Guest blog: Adults with FASD – Priorities for Research

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Submitted by: Lisa Brownstone (left), Director, CanFASD Research Network, and Dorothy Reid (right), Co-chair, Family Advisory Committee.

Dorothy Reid is the Co-Chair of the CanFASD Family Advisory Committee. She is also the owner of Reid Wellness Consulting, providing consultation and training to individuals and organizations on maintaining wellness. Dorothy previously worked with the Correctional System primarily in the area of mental health service development and delivery. She has extensive professional experience in working with individuals with FASD and other mental health concerns, and she has developed interventions for offenders with cognitive deficits. After obtaining a diagnosis of FASD for their two sons, Dorothy and her husband have been involved in the development of support groups for parent and caregivers of children with disabilities.

Dorothy can be reached at reidwellness@gmail.com.

Lisa Brownstone is a retired Occupational Therapist living in Regina Saskatchewan. She has Master’s degree in Community Health and Epidemiology. Her particular areas of focus include social policy and community development, program evaluation and research, as well as Occupational Therapy. Brownstone has received a number awards for her work over the years, including the YWCA’s 2008 Woman of Distinction Award in the area of Wellness, Recreation and Healthy Living. She has a long history of working with people who have a FASD. This includes assessments and interventions for people with concurrent disorders such as a FASD, intellectual disability, childhood trauma and mental health illnesses. She has authored studies exploring homelessness and adults with FASD, developed an FASD mentoring program, conducted evaluations of FASD support programs and provided occupational therapy services for people with FASD.

In 2018, at the 8th International Research Conference on Adolescents and Adults with FASD, held in Vancouver, BC, about 40 adults living with FASD met with researchers. We talked about what they needed to know and have in place so they could participate in research. We discussed what collaborative research is and the group indicated that they would like to be part of the development of research projects. They liked seeing research led by adults with FASD, such as the health survey completed by Myles Himmelreich, C.J. Lutke and Emily Travis.

Participants in the discussion had been subjects in research, but indicated that they had not received much information about the studies after they were completed. Adults in the group indicated that they wanted to participate in knowledge translation of the research. They could make sure that the research information would get into the hands of people with FASD in a way that they can understand. As part of the session, participants developed a list of their research priorities.

One of the research priorities was in the area of assessment and diagnosis. They wanted to know more about genetic testing, and if it was possible to create a test that could bypass the requirement for confirmation of prenatal alcohol exposure. Similarly, they were interested in research that could identify an “FASD profile” which could be used diagnostically. They were concerned with misdiagnosis and would be interested in research that identified how many individuals with other disabilities may actually have FASD.

There was an interest in research to assess the level of knowledge of FASD in various professions, specifically doctors, educators and people working in the Justice system.

Not surprisingly, there was a lot of interest expressed in research about effective interventions. For example, they wanted more outcome research, so we know what works in the areas of employment, addictions, education, mental and physical health.  They noted the need for more longitudinal studies, because, as a lifelong disability, FASD looks different depending on the age of the individual. The need for research on FASD and aging with particular attention to FASD and dementia was also mentioned. They were particularly interested in research on the effectiveness of job coaching and peer mentoring programs.

They expressed a desire to see more research based on the individual, rather than on groups. For example, single case studies that followed an individual over time to see what works. Also, they would like more research using the point of view of the individual and their experience through life.

They noted the wide range of individual differences in people with FASD and wanted more research to help explain these differences.  They also noted 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. They felt that having more research to support their experiential wisdom would help them show educators and employers how to accommodate their needs.

One specific area of research interest was that of sensory integration. They questioned 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.

In terms of self-advocacy, they noted that research information can help them in a number of ways. They recognize that funding affects supports and services and want more information on fundraising and self-advocacy strategies. Associated with this was a need for more data on effective communication strategies for people with FASD.

They were interested in research on specific mental health issues such as the use of medications for people with FASD and effective addictions treatment strategies for individuals with FASD. Their experiential knowledge identifies issues such as the use of day passes from treatment facilities, as well as the limited duration of inpatient treatment and follow up as being barriers to treatment success for individuals with FASD. They would like to see research evidence to support their knowledge and assist in changing policy and service provision.

We were very impressed with the knowledge and wisdom of the group of adults with FASD who shared their afternoon with us. We encourage all who read this blog to help those individuals advocate for their research priorities.

 

 

 

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