Earlier this spring, we released more emerging findings from our CARE Study (Caregiver Approaches, Resiliencies and Experiences Raising Individuals with FASD). By now we have heard from more than 200 caregivers from all over the world!

Project Update

In our most recent biannual project update, we looked at caregivers’ perspectives around life transitions experienced by their children or adults with FASD, such as starting school, changing school, becoming an adolescent, transitioning to adulthood, and becoming a parent. Most caregivers shared that their loved ones with FASD had been through school related transitions, including starting (72%) and changing (78%) schools. Many (64%) also reported that their child with FASD had become an adolescent. Fewer caregivers noted that their individuals with FASD transitioned to adulthood (39%) or became a parent (9%). 

We wanted to know about how transitions affect caregivers, so we asked participants to rate the impacts these events had on their lives. According to respondents, the least stressful transition was beginning school, and the most stressful was becoming an adolescent. These findings may help to inform policy making around developing and allocating supports for families of individual with FASD. 

Caregiver Responses

In their open-ended responses, caregivers described some of their worries related to transitions, which included what kinds of outcomes their loved ones with FASD will experience without adequate support, opportunities for their individuals with FASD to lead meaningful lives, and concerns about the sustainability of FASD supports across the lifespan. As one caregiver explained: 

“There are no supports as he transitions out of school into adulthood… He is left with few options, and some are so negative.” 

 However, caregivers also shared insight into potential avenues for supporting successful transitions and healthy futures, such as case management through relational approaches, accessible services, targeted supports for older youth and adults, help for caregivers, and connection to an FASD-informed community. For example, one participant described the need for: 

“Informed support to help us understand our options and possibilities for transitioning into semi-independent living with good social supports in place… As they become an adult and ready to move out of the home.” 

We continue to learn so much from the stories shared with us by caregivers about what it means to support children, adolescents, and adults with FASD. 

Resources for Caregivers

Here are some resources related to transitions that may be helpful for caregivers: 

• Transitioning into Adulthood with FASD (webinar) 
• Youth with FASD Transitioning Initiative Toolkit (resource developed by Lakeland Centre for FASD) 
• Research articles 
  • State-of-the-Art Review of Transition Planning Tools for Youth With Fetal Alcohol Spectrum Disorder in Canada 
  • Transitions into adulthood for people with fetal alcohol spectrum disorder: A scoping review of promising practices 
  • System Kids: Transition-Aged  Youth From Foster Care to Developmental Services 

If you’d like to participate in the CARE Study, please fill out this survey or pass it along to your networks! You can read the full project update here. 

Related Content     

Found this blogpost interesting? We’d recommend checking out the following resources:     

• Become a member of CanFASD – be the first to know about project updates! 
• Donate to the FASD Lived Experience Leadership Fund – support people with lived experience to participate in research. 
• Foundations in Fetal Alcohol Spectrum Disorder – online course intended for everyone that will come into contact with individuals with FASD including families.