Fetal Alcohol Spectrum Disorder is 2.5 times more common than autism (Flannigan, Unsworth, & Harding, 2018). Yet as the most common of all developmental disabilities it remains largely unrecognized and supported. While research is on-going for younger children in order that programs and interventions can be established to help guide caregivers and provide better outcomes for those with FASD, not much attention is paid to older children / teens or adults.
Yet with an estimated 4% of the population (in Canada) with FASD, that is 1,509,686 people (37,742,154 estimated 2020 population). We know traditional school is difficult without accommodations and support. The maiden’s journey has been well documented in this blog, including her attempt at post secondary. It was a disappointment because the program was meant for students with disabilities. Yet clearly there was no knowledge of appropriate accommodations for FASD.
Parents were not allowed to advocate for their young adult – the college wanted to see the base line level students were at. However, this method did not account for potential detrimental effects on students. Despite my best efforts to educate, they did not listen at first and the situation escalated to the point that by the time they were willing to listen, it was too late.
I am excited to see some on the ground investigation of experiences so that future college-bound individuals with FASD can be better supported and more successful.
Robin Burgamy a librarian, FASD advocate and co-founder of KAFASD, a regional support network for FASD recently had her paper Bright Futures: Creating College Opportunities / Programs for Students with Fetal Alcohol Spectrum Disorder published in Future Review: International Journal of Transition and College and Career Success. Some excerpts are below:
Bright Futures: Creating College Opportunities / Programs for Students with Fetal Alcohol Spectrum Disorder
When programs and supports are specifically geared towards adolescents and adults with FASD, their challenges and adverse outcomes can be mitigated. But few interventions exist for adolescents with FASD. Even though FASD is a lifelong disability, nearly all FASD interventions are geared towards school-aged children, even though adolescents and adults face greater challenges than children (Pei, Flannigan, Walls, & Rasmussen, 2016), and are at risk for the adverse life outcomes.
Higher education institutions that strive to serve the needs of diverse post high school groups and those seeking to boost enrollment by serving new populations should consider developing programs specifically tailored to the considerable number of young people in our nation with fetal alcohol spectrum disorder (FASD). Though often bright and highly verbal, these young people may have impairments in working memory, impulse control, processing speed, executive/adaptive functioning, and receptive language skills—things which would make attending college a challenge.
Parents worry about their kids’ ability to navigate the campus, stay on task, navigate the social milieu, and even though many parents feel their kids may be able to do college coursework, most feel they would still need accommodations in the areas of executive and adaptive functioning.
Though there are no 2-year or 4-year colleges in the U.S. with programs specifically designed to support individuals with FASD, some 148 colleges have developed either autism support programs or describe themselves as being autism friendly (Endlich, n.d.). Students with FASD are sometimes
advised to enroll in autism support programs at colleges — but the disabilities and the accommodations required by students with FASD are not the same as those provided to individuals with autism.
Adoptive and biological parents of children with FASD have begun to network formally and informally through websites, Facebook pages, support groups, and organizations. They help spread awareness about FASD, share experiences, and seek support and services for their children — not just for childhood, but throughout the lifespan. Some of these parents have come up with a wish list of components they would like to see in a post-secondary program for FASD. This is shared below. Input from adults with FASD who had college experience was also included.
- Presence of FASD-informed staff. FASD-informed staff is crucial for a successful FASD college program. FASD is a poorly understood disability, and strategies that work with other disabilities do not necessarily work with FASD.
- FASD students be more sheltered and supervised than a typical college experience, perhaps with a cohort group in which students live, eat, and learn together, with a low student-to-staff ratio.
- Smaller-sized campus (5,000 or fewer students) with well-supervised environments often work best for those with FASD.
- Alcohol and drug-free environment, as studies have shown that without support, greater than 1 in 3 adolescents and adults with FASD developed substance abuse problems due to impaired impulse control. In the world of FASD, it is easier to prevent a habit than to break one.
- Fun counselor-led group activities and communications/social skills support, since many with FASD struggle with isolation and difficulty forming positive or lasting friendships.
- Life skills / “adulting” type classes, including education on topics specific to building success for a student with FASD.
- Academic support and possibly the option to take classes online in a learning lab environment with peers and coach versus attending regular classes. with Peer mentoring, note-taking help, and coaching to keep pace with assignments and meet deadlines.
- Training about employment as it pertains to someone with FASD — and how to maximize their chances for employment success.
- A variety of programs of varying length and purpose: For example, programs for those who are degree seeking versus certificate programs versus independent living skills programs versus a gap year program. Some students may want to work towards a degree, while others may benefit from a rite-of-passage, supportive college-type experience with peers which provides training on topics as listed above.
- Wellness and stress reduction training. Those with FASD are often easily overwhelmed and at risk for developing secondary mental health issues such as depression.
- For those completing a degree program: The option to take a reduced work load. In conversations with adults with FASD, those who graduated typically took longer to complete their programs.
- For those completing a degree program, executive functioning accommodations and academic tutoring / coaching.
- FASD college programs could perhaps be run as a summer camp, or run concurrently with the academic year.
- Offering internships to master’s level students of psychology and social work could provide specialized staffing for college programs as well as train FASD informed professionals.
A large segment of our population is failing to meet their potential. Society is failing individuals with FASD and communities are missing out on their gifts and contributions when they are not offered tailored programs and supports.
Colleges and post-secondary institutions have an untapped source of students and an opportunity to take a leadership role in developing programs to serve and support individuals with FASD
I really hope people will share this resource with those who work in the transition and educational field. So many of the above 14 points were a reality for the maiden and failure to provide most, if not all, led to the systematic failure of her experience, as well many others.
Thank you Robin for taking the lead on this important topic.