What is the AID?
The AID is a free portal allowing access to over 1,000 autism and special needs related resources, sourced internationally. ACT has created a keyword searchable record for each resource. The purpose of the AID is to provide families, and the professionals who support them, with practical, evidence-informed resources, in multiple languages, including research targeted at community-level users. www.actcommunity.ca/aid-search/ Each record contains an alert button so users can inform ACT of any concern with a resource.
Why has the AID been Developed?
The AID Search Tool offers an alternative to the 60 million hits families receive from a Google Search for ‘Autism Treatment’. Users can do a key-word search of evidence-informed information resources, sourced primarily from websites internationally, providing the autism community with a curated source of high quality information resources. The over 1,000 information records in the AID currently have been carefully screened to provide families with links useful to parenting a child with ASD, saving stressed families valuable time and money, protecting novice families from inflated and sometimes dangerous treatments, while building their confidence in how to assess efficacy claims.
What Types of Topics are Covered by the AID?
The AID links to multiple resources on: diagnosis, treatment, toilet training, sleep, ABA, Positive Behavior Supports, social skills, mental health, employment, including websites and online videos. In recognition that many families need resources in languages other than English, ACT includes resources in multiple languages, increasing international relevance.
Are There Other Portals like the AID?
ACT has a number of features which, taken together, are not replicated elsewhere including:
- A key word searchable database
- A focus on the information needs of families and adults with ASD; the AID is not a listing of service providers or programs
- Resources in multiple languages where available
- Linked to the original publicly accessible resource – ACT has no ownership of these resources except for those developed by ACT
- Sites are assessed for their information value, those that are primarily commercial will not normally be included unless they contain high quality free resources
Who Can Suggest Resources to be Linked to the AID?
Individuals, community organizations, researchers and service providers are welcomed to share their favourite resources with users across Canada and around the world by using the AID submission tool: www.actcommunity.ca/submitir/
How Are Potential AID Resources Assessed?
There are many factors considered when assessing an information resource for inclusion in the AID:
- Is it aimed at primarily at community-level users as opposed to clinicians and researchers?
- Is it evidence-informed or, at a minimum, not harmful?
- Is it of practical use to building family awareness, knowledge and skills?
- Is it a positive resource for adults with autism or those who support them?
- Is there a better resource already on the AID?
Who Manages the AID
ACT – Autism Community Training, a Canadian registered charity, has been developing the Autism Information Database (AID) search tool since 2012. The latest version of the AID focuses on information resources, sourced internationally. The AID is informed by ACT’s experience of the diverse information needs of families and adults with ASD, which are remarkably similar internationally, thus supporting a portal from which international resources can be searched.
Oversight of the AID – the Role of the International Advisory Panel
Traditionally ACT has depended on the many researchers that it collaborates with to inform the resources included on the AID. Dr. Grace Iarocci of Simon Fraser University is a strong partner in this process. ACT is now enlisting an international panel of autism specialists to provide a more formal process of oversight of resources included in the AID. ACT will refer questionable submissions for inclusion to the AID to an appropriate member of the AID Advisory Panel. Involvement of researchers, clinicians and parent advocates from across Canada internationally will also encourage the sourcing of relevant resources, which are often buried in websites that few people are aware of, and the culling of out-dated resources.
ACT has enlisted an international panel of autism specialists to provide a more formal process of oversight of resources included in the AID. ACT will refer questionable submissions for inclusion in the AID to an appropriate member of the AID Advisory Panel. Involvement of researchers, clinicians and parent advocates from across Canada, and internationally, will also encourage the sourcing of relevant resources, which are often buried in websites that merit more attention, and the culling of out-dated resources when more current resources are available.
Members of the AID International Advisory Panel
Anthony Bailey, BSc, MBBS, DCH, MRCPsych, FRCPC, Professor and Chair of Child and Adolescent Psychiatry, Institute of Mental Health Chair, Department of Psychiatry, Faculty of Medicine, University of British Columbia, Canada. Dr. Bailey’s research interests focus on the neurobiological basis of autistic disorders and strategies to improve quality of life in adults. Dr. Bailey’s clinical work focuses on teenagers and able adults with ASD.
Vikram Dua, MD, FRCPC, Psychiatrist-in-Chief at Surrey Place Centre, and Assistant Professor, Department of Psychiatry, University of Toronto, Canada. His clinical and research interests are with complex children, youth and young adults with autism and developmental disabilities – “dual diagnosis”, and systems of care that partner with community providers to improved community access to evidence-based treatments, and efficient use of expert resources.
Christopher Gillberg MD, PhD, Professor of Child and Adolescent Psychiatry at the University of Gothenburg, Sweden where he heads the Gillberg Neuropsychiatry Centre.His research interests include ASD, ADHD, Tourette syndrome, intellectual disability, epilepsy, behavioural phenotype syndromes, depression, reactive attachment disorder and anorexia nervosa, ranging from genetics and basic neuroscience through epidemiology and clinical phenomenology to treatments/interventions and outcome.
Mayada Elsabbagh, Ph.D. is Assistant Professor in Psychiatry at McGill University. Her research focuses on understanding the root causes of autism and tracing its developmental pathways. The approach integrates innovative research with the mission of accelerating translation of scientific discoveries into community impact. Mayada is the Director of the Transforming Autism Care Consortium, a province-wide Research Network in Quebec. She has contributed to mapping knowledge translation priorities in under-resourced communities. She is the Chair of the International Society for Autism Research Committee for Special Interest Groups. In 2010, she was awarded the Neville Butler Memorial Prize, in recognition of the public value and social relevance of her research. In 2013, she was the recipient of the British Psychological Society Neil O’Conner Prize, awarded for her work in early autism biomarkers.
Grace Iarocci, PhD, RPsych, Professor of Psychology at Simon Fraser University, Canada and Director of the Autism and Developmental Disorders Lab. Dr. Iarocci’s research interests include family quality of life and resilience in the context of symptom severity, additional mental health conditions and social competence. Dr. Iarocci is also a practicing psychologist in British Columbia who specializes in assessment, diagnosis and interventions for children and adults with ASD.
Beth Ann Malow, MD, Professor of Neurology,Vanderbilt University Medical Centre; Burry Chair in Cognitive Childhood Development, Director of Vanderbilt’s Sleep Division and Sleep Research Core, and Principal Investigator (PI) for Vanderbilt’s Autism Speaks Autism Treatment Network.Dr. Malow is the co-author of Solving Sleep Problems in Children with Autism Spectrum Disorders – a Guide for Frazzled Parents.
Mary Ellen Ross, Phd, Dr. Ross is a former professor of French Literature at the University of Victoria and the parent of two sons with autism. She has an active interest in the interface between research and community awareness of best practices in autism intervention, while maintaining a respect for the individuality of children and adults with autism.
Isabel Smith, PhD, Craig Chair in Autism Research at Dalhousie University, Canada. A Clinical-Developmental Psychologist, she is a Professor in the Departments of Pediatrics and Psychology & Neuroscience. Dr. Smith has promoted evidence-based practices for identification, diagnosis, and treatment of ASD for many years through research and advocacy, as well as by providing professional development and peer consultation. Her current research focus is on evaluation of the effectiveness and cost-effectiveness of early interventions to improve children’s and families’ well-being.
Jonathan Weiss PhD, CPsych, Canadian Institute of Health Research Chair in ASD Treatment and Care Research; Associate Professor, York University. Dr. Weiss’ research focuses on the prevention and treatment of mental health problems in people with ASD and/or intellectual disabilities across the lifespan. He is interested in their health service needs, their emergency service use, and their experiences of psychiatric crisis.
How will this project build capacity and inform evidence-based service delivery?
The AID’s focus on quality information resources recognizes that families are the key decision-makers in autism treatment, but to take on this role properly they require access to comprehensive sources of evidence-based information that recognize the complexity of life for families of children with ASD. In many countries, including Canada, the provincial silos of education, health and social services do not support integrated information resources that meet family needs. By developing and promoting the AID platform, ACT’s intent is to support the building of the capacity of families, by encouraging “connoisseurship” of good practice as families learn to critically assess efficacy claims and ignore those that are both costly and/or ineffective. The AID also includes resources for adults with autism.
Increasing Access to the AID Portal
Over the next year ACT will upgrade the platform that the supports the AID search tool. The goal is to allow any Canadian or international not-for-profit to host the search bar on their site – to increase accessibility.
For More Information
If you have questions about the AID, contact Deborah Pugh, ACT’s Executive Director, firstname.lastname@example.org.