Workshops

If the ALC could have one wish for those with FASD, it would be that they talked only as well as they understood, in which case the communication disability would be obvious. Unfortunately, this is not the case. There are only a small handful of disorders (genetic or brain injury, etc) in which receptive language is impaired while expressive language is good. But FASD is not a genetic disorder; it is not a stroke; it is not a traumatic brain injury; and since 75% of people with FASD are not intellectually disabled, this big problem that affects almost everyone with FASD, regardless of intellectual level, gets missed. So why is this a missed problem in FASD? What happens? How does it happen? What can be done about it? Because humans who talk well are almost always assumed to understand well, the kind of daily behavior that is affected in FASD is seen to be just that: “deliberate behavior” and is the root of so very many problems. But effective communication is a two-way process and only one part is in any way under any control of the person with FASD; the other part is completely within the control and power of the other person. Even though it is said that 70% of all communication is non-verbal, it is the 30% that is verbal communication, both spoken and written, that is so crucial to how we function. If we want to have functional, working communication, in which messages are actually understood as intended, we have to deal with that 30%.

This presentation came about as the result of the ALC being asked to give the province (state) wide Salzberg Memorial Ethics Lecture for the Provincial Health Services of British Columbia. The ALC was the first and only person/group ever asked to provide this annual lecture who was not an ethics expert. We titled it “The Language of Diagnosis: The Unintended Messages in the Language We Use”. After reading the description for what the ALC was asked to talk about in that presentation, which included the “impact of labelling”, and the words “increasing resilience and capacity”, the ALC members talked a long time about what we think we can, want to (and should) tell you about those “unintended messages” from the point of view of many adults who have FASD and the teens we mentor, and the children we all once were, because “unintended” messages all too easily become unintentionally “intended” messages. “Unintended messages” and “labelling” have a major (and traumatic) impact, and the KEY one, the one that people with FASD hear everywhere, from many, many different people and places, over and over again, is that there seems to be something terribly wrong about having FASD. The ALC want people to think about this, to consider what role we all play and how we might do things so that all messages are intended, effective, supportive and useful, because resilience only happens when what is said is what is heard, and what is actually meant.

In this workshop, the International Adult Leadership Collaborative (ALC) of FASD Changemakers will explain and talk about what they call “inside the box thinking” behavior to describe how to better understand and think about FASD to support those who are living with it. This information is what they have learned as adults about a way to consider how, and why, their brains work differently and to understand, specifically, why the “behavioral” difficulties those with FASD of all ages experience occur. They will talk about this from five specific areas they believe are important to understand for anyone who is a parent or works with people of all ages with FASD. They believe this understanding is essential in working to build eventual success for those with FASD. They will present from the reference that this is “living experience… not lived experience because “we are not past-tense; it is what we do; what happens every day” and that you must understand the processes involved to be more effective. They will apply the lens of what they wish people had understood when they were children.

For people with FASD, memory affects every area of our lives, from the time we get up in the morning to the time we go to bed at night. All day. Every day. But what happens when both sides of what is experienced understand things differently?

If no one else experiences reality in quite the same way as we do, whose reality takes precedence?

Because memory is NOT just a problem with memory. It is also its interaction with something else critical to HOW it is used that no one thinks about.

The biggest problem, by far, is that we do not think people understand what that is or how and why it occurs for those with FASD in real life, in real time, in a real world with real people in real circumstances, in life outside of a testing room. And how those real-life experiences will occur independent of memory test scores, because memory testing never even considers this.

Published.

In 2019, the ALC did its second Lay of the Land Survey on the quality of life of teens and adults with FASD because they believed there was a significant problem in this area, and that no data existed on the lives of those with FASD. This workshop will provide the results of this survey which was completed in 2020. Using the same format as in Survey #1, the survey was designed and developed by the ALC, with questions the ALC knew were important to answer. It includes information on Adverse Childhood Experiences (ACES) and something they developed and call Adverse Continuing Experiences in Adulthood or ACES-A., housing, homelessness, parenting, relationships, education, employment, finances, victimization, etc. The results on 461 adults have been widely reported and were published in 2024.

Published.

It has long been suspected that adults with FASD have more health problems than the general population, but no research on it had been done. This was in large part because no one seemed to be able to find the adults. The ALC knew that they could. To begin to remedy this, and to provide some basic data for researchers to begin to format health research, the ALC undertook to develop and design a 260 questions survey on the health of adults with diagnosed FASD in 2016. They were provided with behind-the-scenes technical software support only. The survey was widely distributed and close to 700 completed surveys were returned. Respondents ranged in age from late teens to early sixties. After excluding surveys with problems, a total of 561 were included in the results. Preliminary data was reported in 2017, and final data in 2019. The survey was published in 2020. This workshop will provide the results of the survey for those who have an interest or questions on the health of adults with FASD. This survey has led to the funding of several studies on the health of adults.

Twenty years ago, two adults with FASD came together to challenge the system status quo. To do something no one really thought people with FASD could do: change the message because if they didn’t… who would? Because it is what you DO with your experience that changes things… NOT the experience itself. Today, the core leadership members in what is now the International Adult Leadership Collaborative (ALC) of FASD Changemakers lead the work and have changed the direction and thinking in the field of FASD. So, this is the story of how it all came to be, and like all good stories, begins with “Once Upon a Time”…

The grief attached to FASD is something individuals with FASD experience across their lifetimes in almost every area of life, starting in childhood. There is little awareness of how this has impacted those with FASD across the ages, particularly by adulthood. With it goes an unrecognized, unacknowledged, and almost always avoided on-going process of grieving multiple losses that continue to occur in the absence of recognition. Rarely ever talked about, let alone understood, by professionals, families or by those with FASD themselves, this is a missed opportunity often at the root of so many failures and difficulties those with FASD experience. Understanding the “don’t ask, don’t tell, never talk about it boxes of denial”, what they are, what they look like and why they happen, is essential for providing better mental health services for individuals with FASD. Their quality of life, especially by adulthood, has been significantly negatively impacted by ignorance of the need to deal with these kinds of losses. This workshop is developed from the personal experience and expertise of the ALC of FASD Changemakers, and their work and interactions with other adults who have experienced these losses while growing up and across their lifespans. It is what they wish adults had understood when they were children but were too young to understand and could not give voice to. It will bring needed representation of the different types of grief experienced by those with FASD into the mainstream of FASD professional work, support, and service delivery. It will underscore the importance of complicated grief, as an essential mental health issue to address, and the importance of recognizing, allowing, and supporting individuals with FASD themselves to grieve so they can move on with their lives, regardless of their ages.

In this workshop, the ALC will discuss what we believe to be some critically important issues that need to be thought about when considering what has gone wrong for adults with FASD.

The term “FASD Orphan Child of Disability” was coined 40 years ago by a provincial court judge in British Columbia, Canada to specifically describe the adults with FASD he was seeing in his courtroom. There is still no better term to describe what happens to so many people with FASD, especially those who did not (or do not) have the gift of early and accurate diagnosis and the support of informed people in their lives. Adults with FASD become orphaned for many reasons; orphaned in a society that simply does not understand, overlooks, disregards, neglects and in particular, avoids what is difficult and the things it could do something about.

What happened? How did it happen? Why did it happen? And why is it STILL happening? What do we need to really think about in 2026 in order to change the next 40 years? If we don’t want to remain part of the problem, we need to become part of the solution.

In this workshop, the ALC will discuss what we believe to be some critically important issues that need to be thought about when developing diagnostic and support services for people with FASD in any community, because these are universal. This discussion will be framed from an equity lens because quality of life and belonging are really about dealing with the underlying differences of opportunity and access to resources within all the systems and services that make up society. The first two principles of ethics are to help and to do no harm. So, when people with FASD become a cost, what is the ethical tipping point? What happens when the cost outweighs the value those with FASD can give? Does this mean they are less valued members of society? Is their worth less than yours? Do they become disposable? This workshop will challenge your thinking and ask you to consider what is truly meaningful.

Several versions, one specific to mentoring training.

In this workshop, the ALC will discuss how to understand FASD from the perspective of an origin story that was, for far too long, seen as hopeless. For what you think, you become and that can determine the direction of your life. If you feel you are less than… that you are a “loser”… then that is what you become; that is who you attract. And if that is what you imagine to be your only future, then that is what you create as your working reality. So, the ALC believes that we need to think differently: When you understand that FASD is ONLY an origin story… it is NOT a destination, then (again) what you think, you become and that can change the future direction of your life. So, if you feel you are “equal to”… NOT “more-than”… just “equal to” and you might be a “winner”… then that is what you can become; that is who you attract. And if success is what you imagine to be in your future, then that is what you create as your working reality. Because we are MORE than what happened to us.

In this workshop, the International Adult Leadership Collaborative (ALC) of FASD Changemakers will explain and talk about what they call “inside the box thinking” to describe how to better understand and think about FASD to support those who are living with it. This information is what they have learned as adults about a way to consider how, and why, their brains work differently and to understand, specifically, why the difficulties they have occur. They will talk about this from multiple areas they believe are important to understand for anyone who is a parent or works with people of all ages with FASD. They believe this understanding is essential in working to build eventual success for those with FASD. They will present from the reference that this is “living experience… not lived experience because we are not past-tense; it is what we do every day” and that you must understand the processes involved to be more effective.

While the ALC know that life is a very complicated, demanding and constantly changing balancing act for children, teens and adults with FASD, most people don’t know that… or definitely they don’t understand it. For adults with FASD, it is like having to keep a whole bunch of plates spinning atop of those long sticks you see acrobat/jugglers doing so easily. But if you have FASD, one or more of those plates is, for sure, going to fall at some point and probably going to bring down a couple more with it… and each plate has a bunch of things sitting on it that you need to keep both spinning AND balanced at the same time. Thinking about that, the ALC decided the best way to try to make things simple and clear for those who work in the FASD field, was to use analogies from areas of life that people are familiar with and/or with games that most people will have played as kids or still play in adulthood. When you are understood, respected, and supported how you need to be supported, when you need that support, not assumed to be lazy or irresponsible, and treated like you have value, you have dignity.

This webinar is a space for teens and adults who have FASD or think they do, to talk to members of the ALC, ask the questions they might not ask anyone else and get some honest answers. They will hear from those who experienced the same difficulties they do and still struggle, but who have learned some things about how to make life better along the way.

NOTE: also done for parents and professionals to ask anything they want.

The first step to getting somewhere else is deciding you are not going to stay where you are. For what you deny or ignore, you delay that which, when accepted and faced, can be conquered. But first we must face the unease, the fear, the isolation, the exclusion and the marginalization that our reluctance to tackle this issue has helped to create and deepen. No one understands stigma better than those who have experienced it firsthand over long periods of time. We need to listen to (and truly hear) what they can tell us. We need an open, honest dialogue that puts the issues, biases and beliefs and questions on the table for discussion from all angles and differing perspectives. This workshop is meant to be interactive, and participants are invited to a presentation that will frame some thoughts and ideas and into a moderated dialogue about the issues that will be raised.

What happened with our prevention messaging that, with the best of intentions, went wrong? It is a follow-up to Let’s Talk #1 on Stigma and Stereotyping and is meant to continue the conversation with a specific emphasis on primary prevention from the experience of those with FASD. It will be interactive, and a moderated dialogue will be part of it.

Unintended messages and stereotyping have a major (and traumatic) impact, and the key one that people with FASD hear, everywhere, from many different people and places, over and over again, is that there seems to be something terribly wrong about having FASD; so wrong that we cannot talk about it; so wrong that there are only negative, stereotypes and stigmatic outcome: outcomes to be avoided at all costs by refusing to name or diagnose the disability. Systems and the media see both groups negatively. It is so easy to judge what they do not know from personal experience or when they only have some (or often none) of the information they need, especially when they are so removed from the situations of those with FASD or the women who give them life.

To quote Douglas Paget “we are aware that we are less than what some people want us to be, but most people are unaware that we are so much more than what they see”.

This workshop includes a challenge to the current suggestion of changing diagnostic terminology.

Deepak Chopra said: “every cell in your body is eavesdropping on your internal dialogue”. That is the heart of stigma that most people are unaware of on the actual, conscious, working level of their own subconscious inner thoughts and feelings. It is always what people truly think, feel, believe, deep down, and unacknowledged; not overt, but covertly implied and directed towards women and people with FASD that carries the most weight because what is not overt can so easily be denied as real. A “yes… but” justification, because even when you provide people with all sorts of new ways to talk about FASD, they continue to act using those negative, deeply ingrained internal dialogues.

So, why is that? Challenge what you know. Challenge what you think you know.