Early Intervention Priorities Identified by Parents of Children with Autism Deb Keen, Sylvia Rodger, Michelle Braithwaite, Anne Jobling University of Queensland Parents can often feel overwhelmed by the many needs they feel their child has and it can be difficult to prioritize these and set goals for intervention

Outline Modified version of the Canadian Occupational Performance Measure (M-COPM) Study with 22 families Research finding and implications In this presentation I will outline a process that was used to assist parents of young children with ASD to identify and prioritise their goals for their children’s early intervention. I will Describe a modified version of the Canadian Occupational Performance Measure (M-COPM) that we used to facilitate this process Show how this was used with 22 families who participated in an family-centred early intervention program Report on results from this research and consider implications of the findings for early intervention with families.

Participants 22 children with autism or early signs of the disorder Screened using the M-CHAT Aged 2-4 years (mean age 3y3m) 5 females and 17 males Parents were participating in an early intervention program run by the University M-CHAT (Modified Checklist for Autism in Toddlers)

M-COPM COPM – Law et al. (1990, 1998) and Pollock et al. (1999) Performance and satisfaction ratings Clinically significant change = 2-3 points Modifications – communication and behaviour Modified Canadian Occupational Performance Measure (M-COPM) The COPM was developed in the early 1990s by Law, Pollock, and colleagues, as an individualised outcome measure designed to assist occupational therapists and clients to clearly identify occupational performance issues. The COPM is used to document the client’s self-rating of performance and satisfaction in the areas of occupational performance: self-care, productivity/work, leisure/play, and rest and relaxation, before and after intervention The COPM also serves to structure and focus the occupational therapy assessment and intervention process around client identified goals. When used as an outcome measure, pre- and post-performance and satisfaction ratings and change scores can be determined. A change score of 2-3 points is considered indicative of clinically significant change (Law et al., 1998) To date, there has been some use of the COPM with children (aged over 7 years) (Miller, Missiuna, Macnab, Malloy-Miller, & Polatajko, 2001; Polatajko, Mandich, Miller, & Macnab, 2001), however limited use with families has been reported in the literature. For the present study, two modifications were made to the COPM. First, we reframed occupations as the things children need to do, want to do and are expected to do in their daily lives. Second, we substituted ‘Communication/Behaviour’ in place of the occupational area ‘Productivity/Work’ as children from 2-4 years do not engage in formal school activities. Communication and behaviour were chosen as these are core impairments to the disorder of autism. Parents were asked to consider how their child’s communication and behaviour difficulties impacted on their child’s ability to engage in their daily occupations. Parents were asked to reflect on a typical day for their child and then guided to think about potential areas of difficulty experienced by their child such as communication, behaviour, play, leisure, self-care, rest, and relaxation.

Procedure Early intervention program: workshop + home visits M-COPM administered pre and post home visits Goals assigned to 1 of 5 domains Inter-rater reliability calculated Mean scores for performance and satisfaction ratings calculated Parents participated in a family-centred early intervention program designed to provide information and to help parents achieve their goals for their child. It involved a two-day workshop for parents followed by ten home-visits, provided twice a week over five weeks by a home facilitator. The M-COPM was administered during the first visit following the 2-day workshop. The second, post-intervention administration occurred within two weeks of the completion of the home visits. Administration of the M-COPM involved four steps: (a) parents were asked to identify occupations that were difficult for their son/daughter in self-care, productivity, leisure, rest and relaxation; (b) parents then rated these difficulties using a ten point scale to identify priorities for intervention, where 10 represented “the most important” priority; (c) parents then rated current performance and satisfaction of their son/daughter on three to five of the priority areas using a ten-point scale for both performance and satisfaction; and finally (d) parents rated performance and satisfaction post intervention. On the ten point scales for performance and satisfaction a rating of ‘1’ represented ‘Not able to do’, ‘Not satisfied at all’ and ‘10’ represented ‘Able to do it extremely well’, ‘Extremely satisfied’. The goals identified for each child from the M-COPM conducted with his/her parents were examined by two independent raters and domains identified. All 90 goals that had been identifited by parents were then assigned to one of the following five domains: communication, social interaction, behaviour, play, and self-care. Good interrater reliability (>90%) except for social interaction (69%). The mean pre and post intervention performance and satisfaction ratings for the M-COPM for each goal domain for all children were calculated.

M-COPM and Parent Goals Domain Classification Examples of Goals Communication To ask before going to the fridge To increase ability to make needs known To communicate need for toilet Social Interaction To improve eye contact To share and take turns with sibling To improve tolerance of others engaging in play. Behaviour To express frustration in appropriate ways To reduce the frequency of unusual behaviour To sit down for snack time at kindy To stay beside parents when walking in open spaces. Play Play alongside Will calmly To engage in functional play with a doll To increase play skills with other children Self-care To sit on toilet for 5 minutes. To establish a regular toilet routine Parents identified between three and six goals for their children. The mean number of goals was 4.09. Table provides some examples.

Parent Goals The domains most frequently identified by parents were communication, followed by behaviour, social interaction, play and self-care. Communication - requesting, enabling children to get their basic needs met, and following basic instructions Behaviour - minimising inappropriate and unusual behaviours, self-stimulation, tantrums, frustration, and safety issues Social interaction - joining in, sharing and taking turns, increasing eye contact and joint attention Play - independently playing on their own, playing alongside and with other friends, and extending the child’s play repertoire Self-care - toileting, grooming and eating routines

Pre and post intervention mean scores for performance and satisfaction in each domain are shown on this graph. For all goal domains post performance and satisfaction scores were higher than pre intervention scores. With the exception of play (where mean change scores were 1.4 and 1.5), mean change for the other four domains ranged from 2 to 3.2 points (indicating clinically significant change) (Law et al, 1998).

Summary of Findings Goals reflect core impairments M-COPM clinically useful Pre-requisites for use of M-COPM Summary of findings Parents’ goals tended to reflect the core impairments of autism. The M-COPM was clinically useful, enabling facilitators to assist parents to reflect upon their children’s occupations and consider the difficulties they experience with their daily activities. The modifications that enabled this reflection appear to have been successful in assisting this process. Important pre-requisites in utilising the M-COPM include the establishment of rapport with parents prior to the interview, finding a mutually convenient time for interview, ensuring that the interviewer embodies the underpinning philosophies of family centred practice and has developed excellent listening and interviewing skills.

Implications Increased practice of new learning across settings Generalisation of skills and behaviour Facilitate communication between parents and professionals Establish shared goals and realistic expectations The involvement of family and professionals in all of the contexts in which the child engages is recognised as one of the key components of effective programs for young children with autism (Dawson & Osterling, 1997). In addition, consistency of management assists with the generalisation of skills and development of new behaviours across multiple settings, a factor known to be critical for these children (Drasgow et al., 2001). Goal setting and prioritisation of goals with families can provide a useful process for promoting consistency and generalisation of learning and behaviour management across settings and encourages shared goals and commitment by key stakeholders. May also facilitate communication between parents and professionals in helping to clarify parental expectations concerning their child’s education and care. This may improve the ‘fit’ between the values and goals of the family and that of the child-care or educational centre. Deal with what may or may not be realistic etc.

Conclusions M-COPM useful tool Extend research to other families Training video package coming soon 1. The M-COPM appears to be a useful tool to enable parents to identify and prioritise early intervention goals for their children with ASD. 2. Provides a means of documenting outcomes of intervention by way of addressing parental perceptions of change in both the child’s performance in relation to specific goals as well as their satisfaction with that performance. 3. Families in this study may not be representative – Parents tended to be middle to upper-middle class, generally well educated, and were married or in permanent relationships. On the whole their level of education was higher than the general Australian population, and their occupations fell within the two highest occupational groupings on the Australian Standard Classification of Occupations (Najman & Brampton, 1991). Further research is needed into use of M-COPM with parents from wider social, cultural, economic and educational backgrounds.