The graphic for 2022 was updated, in an effort to place the focus on the strengths. I am currently looking to see if there is a more up-to-date study, although we do know that many individuals with FASD require assistance of some sort with daily life activities. But that is okay. None of us are truly independent. We all rely on others for many aspects of our lives. And they differ for different people. The problem is society still pushes independence as the narrative and only way. We need to normalize interdependence. We need to teach our children it is okay to ask for and receive help.
The original graphic is below. I left it as it does contain information that illustrates areas where an individual may struggle and provides a focus for support.
FASD: Dependence, Independence and Interdependence
Today we expand on another portion of the landmark Study Understanding the Occurrence of Secondary Disabilities (Ann P. Streissguth, Ph.D., Helen M. Barr, M.A., M.S., Julia Kogan, EdM., Fred L. Bookstein, Ph.D.) looking at management of Daily Life Skills for the participants who were 21 years of age and older.
This is an area of great interest for me, as the maiden is now an adult, and although the report does not show anything I didn’t already know about the maiden’s own strengths and challenges, it did highlight a few interesting observations.
Important to note this Study divided the group into those with FAS and those with FAE – rather than the combined FASD. One common theme: 80% of all adults in the study experienced some form of dependent living and problems with employment, regardless of their diagnosis. Only 8% had no employment issues and were independent.
Some of the highest protective risk factors that created better outcomes for adults:
- Diagnosis before the age of six
- IQ above 70
- Being female
- Having a driver’s license
- Not having two caretakers (although authors speculated not NEEDING)
Daily Life Activities Requiring Help or Supervision
The study broke down 12 daily activities that the adults sometimes or frequently needed help with. Not surprisingly the daily tasks requiring the most help were managing money and making decisions. The Report only provides a graph (as opposed to actual numbers), so my percentages are rounded to the closest number.
- Managing money 80%
- Making decisions 75%
- Getting social services 70%
- Getting medical care 65%
- Interpersonal relationships 55%
- Grocery shopping 50%
The following are the daily life activities the majority of adults (over 50% could manage). In order to focus on the positive, I flipped the numbers in order to focus on the percentage that could undertake these activities without some or frequent help.
- 55% could cook a meal without support (45% required help sometimes / frequently)
- 55% could structure their leisure time (45% required some or frequently help)
- 55% were able to stay out of trouble without some or frequent help
- 65% were able to manage their hygiene without some or frequent help
- 75% were able to use public transportation independently
- 95% were able to get dressed without some or frequent help
Females, over the age of 21, were most likely able to do all 12 activities without help, but only five were able to.
While on the surface this can be disheartening, this Study was conducted twenty years ago. While challenges may remain the same, I would think that for some areas around the world, there are more supports and services which would likely reduce the challenges experienced by this group. We do live in a rural area with minimal services. During her younger years, and for the most part, FASD was not recognized as a disability requiring unique support. When we applied for adult services, she qualified because we updated her neuropsychological report and she received another diagnosis that meant she was accepted. FASD alone would not qualify. We also waited almost 3 years for funding and another 2 before we saw an increase in the minimum. I am hopeful that as we progress, we will find a good circle of care to surround her, so she will have a good quality of life.
It is interesting however support services for children exist but not at the same level for many adults, and it is dependent on diagnosis. Or you have to reapply as an adult as if somehow your disability disappeared because you turned 18. I can’t speak for others, but as a parent, it is more difficult to assist with some of these areas, as the now adult wants to be independent, even if clearly the parent can see the adult has some challenges. Sometimes having an outsider step in to help produces better results, but again, for some, there are no outsiders to help.
Day 65 will look at Employment.