Adrienne Perry, PhD, C. Psych., BCBA
email: perry@yorku.ca
SUMMARY OF RESEARCH:
My professional contributions have been in the autism and developmental disabilities (DD) field in Ontario, specifically in the areas of promoting evidence-based assessment and intervention, improving public policy and service delivery, disseminating research knowledge to the field, and in professional training. My areas of research are thus integrated with my areas of clinical practice, policy work, student and professional training, and professional service. This can be viewed as an equation, around which I will structure my summary:
Child + Family + Intervention -> Outcome
1) Child This area includes research related to the assessment and diagnosis of autism, such as a recent large (n=274) multi-site study (3 sites, including 20% francophone sample) of five diagnostic groups (Autism, PDD-NOS, MR/DD, Delays, and Other) (Perry, Condillac, Freeman, Dunn Geier, & Belair, in press) and a study of the Vineland Adaptive Behavior Scale profiles in a sample of over 1,000 children from the same 3 sites (Dunn Geier, Perry, Penn, & Freeman, in preparation). Another recent Child domain research project examined the Assessment of Basic Learning Abilities (ABLA), a test of simple discriminations (imitation, matching, visual, auditory) necessary for many academic and life skills, used in adults and children with developmental disabilities (Condillac, Perry, & Morris, in preparation).
2) Family My second area of research interest is family stress, coping, and social support. Several previous publications, unpublished evaluation papers, and many conference presentations have focused on program evaluations of family support services (parent groups, sibling groups, behavioural parent training, respite care). Three papers in this Family Domain appeared in a Special Issue on Families of the Journal on Developmental Disabilities. The first (Perry, 2004) is a descriptive paper presenting the theoretical model which guides my research and practice with families of children with developmental disabilities (DD). The second describes the effectiveness of sibling support groups for siblings of children with autism (Smith & Perry, 2004). The last (Perry, Harris, & Minnes, 2004) is an examination of family functioning in a multi-site study including five different disabilities (Down syndrome, Rett syndrome, Fragile (X) syndrome, Autism, and DD of unknown etiology). Another paper under review currently is based on a short-term longitudinal study (3 panels of data collection over a 2-year period) examining community-based respite care and other services designed to support families and prevent out-of-home placement in families of a sample of young children with DD from the Hamilton area (Perry, Condillac, Hundert, & Niccols, submitted). An ongoing family project is entitled, Parents and siblings of children with autism: A longitudinal examination of factors contributing to positive and negative psychosocial outcomes (Perry, Diamond, & Smith, in preparation). We are interested in both positive and negative impacts on family members as well as identifying which individual characteristics, coping strategies, and sources of support may serve as predictors, mediators and/or moderators of positive and negative psychosocial (Perry, Harris, & Flynn, in preparation; Perry, Morris, & Harris, 2004).
3) Intervention The third term in the equation is Intervention. I have conducted, designed, supervised, and evaluated treatment and intervention quite extensively, in particular early behavioural intervention. I have also been involved in researching some of the "miracle" treatments which arise regularly in the autism field, such as facilitated communication (FC) (e.g., Bebko, Perry, & Bryson, 1996; Perry, Bryson, & Bebko, 1998). I was integrally involved with the Ontario government in the design of the (now approximately $100 million per year) early Intensive Behavioural Intervention (IBI) program for children with autism and published an article on the underlying research and background (Perry, 2002). In terms of advancing IBI research (and thereby practice and policy, as well), a current research focus involves the development of the York Measure of Quality of IBI (YMQI) One of the major issues in this field is that intervention is measured only via quantity (e.g., 30 hours per week), yet quality of intervention is clearly very important (Perry, Penn, & Prichard, in press). We have developed a measure and conducted preliminary investigations of its reliability (Prichard, 2005) and validity (Prichard, 2005). The initial version of the measure was evaluated (Penn, Prichard, & Perry, submitted) and subsequently revised somewhat. The YMQI-2 is currently being refined and tested, with a view to eventual dissemination to the field as well as for use in future research projects linking quality of treatment (in addition to other relevant factors) to child outcome. Another current study involves examining the involvement of parents in their child’s IBI program and what factors are related to the nature and amount of their involvement (Solish & Perry, in progress).
4) Outcome Recently, I was involved in a retrospective pre-post evaluation of the Toronto Preschool Autism Service (Freeman, Perry, & Scott, 2005), which indicated that children receiving IBI, though variable in outcome (as expected) roughly doubled their developmental rate. Some children achieved outcomes similar to those in published efficacy studies, even in a community-based effectiveness study. Currently, I am conducting similar studies (on contract to the government) in the other eight preschool autism programs in the province of Ontario. The combined sample from these programs will be considerably larger than any other effectiveness study in the literature. In addition, we are planning a study to address, in a finer-grained way, the progression of skill gains throughout IBI and to explore the possibility of different developmental trajectories in different subgroups (Sullivan & Perry, in progress). Another study currently underway is examining perceptions about the process of children transitioning from IBI programs into the school system, from the perspective of both of those systems (Levy & Perry, in progress).
CURRENT GRANTS HELD:
Holden, J. et al. (Perry one of 10 co-investigators and primary mentors) CIHR Training Grant for transdisciplinary autism research training. $1,560,000
Perry, A. (2002). Parents and siblings of children with autism: An examination of factors contributing to positive and negative psychosocial outcomes. Funded by the Social Sciences and Humanities Research Council of Canada (SSHRC). $3000
Perry, A. (2002). Parents and siblings of children with autism: An examination of factors contributing to positive and negative psychosocial outcomes. Funded by the Faculty of Arts Research Grants (FARG), York University. $4,000
Hundert, J., Niccols, A., Perry, A., Mahoney, W., & Chambers, G. (1997). Early intervention to maintain children with developmental disabilities with their family. Funded by the Scottish Rite Foundation. $105,000
Various Research Contracts from Ontario Government Ministry of Children and Youth Services and Surrey Place Centre.
PEOPLE WHO WORK IN HER LAB:
* supported through STIHR Training Grant
^ RA for Provincial IBI Study
Graduate Students: April Sullivan* ^
Susan Lambert
Tracey McMullen
Helen E. Penn* ^
E. Alice Prichard* ^
Abbie Solish* ^
Alissa Levy* ^
Undergraduate Students:
Candace Levert
Jacky Ragolia
Sandy Parks
Kate Sheese
Clinical Trainee (Doctoral Practicum): Kerry Wells* ^
RELEVANT PUBLICATIONS:
Perry, A., Condillac, R.A., Freeman, N.L., Dunn Geier, J., & Belair, J. (in press). Multi-site study of the Childhood Autism Rating Scale (CARS) in five clinical groups of young children. Journal of Autism and Developmental Disorders.
Perry, A., Prichard, E.A., & Penn, H.E. (in press). Indicators of quality teaching in Intensive Behavioral Intervention: A survey of parents and professionals. Behavioral Interventions.
Perry, A., Dunlap, G., & Black, A. (in press). Autism and related disorders. In I. Brown & M. Percy (Eds.). Intellectual and Developmental Disabilities. Baltimore, MD: Paul H. Brookes, to be published 2005.
Perry, A. & Weiss, J.A. (in press). Evidence-based practice in developmental disabilities: What is it and why does it matter? Journal on Developmental Disabilities.
Perry, A. (2004). A model of stress in families of children with developmental disabilities: Clinical and research applications. Journal on Developmental Disabilities, Special Issue: Families, 11(1), 1-16.
Perry, A., Harris, K., & Minnes, P. (2004). Family environments and family harmony: A comparison across severity, age, and type of Developmental Disability. Journal on Developmental Disabilities, Special Issue: Families, 11(1), 17-29.
Smith, T.L., & Perry, A. (2004). A sibling support group for brothers and sisters of children with autism. Journal on Developmental Disabilities, Special Issue: Families, 11(1), 77-88.
Perry, A. & Condillac, R.A. (2003). Evidence-based practices for children and adolescents with Autism Spectrum Disorders: Review of the literature and practice guide. Toronto: Children's Mental Health Ontario.
Perry, A. (2002). Intensive early intervention program for children with autism: Background and design of the Ontario preschool autism initiative. Journal on Developmental Disabilities, 9(2), 121-128.
Perry, A., Condillac, R.A., & Freeman, N.L. (2002). Best practices and practical strategies in the assessment/diagnosis of autism. Journal on Developmental Disabilities, 9(2), 61-75.
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