an autism spectrum disorder. This project arose from need identified by parent groups, service providers and community leaders in the Far North Coast region of NSW, for specialist services for children with autism and their families. An independent community consultation with all the stakeholders confirmed unmet need and service gaps, particularly the need for autism-specific early intervention services, and support for parents/carers and local service providers.

Program context

The Far North Coast Centre for Autism at Alstonville (Aspect) provides information, resources and training to the FNC area with the goal of raising awareness of autism in the region and improving community capacity by means of:

Autism Spectrum Australia (Aspect) set up the Starting Blocks™ program in the NSW Far North Coast area in early 2005. The Starting Blocks™ program aimed to assess children with autism and to develop individualised interventions based on need. The program also aimed to support and inform families and parents by the development of parent skills to enable them to work more effectively with their children. In addition the program goals were to integrate children with autism into preschool and the wider community.

To maximise community capacity to provide quality services for these children and their families the program was set up collaboratively with existing local service providers in five locations across the Far North Coast: Summerland Early Childhood Intervention Service (ECIS) (Lismore); Ballina ECIS; Tweed Valley ECIS; Byron Bay ECIS; and Jumbunna ECIS (Casino).

Practice description

Some of the key practice aspects of the project were:

Holistic

The project was a promising practice because it was holistic, that is, it worked at the level of the child, the family and the community (rather than working with the child in isolation). There is research evidence to suggest that children with autism learn better in natural contexts (i.e., functional skills are developed which do not then require specific generalisation strategies) (Delprato, 2001). Therefore interventions that work with families to enable them to change the way they interact with their children in the context of home and community (e.g., the Hanen Program and Building Blocks) have demonstrated positive outcomes for the communication and social skill development of their child (Roberts & Prior, 2006). The service provider works with the child and the family and other caregivers in the child's daily environment. For example, a child with a severe communication deficit (common in autism) is provided with a visual communication system. This is developed by staff and the child is taught to use it during their weekly sessions. In addition, the family is taught to use the system and supported to introduce it at home. In a similar way, the system is also set up and staff supported to use it with the child in the preschool setting. The child is supported to learn and develop and the family and the community are supported to facilitate the child's development in the most effective "best practice" way (utilising visual spatial cognitive strengths to compensate for poor auditory comprehension).

Multidisciplinary

The project is a promising practice because it is multidisciplinary. A multidisciplinary approach is essential in autism and should include therapists and educators. Teams should also include the family. This is because the needs of children with autism span several disciplines including - but not limited to - education, speech pathology, occupational therapy, psychology and medicine. Inclusion of families is essential because the family is potentially the most significant service provider of all (see above).

The project team comprises staff with backgrounds in health sciences and education who are supported by Aspect multidisciplinary teams, all with experience in autism. This means that project staff have support from Aspect in their professional area (speech pathology and education) and also benefit from transdisciplinary support from the Building Blocks Team and management. In addition the project team works with the complete multidisciplinary range of professionals involved with children with autism and their families in the NSW Far North Coast region.

Autism specific

The project is promising because it provides the opportunity for parents and carers to work with experienced staff on an ongoing basis to learn about autism. The content of the modules is based on current good practice, informed by research and experience. While much of this "good practice" is not exclusive to autism, taken as a whole the program caters to the strengths (e.g., good visual spatial skills) and needs (e.g., poor understanding of speech) of children with autism. The content is set out in the Building Blocks™ manual, which addresses issues such as the difficulty people with autism have in processing two or more streams of information simultaneously.

Practical application and applied learning

The project is promising because the way it is delivered ensures that parents have the opportunity and encouragement to apply the theory shared with the group in a practical way in their own situation. Parents and carers have the opportunity from week to week to apply the information and return to the group for feedback, discussion and problem solving. Groups are small enough (4-5 sets of parents) to accommodate families with differing strengths and needs.

Builds resilience and self sufficiency

The project is a promising practice because it builds family and community resilience and independence in relation to autism. The program fosters self-sufficiency in families and communities, that is, the program goals include providing families and the community with accurate up-to-date information to inform their decision making both in relation to their child and in relation to accessing services and with confidence in their own ability to manage and enjoy their child. Self-sufficiency is also fostered through the provision of support for families and the development of resilience. In addition to increased ability to apply knowledge gained to their own situation and problem solve, parents are encouraged to develop ongoing support networks amongst themselves and understand what support is available and where it can be accessed (e.g., through the Far North Coast Autism Resource Centre).

Supports families

The project is a promising practice because the program for families focuses on group work in addition to content (information). The program recognises that parents need to be able to apply their knowledge to issues that arise for them throughout their child's life. A critical role for the facilitator is to build relationships and trust with and between parents in the group. This process takes time however. The result is that parents have time to reflect on their children and their situation in a context where they feel safe and can say what they think without being judged by others. Parents work together to problem-solve and in the process support each other as well as increasing their own skills. Support is provided to families to build networks with other parents and carers of children with autism.

Families are supported to form networks with each other to develop social support networks. The objective is to reduce family feelings of isolation as well as shared problem solving and skill sharing. Group work with small groups of families is designed to improve long term self sufficiency of families and to facilitate the building of relationships between child, family and community contexts. The parent program is also designed to support the whole family and may be attended by parents and other family members.

Regular group sessions

The program includes weekly parent and child group sessions for 12 months. The weekly sessions are structured play-based pre-school programs for six children with autism. Sessions focus on key areas of development and aim to prepare children for inclusive early-childhood settings. In addition, to meet the needs of families, there is a concurrent parent training and support group to provide families with practical skills and information tailored specifically to their individual needs.

In addition to regular group sessions several types of group workshops were offered for parents of children with autism by the centre in 2006. These included:

Information provision

Objectives of the program specific to families include the provision of support by increasing parent/carer knowledge and skills about early child health and development, especially in relation to autism and locally available services.

The program covers a range of topics:

Availability of learning resources for families

A lending library of autism resources - books, DVDs videos research journals and information packages - has been set up at the FNC at Alstonville. In 2006, staff at the centre provided services to 145 library members the majority of whom are parents

The program seeks to increase parental confidence in their capacity to manage their child in all aspects of daily life. Objectives for families include the provision of information for families about services in the region and the most effective ways and means to access services and support from a range of agencies.

Parent mentoring and support program

The AspectSomeone To Turn To program was offered by the Far North Coast Centre for Autism in 2006. The program is a parent to parent mentoring program which involves identifying and providing training and support for parents of children with autism who feel they have something to offer other parents of children with autism, especially those newly diagnosed. Once mentor parents are trained they are matched with families needing mentoring and support. Staff at the Centre trained 21 volunteers who provided mentoring and support for 47 participants during 2006.

Itinerant diagnostic service

An assessment service was provided by Aspect staff from Sydney who saw 21 children and families for diagnostic assessment with an experienced diagnostic team from Aspect in Sydney during 2006. The service was initially funded by an Australian Government Sustainable Regions grant, and subsequently by Invest To Grow and by Aspect fund raising. It was established collaboratively with local health services including private practice, and NSW Department of Health paediatricians. The service was a response to evidence from the community that families often experienced significant delays accessing specialist autism assessments. Referrals to the service could be initiated by local health services or by families directly. Consultation with local health and intervention services prior to and during the assessment process was a key principle, ensuring consistent information, agreed diagnostic outcomes and effective consultation regarding referral to and involvement of local intervention services.

Inclusion of measures to ensure program fidelity

The program included a set of modules covering information for parents about autism set out in a manual for staff running the program. Program fidelity measures were undertaken to ensure that the program was being conducted in a way that complied to the requirements set out in the program manual. Checks of files and observation of sessions by the evaluators indicated that all children and families in the program were receiving a consistent program and that all documentation had been completed and was up to date in the children's files. Measures of program fidelity included observation groups and review of documentation including records of program attendance by the evaluators. Each child was observed during a Starting Blocks™ group and parents were all interviewed. Each child's file was reviewed for documentation by the evaluation team. Files were checked for assessments conducted as part of the program (educational evaluations), evidence that the core curriculum had been covered, key skills areas had been addressed, that each child had an Individual Education Plan in a consistent format with stated target outcomes which had been evaluated. Files were checked to ensure that diagnosis and assessment reports and progress notes were included and that each family had been surveyed to determine their strengths, needs and priorities.

Research base

Good practice guidelines outlined in the research indicate that effective programs for children with autism and their families are:

The Autism Resource Centre at Alstonville and the parent development component of the Starting Blocks Program are informed by the following content:

How children with autism think and learn

Individuals with autism have uneven patterns of cognitive development with relative strengths in visual processing and rote memory and challenges in goal-directed behaviours, abstracting and using information and flexible thinking. This atypical learning style results in difficulties with organising information, skills generalisation and problem solving. Autism is characterised by a tendency to restricted patterns of behaviour and activity. Programming focuses on developing supportive and structured learning environments, assessing learning strengths to assist learning and developing problem solving abilities. Allowing young children with autism to initially participate in activities around their areas of strengths and interests may develop trust and facilitate positive learning outcomes. In older children special skills or interests may be developed as leisure or future vocational options. (Adapted from Aspect's Comprehensive Educational Approach, 2007)

Strategies and techniques for developing social and communication skills

Overwhelming research evidence indicates atypical social development as the most defining aspect of autism from early in life. The Starting Blocks™ program is informed by careful assessment of individual needs and transactional supports. Areas addressed may include recognition and expression of emotions, sharing attention, early interaction, play, social understanding, peer interaction, self-regulation and perspective taking. Program staff utilise a range of interventions including play, cognitive strategies, peer support, using strengths & interests. In autism communication is characterised by atypical semantics (meanings), pragmatics (social use) and para-verbal communication (facial expression, gesture and voice tone). To foster comprehension those interacting with children with autism need to adjust their communication style, using modified facial expression or gesture, allowing time for students to process information and the use of clear, concise language. Aspect's approach to assessment and teaching recognises the range of communicative competencies; from individuals with little or no verbal communication to those who are highly verbal yet experience problems with abstract processing and social communication. A range of assessments and interventions are utilised to develop comprehension, expression and pragmatics (adapted from Aspect's Comprehensive Educational Approach, 2007).

Sensory processing issues

Clinical and biographical reports describe atypical patterns of sensory processing, including hypo/hyper sensory responses/sensitivities and problems with filtering sensory input. Survey research has confirmed the elevated levels of atypical sensory responses in children with autism in comparison with their typically developing peers. Program priorities include identification, assessment and remediation of sensory challenges, supported by occupational therapy as necessary. Strategies may include environmental modification, visually supported learning, increasing tolerance to sensory stimuli and sensory related activities (adapted from Aspect's Comprehensive Educational Approach, 2007).

Using play as an intervention technique

Play is a complex behaviour that impacts enormously on how well children develop. Through play, children learn many of the skills they require to function socially and communicatively throughout life. In typically developing children most play skills are learned incidentally, however in children with autism play is not a natural activity. Although difficult, children with autism can be taught how to play both functionally and socially across different settings.

Children with autism do play purely for enjoyment but not in the same way as typical children. Their play often reflects their uniqueness, lacks flexibility and imagination, and is often characterised as self stimulatory with a fixation on certain objects or rituals, and by withdrawal and self-isolation. They may develop an interest in a wider range of objects although their play usually remains solitary with social behaviour restricted to on-looking or parallel play. Encouragingly literature has shown that children with autism are capable of learning functional and symbolic play, if they are engaged fully in the learning and the learning is structured in a way that makes it accessible, more akin to their typically developing peers. Stahmer (cited in, Luckett, Bundy, & Roberts, 2007, p. 376) reported that children with autism:

learned to be creative and spontaneous in their play. They developed new play themes not suggested by the experimenter, and could engage in complex symbolic play with novel toys. Overall, the children were quite flexible in their play, and did not appear to mind variation or interruption in their play themes. They made as many unique play actions as did the typical controls. (Adapted from unpublished paper by Martin, 2007 and Luckett et al., 2007)

When and how to implement visual supports

Autism is characterised by weak language skills, in particular problems with auditory comprehension and the functional use and understanding of communication (pragmatics). Autism is also characterised by visual spatial cognitive strengths and planning/organisational problems. As a result children with autism are often able to communicate more effectively in visual modes rather than auditory. Understanding how to provide visually based communication and environmental organisation (visual supports) is a valuable tool for parents and carers. They include body language, natural environmental cues, traditional tools for organising and giving information and specifically designed tools to meet specific needs (e.g., sign language).

First, the child is assessed to determine what level of symbolism he/she can understand and use, what functions he/she uses communication for, and what will be most functional for the child and the family (and the preschool). Priorities are developed and visual supports are then introduced to meet the child's needs for communication and environmental organisation at home, at preschool and in the community (Hodgden, 1995).

Behaviour problems - managing their child's behaviour to reduce the risk of child abuse

It is now generally accepted that problem behaviours in children with autism arise from underlying difficulties with sensory processing, communication and social competence. Evidence of increased levels of anxiety in children with autism reflects the daily challenges in socio-emotional relating, comprehension, communication and learning. Recent research also indicates functioning may be further challenged by the disordered development of emotional regulation (understanding and managing ones own emotions). Aspect supports a positive approach to intervention for problem behaviour. Positive Behaviour Support is underpinned by assessment and interventions that focus on skills development and replacement behaviours rather than simply attempting to eliminate particular problem behaviour (adapted from Aspect's Comprehensive Educational Approach, 2007).

Therapy approaches and interventions

An understanding of the range of interventions developed for children with autism and their families is important for parents. Treatment may include medication and/or alternative and complimentary medical interventions. It is likely to include an educational (learning-based) intervention. The range of programs available include:

In addition it is essential that parents have an understanding of the elements of a good program and know what they should look for in a program (adapted from Roberts & Prior, 2006).

Family strengths and needs

Support at the time of diagnosis

Each parent has a unique reaction to his or her own child's diagnosis. Responses include surprise, devastation, helplessness, and at times affirmation of concerns about their child's development. In a study of the views of mothers on the disclosure of a diagnosis of autism, a number of factors were identified which reduced stress and helped them to accept their children's diagnosis. These included: (a) early assessment and diagnosis; (b) the provision of information about their children's behaviours and strategies to support communication; and (c) and the existence of a parent self-care group which provided information and support (Futagi & Yamamoto, 2002).

Parents' need for information

Parents of children with autism require information to help them to understand their child's diagnosis and to make informed decisions about support services that are available. While the need to provide information to families at the point of diagnosis is paramount, parents also require information in the longer term, including:

Many parents have reported that it is hard to know which interventions to use and that it would be helpful to have information about various approaches stored in one central location. Parents also emphasised the need to provide support and training to siblings and the entire family unit (National Autistic Society, 2006; Pratt 1998).

Family stress

Parents of children with autism experience greater stress than do parents of children with other disabilities and parents of children without a disability. They are at high risk for psychological disorders and relationship breakdown. Stress is often related to the antisocial behaviours displayed by children with autism which may be self-injurious, ritualistic, and obsessive. The level of stress experienced by parents is closely related to the availability of support. Mothers of children with autism are likely to experience greater stress than fathers. Other family members, particularly vulnerable siblings, could be at an increased risk for stress associated with having a brother or sister who has autism. Families report a need for specific programs for siblings of children with autism. Siblings need information and support post diagnosis and ongoing support throughout their development.

Recent studies have explored the experiences of family members of children who have autism and attempted to identify and understand the coping mechanisms displayed by family members who demonstrate increased resilience (e.g., Higgins, Bailey, & Pearce, 2005). The results of these and other studies should be used to inform the development and implementation of support programs for parents and families of children with autism (adapted from Roberts & Prior, 2006).

Outcomes

Evidence of outcomes for families of children enrolled in the Starting Blocks™ program included measures of:

Evidence of outcomes

Community capacity building

Effectiveness is maximised if programs for families with an autistic child commence early and are intensive. In an environment where resources are scarce an effective way to provide intensity of intervention has been demonstrated to be to work with parents and service providers to increase their capacity.

Child development outcomes

Outcome measures regarding the impact of the early intervention program on child development included: The Pragmatics Profile of Everyday Communication Skills in Children (statistically significant improvements in communication skills); the Reynell Developmental Language Scales (close to significance, p <.06),confirming the serious nature of formal language deficit associated with autism and the importance of specialised interventions targeting core language deficits); and Educational Evaluation (Aspect scales, these measured highly significant improvements across a range of development including social interaction, functional communication, self care and adaptive skills).

Data was collected measuring the number and type of contacts made by families with the FNC Resource Centre for Autism. The participation rate in training and in-servicing provided by the Centre was also measured.

There has been a massive increase in community demand since the Centre opened in 2005:

A range of measures was utilised to assess outcomes of the program on families. Each family was interviewed by the evaluation staff to determine history and background information.

Positive change in family functioning

Families were asked to complete several standardised and non-standardised questionnaires. The following independent variables relating to families were measured before and after the intervention; family functioning, family stress levels, autism competence and satisfaction.

The Beach Center Family Quality of Life Scale (Turnbull, Brown, & Turnbull, 2004) - a standardised questionnaire about life events and changes experienced by family members over the past year was administered prior to commencement of the program and at the end of the program to assess family functioning. The assessment asks parents to rate both importance and satisfaction with a range of quality of life indicators (25 items).

Families reported increased capacity for problem solving and for goal development however this seems to be at odds with reports of reduced internal communication. Similarly reports of increased satisfaction with external supports seem to be at odds with reports of less satisfaction with internal family relationships. Increased family resilience (e.g., increased feeling of being supported and able to cope) is reflected in several items. Improved networks and access is also reported which are likely to be a product of the networking support provided by the program and information, not only about autism but about services available and processes for accessing these. The largest change in satisfaction reported by families was in families reporting having friends or others who provide support (36% moved from not satisfied to satisfied or very satisfied). This shift reached statistical significance which indicates a very marked change.

Reduction in family stress levels

The Parenting Stress Index (PSI short form) (Abidin, 1995) - a standardised questionnaire about how families cope with managing and catering for a child with a disability was administered before and after the intervention to measure family stress levels. The results of this assessment are mixed; three parents show a marked increase in score indicating reduced stress levels, three show a marked decrease in scores indicating increased stress levels while two show little change suggesting stress levels remained constant. Movement in scores across three domains was assessed: parent distress score, parent-child dysfunctional interaction score and difficult child score. All reflected the direction and magnitude of the change in the total stress score. Changes were not statistically significant in either direction. Results suggest an inconsistent effect of the program on parent stress levels.

The data were examined for any relationship between responses to the parent perception of competence and parent stress pre and post intervention. No correlations were found in the pre-intervention data. There was a trend for low stress to be associated with high scores for Understanding and Planning but this was not significant. Positive correlations were found in the post intervention data. Significant correlations were found for total parent stress score and parental knowledge of autism (r =.52; p =.046) family issues (r =.61; p =.015), planning (r =.65; p =.009), and Total (r =.56; p =.32) with understanding coming close to significance (r =.50; p =.56). The correlations are all positive indicating that positive scores for knowledge, understanding, family issues and planning are associated with less stress at the post intervention assessment. This contrasts with the finding that there were no relationships prior to the intervention.

The following non-standardised measures of parent competence and resilience and satisfaction with the program were administered before and after the intervention.

Increased family understanding of autism and its management

A Parent Perception Survey (Dodd & Roberts, The University of Sydney, 2005) was administered. Parents were asked to complete a short non-standardised questionnaire designed to assess any change in their understanding of autism and its management. The Parent Perception Questionnaire was scored 1-5 with 1 = strongly agree, 5 = strongly disagree with positive statements (e.g., "I feel confident that I am able to access services for my child").

Parental understanding of their child and confidence in managing him or her, their feeling of being able to cope, their knowledge of autism, family issues and planning ability were measured pre and post intervention was assessed. The results indicated significant change over time for Knowledge of autism and Understanding my child. The direction of change for all sections was positive, that is, parents increased their confidence, coping, knowledge, understanding, improved family issues and planning with the greatest increase in parental understanding of their child (10), knowledge of autism (9), with the least positive change in family issues (6). The overall change as reflected in the total score was positive and statistically significant.

Parents were asked to rate the level of their satisfaction with the Starting Blocks™ program via a Parent Satisfaction Survey. They were asked to complete a short questionnaire designed to assess their level of satisfaction with the program after the intervention. Parents were asked to rate statements about the program relating to parent training, meeting their child's needs, supportiveness of staff, opportunities to provide information about child, inclusion of requirements in goal setting, knowledge and approachability of staff, provision of information about other services.

Responses to parent satisfaction surveys indicated a high level of satisfaction with the program. Three parents indicated they were completely satisfied with the program. All families rated the support given by staff at the highest possible level. Least satisfaction was expressed with the level of involvement parents had in the development of their child's program.

Family to family and family to community supports established

Data collected about family priorities as part of the qualitative internal evaluation showed that families considered access to services including physical access (transport), access to medical services, integration support (access to preschool and community) and positive relationships with service providers (access to services and support) as critically important.

Family perception of competence improved as a result of their participation in the program. However, quality of life outcomes were considered to be mixed. Some aspects such as capacity for problem solving were reported to have improved over the course of the program while there was less satisfaction with internal family relationships.

The following comments are taken from the written feedback surveys completed by Starting Blocks™ parents. Selective comments recorded on feedback forms are cited below.

Outcomes for children and parents:

Increased understanding of child:

Staff:

Information:

General comments regarding the Starting Blocks™ program

For many parents the resulting minimisation of isolation in the groups was a unique and very valuable experience. As the year progressed, parents became increasingly confident and competent at dealing with issues that arose. In all of the 10 groups completed to date, ongoing relationships were maintained by parents with each other:

Project evaluations

An external independent evaluation has been undertaken and the report submitted to FaHCSIA.

Invest to Grow Local Evaluation

Autism Spectrum Australia (Aspect), Building Blocks Early Intervention Service

By: Dr Jacqueline Roberts, Associate Professor, University of Canberra

A copy of the Evaluation Report is available on request.

Project related publications

N/A

References

Abidin, (1995) Parent Stress Index. Psychological Assessment resources, Inc. Florida, USA.

Autism Spectrum Australia (Aspect). (2007). Comprehensive Educational Approach. Sydney: Autism Spectrum Australia.

Delprato, D. J. (2001). Comparisons of discrete trial and normalized behavioral language interventions for young children with autism. Journal of Autism and Developmental Disorders, 31, (3), 315-325,

Dodd, S., Roberts, J.M.A., (2005) Parent Perception on Competence Questionnaire. Personal correspondence. University of Sydney.

Futagi, Y., & Yamamoto, Y. (2002). Disclosure of a diagnosis of childhood autism and parents' acceptance of the disability. Brain & Development, 34(4), 336-342.

Higgins, D. J., Bailey, S., & Pearce, J. (2005). An evaluation of the social impact of an autistic child on family functioning. Autism: The International Journal of Research and Practice, 9, 125-137.

Hodgden, L. A. (1995). Visual strategies for improving communication. Troy, MI: Quirk Roberts Publishing.

Luckett, T., Bundy, A. & Roberts, J. (2007). Do behavioural approaches teach children with autism to play or are they pretending? Autism, 11, (4), 365-388.

Martin, S. (2007). Unpublished paper submitted in partial fulfilment of Masters in Education University of Canberra.

National Autistic Society. (2006). The impact of autism on the family. Retrieved 10 June 2006.

Pratt, C. (1998). Early intervention in Indiana: What do families think? Indiana Resource Center for Autism Reporter, 4(1), 1-9.

Roberts, J. M. A., & Prior, M. (2006). A Review of the research to identify the most effective models of practice in early intervention for children with Autism Spectrum Disorders. Canberra: Australian Government Department of Health and Ageing.

Turnbull, Brown and Turnbull., (2004) Beach Centre Family Quality of Life Scale. Beach Center on Disability. The University of Kansas.

Contact

Anthony Warren
Director, Young Children and Families

PO Box 361
Forestville NSW 2087

Phone (02) 8977 8399

Website

www.autismspectrum.org.au

More information

More information on the Promising Practice Profiles can be found on the Communities and Families Clearinghouse Australia website.