A research paper published in the Journal on Developmental Disabilities in 2005 titled "Sources of Information and Support used by Parents of Children with Autism Spectrum Disorders" identified the complexity parents face in determining how best to meet the needs of their child. With the explosion of information and resources available on the internet, the task has become even more difficult. The authors, Virginia Mackintosh, Barbara J Myers and Robin P Goin-Kochel, found, not surprisingly, that parents relied on other parents for their prime source of information. While there is a great deal of evidence based information which was scientifically robust, they are not necessarily available to everyone or easy to understand. The parents surveyed in this study were predominately from the USA (about 77%) however Canada, Australia and New Zealand were represented in the survey. They found that parents typically had around 5 different sources of support and the top ranking support, nearly 70% was 'other parents of children with ASD'. The question identified by the authors, that is still unanswered, was the degree to which the information parents receive is accurate and helpful.
My thoughts around sources of information for parents is that it needs to be about real life experiences, as well as evidenced based research. There are a number of differences between the two, an important one is how each experience might apply to others, in other words can the experience be repeated with the same success over and over again. The evidence based research seeks to understand a large representative sample of the population and explains the findings in that context, whereas a parent's experience is exactly that, whether it can be applied to more people cannot be ascertained, it's up to the individual to decide for themselves.
I'm in the middle of my own research and my topic will look at how an online community can innovate in any area of ASD, whether it be support through milestones in the life of children on the autism spectrum, or strategies in dealing with life's daily challenges. So far in my reading I found that in order to come up with innovative ideas a community needs to share knowledge. I say community because ASD crosses many different health professionals as well as many different people. I want to kick off a community that collectively shares experiences and knowledge online for others to comment, discuss and question matters relating to ASD. There are a number already out there, however this would be different in that the aim is to contribute knowledge so we can innovate and find better ways of addressing the challenges. The key differences would also include:
- Trusted - Ladybug House would ensure that we only have genuine community members, registration will require, among others things, proof of ID.
- Accuracy and helpful - We'll do our best to put our shared knowledge into context and make sure that if you are going to try something that you know the risks.
- A sense of community - think of a country town where everyone shows respect for each others' opinions.
- Access - there will be access to practitioners, to ask their opinion or comment on a topic, as well as sourcing evidence based research from the science community
- Innovation - where the community agrees we will push for the knowledge to be researched by the academic community and make it explicit.
If you are interested in participating please 'like' this post on facebook or the webpage and if we achieve 100 likes, I'll be in touch and kick off the first phase.