What those with FASD want

1. What those with FASD would like from Guest blog: Adults with FASD – Priorities for Research JULY 3, 2019 BY CANFASDBLOG Research led by adults with FASD, such as the health survey completed by Myles Himmelreich, C.J. Lutke and Emily Travis. They could make sure that the research information would get into the hands of people with FASD in a way that they can understand. More about genetic testing, and if it was possible to create a test that could bypass the requirement for confirmation of prenatal alcohol exposure. Research that could identify an “FASD profile” which could be used diagnostically. Research that identified how many individuals with other disabilities may actually have FASD. Research to assess the level of knowledge of FASD in various professions, specifically doctors, educators and people working in the Justice system. Research about effective interventions: what works in the areas of employment, addictions, education, mental and physical health. More longitudinal studies, because, as a lifelong disability, FASD looks different depending on the age of the individual. Research on FASD and aging with particular attention to FASD. Research on the effectiveness of job coaching and peer mentoring programs.

2. Research based on the individual, rather than on groups. For example, single case studies that followed an individual over time to see what works. Research using the point of view of the individual and their experience through life. Research to help explain the wide range of individual differences in people with FASD. Research into the variability within an individual and needed help understanding why they could do something one day and not be able to do it the next. Research to support their experiential wisdom to help them show educators and employers how to accommodate their needs. Research into why sensory overload occurs more often in individuals with FASD, and once we know why, then what interventions would be effective for an individual experiencing sensory overload. Research into effective communication strategies for people with FASD. Research into the use of medications for people with FASD. Research into Effective addictions treatment strategies for individuals with FASD. Research evidence to support their knowledge and assist in changing policy and service provision.