A Clinician’s Perspective on the Communicative Intention in Autism: Call to Reconsider our Understanding of Non-Verbal Behaviours, Private and Inner Speech and Echolalia in Children with Autism Spectrum Disorder
Researchers’ understanding of the meaning of non-verbal behaviours in autism determines, to varying degrees, what practitioners, educators and family members do about these behaviours. There is a lack of consensus in our current understanding of non-verbal behaviours, private and inner speech, and echolalia in children with autism spectrum disorder, as well as a lack of consistency and rigour in terminological use. Even more importantly, there is a lack of rigorous multidimensional lines of evidence to support current views of the meaning of non-verbal behaviours or private and inner speech in autistics. This position paper supports recommendations from a growing number of autism experts for behavioural phenomenological analyses of these complex behaviours, in order to explore the potential communicative intent underlying non-verbal behaviours in children with autism spectrum disorder.
A Service Desert: Unmet Needs of Individuals with Autism and their Families
Megan Galligan, Ainsley Losh, Elina Veytsman and Jan Blacher
Background: Families face substantial barriers to timely assessment and intervention services for their children, particularly in remote areas. This study reports results of a survey in an effort to promote better service options for underserved children with autism spectrum disorder (ASD) and their families in the Inland Empire region of California.
Method: Parents, medical practitioners, and service providers (N = 90) completed surveys of unmet needs. Results were analyzed quantitatively and qualitatively.
Results: Only 13% of participants felt that service/healthcare needs were currently met; specific needs included: (1) increased access to a variety of services, (2) overcoming barriers to treatment and/or evaluation services, and (3) additional training and/or education for medical practitioners and service providers.
Conclusions: There is a critical need for increased access to comprehensive assessment and services. Recommendations include increased practitioner training and the development of comprehensive services such as an autism centre that focuses on research, education, and service in developmental disabilities.
The Experience of Canadian Immigrant Families of Children with Autism Spectrum Disorder
Tian Kuan, Odette Weiss and Adrienne Perry
Previous literature has established that parents of children with autism spectrum disorder (ASD) experience major impacts on the family. However, immigrant parents are often not included in such research and differences between Canadian-born and immigrant parents are unknown. The Perry Model of Stress (Perry, 2004) conceptualizes the experience of parents, positing that stressors (child characteristics and other life stressors), resources (individual personal resources and family system resources), and supports (informal social support and formal supports and services) should be considered in understanding both negative and positive family impacts of raising a child with ASD. Several of these factors might be expected to differ for immigrant families. This study compared positive and negative impacts, stressors, resources and supports, between 65 immigrant and 95 Canadian-born parents of children with ASD. There were no differences in positive or negative impacts overall. However, immigrant parents had significantly higher scores for positive coping, satisfaction with formal services, and informal social supports. Predictors of outcome differed somewhat for the two groups, but higher positive coping significantly predicted greater positive outcomes in both groups. These findings suggest that the experiences of immigrant and Canadian-born parents may be more similar than different.
Inclusive Educational Practices in Childcare Settings: Perspective of Parents of Children with Special Needs
Myriam Rousseau, Suzie McKinnon and Stéphanie Girard
Background. While the benefits of including children with special needs in an educational childcare program are widely recognized for the children, their peers and their parents or caregivers, the approach calls for flexibility. It is also essential to consider the parents' perspective and involve them in their child's inclusion. However, there is little published information on parents' view of childcare, especially as regards children with special needs. The present article helps correct this information gap by documenting parents' perspective on the inclusive educational practices implemented by the educational childcare program in Quebec.
Method. For purposes of this study, relevant information was collected from 76 parents of children with special needs based on a large-scale online Quebec survey. Three research objectives aimed to determine if parents: 1) approved of the adaptation measures implemented in the childcare setting; 2) agreed with the identification of their children’s developmental needs; and 3) agreed that their children’s inclusion experience was a positive one. Descriptive statistics were used to quantify responses.
Results. Seventy-four percent of parents agreed or strongly agreed that their children’s developmental needs had been correctly identified. Sixty percent or more acknowledged that available materials, instructions and individual interventions were adequate, confirming that the childcare setting implemented diverse adaptation measures to meet the specific needs of their children. Finally, parents’ responses indicated that they are involved in their children’s inclusion, with 75% agreeing or strongly agreeing that the inclusion experience in the childcare setting was a positive one.
Conclusion. Although preliminary, this study paints a portrait of certain educational practices in childcare settings attended by children with disabilities. Our findings highlight the importance of individualized practices and parental involvement to improve the inclusion experience for children with special needs in Quebec childcare settings.
Autism Summer Employment Program: An Evaluation of a Community-Based Pilot Program
Alex Porthukaran, Iris Yusupov, Magali Segers, Sheila Konanur, Busi Ncube and James Bebko
Background: The Autism (formerly Asperger) Summer Employment Program (ASEP) was a community-based pilot program designed to provide summer vocational support to autistic university and college students. The ASEP was the initiative of community agencies interested in identifying service gaps for autistic adults during transition periods, such as entering the workforce following post-secondary education. The current study reports on a program evaluation of the ASEP developed by a community agency in Toronto in which two workforce specialists provided ongoing training and support for 17 autistic adults over a four-month summer period. Twelve participants obtained paid employment, three obtained volunteer positions, and two were unsuccessful in obtaining summer placements.
Methods: Evaluation of the ASEP was based on responses to a questionnaire by participants and reports from employers. Participants completed questionnaires before and after the program, while employers completed questionnaires at the end of the program.
Results: Self-rated autism symptom severity was high and correlated with some self-reported job-related knowledge and skills. Participants reported a significant increase in their job-related knowledge and skills from pre- to post-program. At the conclusion of the program, employers reviewed participant’s job as "good" on average. When asked if participants would be considered for future employment, most employers responded positively, while some had some concerns.
Conclusion: Overall, the results suggest that with appropriate support, successful summer vocational experiences are accessible to autistic students. Clinical implications are discussed.
Are Difficult Behaviours Described in Intellectual and Developmental Disabilities and Autism Actually Adaptive Responses to Feeling Unsafe?
Elspeth Bradley and Marika Korossy
People with intellectual and developmental disabilities (IDD) and autism are often marginalized and further traumatized because of behaviours that are difficult (challenging) for care providers and services to manage. These behaviours are similar in many ways to responses of our autonomic nervous system when triggered by danger and life threat – namely fight-flight-freeze (FFF) and shutdown survival responses. This discussion paper, drawing on polyvagal theory understanding, explores these similarities further from Outside-In (i.e., as observed and reported by others such as carers and clinicians) and Inside-Out perspectives (i.e., as described by people with IDD and autism engaging in these behaviours). Polyvagal theory, developed by Dr. Stephen Porges, explains how the sympathetic nervous system and the dorsal branches of the vagus nerve are involved in FFF and shutdown survival responses; the ventral branches of the vagus nerve are involved in the capacity for social engagement and in the experience of feeling safe. In our paper, the experience of feeling safe is investigated and triggers that alert the nervous system to danger and threat are identified. Being safe and feeling safe diminishes autonomic nervous system reactivity and automatic survival responses. We conclude that imbuing a safe experience for people with IDD and autism (from their perspective), through optimal health and supportive emotional and physical environments adapted to unique needs, will diminish autonomic nervous system reactivity and dysregulation, which in turn will diminish consequent distress behaviours that services and care providers find difficult. Being safe and feeling safe, are key to both treatment and prevention of emotional and behavioural distress and difficult behaviours.