Last week, we hosted our first ever open access JHS Pacific Speaker Series session. For the first time, we extended our Speaker Series invitation to any service provider, student, professional, or member of the public interested in learning about social and criminal justice. We received a tremendous response, and are excited to be opening up this important initiative moving forward.
Ripples of Hope – Addressing Stigma & Providing Support for People with FASD
Our May Speaker Series brought together Fetal Alcohol Spectrum Disorder (FASD) experts, advocates, and people with personal and lived experience for a series of inspiring presentations.
Together, our presenters explored the realities of living with FASD, challenged stigma and labels often associated with the disorder, and
identified concrete strategies on how we can provide comprehensive and
compassionate support to people with prenatal alcohol exposure (PAE).
Fetal Alcohol Spectrum Disorders occur when somebody is exposed to alcohol in the womb. The impact and breadth of effects vary individual to individual, and may include mental, behavioural, physical and/or learning disabilities with lifelong implications.
“With FASD, whatever cell is developing at the time where alcohol exposure is experienced, that cell’s development gets disrupted… alcohol impacts the entire body, not just the central nervous system.”
– Robyn Matthews, Quality Assurance Practice Consultant at Community Living BC
Every individual who has been prenatally exposed to alcohol has their own unique strengths, challenges, and experiences navigating life. This was emphasized resoundingly throughout the session, which makes the integration of a person-centered, strengths-based approach to supporting people with FASD so essential.
FASD can manifest in a range of ways, such as challenges with:
- abstract reasoning, planning, and organizing
- understanding or recalling a sequence of events
- connecting cause and effect relationships
- regulating behaviours and emotions
- sleep disturbances
- mental health
- the law
- problematic substance use
- maintaining employment or living independently
- acute or dull senses
Our presenters took a deep dive into what FASD can look like through personal stories; the challenges that the disorder presents to people living with it; the misguided labels often ascribed to them; the importance of assessments (to be diagnosed); and ultimately, how we can better support people with FASD. This was a packed session that we highly encourage you to watch.
FASD is a unique neurodiversity, in that it’s something that you often can’t see. Only some 5% of folks with FASD have the facial features often associated with FASD, though this is likely an overestimate. The diversity of symptoms, which are often not surface level, make it a highly underdiagnosed disability.
“Someone (with prenatal alcohol exposure) can look 19, have the expressive language skills of someone who is 16, and understand like a 7 year old. And the only evidence that we will have of this is the disconnect between what somebody says and what they do.”- Robyn Matthews
This, along with many other sentiments from our presenters, led each of them to make a key conclusion about how we can support people with FASD: to simply listen.
The Power of Listening
“One of the things that I always say that’s really important is that there should be nothing about us without us. When it comes to understanding the needs of people with FASD, I can tell you as an individual myself with FASD, I‘ve had so many people around me say, ‘this is what you need’… we’ve been putting people with FASD into boxes for so long. When we stop to take the opportunity to talk to the individual, that’s when you’re going to see a lot of different changes happening because you can hear and see things from a different perspective.” – Myles Himmelreich, FASD advocate
Each of the presenters emphasized that people with FASD are our greatest teachers. As service providers, teachers, family members, and a community, our goal is to create a safe environment that is conducive to trust and relationships so that the individual can express their needs.
Our role is to support people with FASD to get where they want to go, and we don’t know where that is unless we ask and listen.
“We think we listen, but sometimes we listen in order to do what we need to do. We need to listen to understand what they really need. And listen consistently, not just once in a while to see how well we’re doing and if we aren’t doing well, we need to change.”
– Tim Windle, FASD advocate
We also heard emphasis placed on the importance of collaboration, adaptation, and compassion – often in very specific concrete ways.
Collaboration and Adaptation
We also heard about Willow Place: a JHS Pacific program that is specifically designed to support women with FASD. Tim Windle, one of our presenters, was instrumental in the program’s development.
Tim’s daughter was diagnosed with FASD at the age of 19. In an eager attempt to support his daughter, he looked far and wide for services that, at the time, didn’t exist.
“I found my way to John Howard, and we created Willow Place… We started in 2014, with nothing more than an idea to do something differently. We didn’t know how to do it, but together we learned. The power in that is (JHS) said they didn’t know (how best to support his daughter) and I didn’t know; that’s important because we simply don’t have all the answers, so the message there is collaboration. Working together and finding a way to do things.” – Tim Windle
At Willow Place, and with many other FASD-informed services in the community, a key focus of our approach is that we adapt programming to what the person’s needs are, rather than expecting an individual to adapt to our programming. Collaboration and adaptation continue to be essential to the program’s success.
We also heard emphasis placed on the importance of compassion, the harmful effects of stigma and label, and the importance of getting assessed and receiving a diagnoses. We encourage you to watch the session, and join us in learning how to better advocate for and support people with FASD.
Meet Our May Presenters
Robyn Matthews, BA, CADC
Robyn joined CLBC in 2019 with the desire to collaborate and create change within existing systems for people with FASD and other complex neurodevelopmental conditions. Her education and career have focused on her passion to advocate and empower others, help them better understand themselves, heal from trauma, and build resilience.
Tim is the father to a 35 year old woman affected by FASD. He was involved in creating Willow Place, an innovative housing project, in collaboration with JHS Pacific. He is an advocate within the FASD community and has gained a strong understanding of FASD through his journey with his daughter.
While David has an honours degree in psychology and biology, he received his most important training in FASD from his two foster children. He co-founded the FASD Community Circle-Victoria, and recently co-founded a support and advocacy group, taught workshops to more than 1000 people and published 5 articles while living in Ireland for 18 months. For those of you who have follow-up questions for David, you can connect with him by email here.
Bernadette O’Donnell B.Ed., M.Ed.
Bernadette has extensive experience in education, research, and developmental disabilities. She is the founder and ED of the FASD Okanagan Assessment and Support Society in Vernon, BC; the only clinic in the interior of BC that diagnoses and provides supports for youth and adults with FASD.
Myles has been working in the field of FASD for over 15 years. He has facilitated mentoring and self-advocacy for individuals with FASD, and has been a co-lead on worldwide surveys, such as the 2021 Quality of Life survey Equity vs Equality Live and the 2017 FASD Whole Body Diagnosis survey.
David Gerry, invites interested individuals to connect with him at livingwithFASD@gmail.com if they would like access to Making Community Environments More FASD Friendly, a guide developed by the Cowichan Valley FASD Action Team.