This health survey was developed by 3 adults with FASD, [Myles Himmelreich, CJ Lutke , Emily Travis]and has been approved by Ed Riley and Joanne Weinberg who have gone over it with them several times to get everything in order. The results will be presented by the three adults in a plenary session at the Vancouver FASD conference in April (7th National Biennial Conference on Adolescents and Adults with FASD – Research on Adolescents and Adults: If Not Now, When?). There will be a panel of researchers following them who will reply to the findings. The survey is pretty comprehensive, and Ed feels this will be the very first time anyone has tried to gather this kind of data. It actually came about as a result of a large group of adults with FASD getting together at the last adult conference and comparing notes on physical health issues….and finding that many of them, who had not known each other before, had many of the same problems. It may well help to shape research directions as so very many have or are developing significant health problems as they become adults, and at ages much younger than would be expected, and they need to be addressed.
The survey is completely anonymous and has been designed with software that allows multiple responses from the same computer, so that those who do not have one can use one from someone else (ie: multiple replies from one computer).
It is suggested that parents could probably do this survey for adult kids they know well, especially for those who are not able to do this type of survey. Since the survey does not track ANYTHING like IP addresses, emails, etc. they can rest assured no one will know who they are. The whole reason this conference focus is research is that the adults have been telling us that we need to pay attention to them – that they do not “stop” at 18 – and that there is more to their lives and this disability than just “brain”. Here is the link to the survey:
Hope you can help. This can go out absolutely anywhere and to anyone who can access adults. The more replies to this that are obtained, the greater the impact on researchers. The survey software handles all the collation of results, etc., so a large number of responses is not an issue. We haven’t given a deadline for replies, but obviously, the sooner we get them, the better before the end of January.