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 behaviour, 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 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 staying 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 is extremely disheartening this Study was conducted twenty years ago, and while the challenges will likely 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. This isn’t the case for the maiden – we live in a rural area with very little services, and for the most part FASD was not recognized as a disability requiring support, and even now as an adult, she qualifies for services because she has a Developmental Disability Diagnosis – there is a wait list for services. So, in our case, twenty years later, the results for her will likely be the same, until she can access services and support to help her live an interdependent life. I’m not sure she will ever be independent – but as long as she has a good circle of care around her, I feel confident she will have a good quality of life.
It is interesting to me that twenty years ago we knew these were areas adults with FASD were likely going to need help with, yet twenty years later there are few programs that help. 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 significant challenges. Sometimes having an outsider step in to help produces better results, but again, there are no outsiders to help.
Day 65 will look at Employment.