Last year, 2022, Kat Griffin (another member of the ALC of FASD Changemakers) and I did a plenary keynote at a conference on FASD and employment. We were asked to talk about what employers and job support people needed to understand about brain function in areas that affect/occur in employment situations.
So, we spent quite a bit of time thinking and talking between the two of us about how we could make the employment/job site difficulties easy to understand for employers and others who have very little, if any, experience with adults with FASD.
We decided the best way to try to make things simple and clear 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.
After the presentation, I thought I should write a blog because the feedback we got was that this made a lot of things very easy to think about and understand. I heard this from both employers and job coaches AND from both teens and adults with FASD who attended the conference. So, thinking that this might make things easier for everyone to understand about us, what follows is a major written expansion of the presentation, one we hope might be useful in all areas and for all ages.
While WE, who have FASD, 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.
Consider that each area of life is a separate dinner plate, and balanced on top of EACH PLATE are the bread plate, the salad plate, a dessert plate, the pasta bowl, the soup bowl, the cereal bowl, an additional dessert bowl, the cup and saucer, a coffee mug, half full drinking glasses, two or three straws (two bent and one straight), several different forks, different knives and half a dozen spoons plus a couple of crumpled napkins and the paper from the straws, and, oh yeah… don’t forget the serving dishes! Today only some of them are there. Tomorrow, all of it. The next day, maybe none of them. Constantly needing to re-balance what is on top of the plate (that you need to keep spinning, mind you) on top of the stick that you are holding! Then you need to walk across the room after every meal carrying all of it piled on top, while you continue to keep the dinner plate spinning, to put it in the sink or dishwasher without dropping any of it. Ever.
And… remember that EVERY single area in life we need to manage is on a DIFFERENT plate that adults with FASD need to keep spinning. If you are SURE we can spin a few more… you are likely to be making an error! Just because we’ve got a few plates spinning, and all the things on them balanced at that moment, it does NOT mean you (or we) can keep adding things. Our plates are almost always over-full and as much as we might LIKE to keep doing more… we simply can’t.
Everyone makes mistakes but not everyone pays the same price. This is a lesson that adults with FASD learn the hard way.
So, bearing this in mind, I want to talk about some of the things that cause problems for people with FASD and particularly, for adults.
ORGANIZATION AND STRUCTURE: is like playing the game of Jenga.
When you set up Jenga, you put 3 blocks side by side in one direction and 3 blocks side by side in the other on top of each other until all the blocks have been placed and you have a solid tower. Then you start removing blocks one at a time and placing them on top of the tower to build it higher… There IS a little wiggle room for things to move BUT removing the wrong block too soon and too fast with the expectation that it will still be a standing tower… is a mistake. Take away one block and you take away everything that block represents; the order, the routine; the structure. Those of us with FASD have a complete set of Jenga blocks… it is just we cannot compensate for more than a few of the support blocks being moved.
If you don’t know HOW to compensate for the missing block… the block that you took out will have weakened the base or made it fragile. It wobbles, it shakes. Everyone holds their breath. Somehow it stays a tower… but when the next person goes to re-arrange something… If that person did not see the number of blocks that were already re-arranged and thought they could just take out another one… and the tower falls… the question is “well WHY did it fall?” Because when they take out that block… people do not see the importance of the arrangement of the tower.
And… in what environment is this Jenga game being played? Is it on a carpet? On a slippery tile floor? On a wooden table? Or one of those shaky fold-up card tables? If the shaky table moves even a little while playing, the normally steady tower in which you could possibly have moved something safely… falls. Not everyone can see the surface the game is being played on… all they see is that they all look like they are flat. But how do you know that? What if they aren’t??
The environment the Jenga game is being played in is the most important one you need to consider. You set up your Jenga game in the BEST environment you can; because everybody’s day starts with the arrangement of their personal Jenga tower.
You need to know/decide what blocks to remove or leave alone. When you put a removed block onto the top, you are actually saying this block is not really important, because you re-arranged things and left a hole that you did not think needed filling! Why? Because you think the adult with FASD can compensate for a removed piece of their tower. Some people with FASD can do it: build their tower higher; but others… most of us with FASD… cannot do that. We do NOT KNOW what block will make it fall.
Anyone who knows FASD knows that structure is important and Jenga is all about structure.
And it is… but it doesn’t always look the same. Some of us need all the blocks and some of us only need some. But we all need some sort of structure to make our Jenga tower work. Something my Mom taught me and talks about is that structure is like a blueprint for building a house. First you build a solid foundation, then you put up the walls, lay the flooring beams and the ceiling beams; then you put on the roof. Then you install the doors and windows and put in the lighting and the flooring. And maybe you build a fence around the house when you lay the sidewalks. But you don’t put up the walls before the foundation is complete if you want your house to stand. And after you have the house built, finished and functioning, you can renovate or change what is inside the structure when you want or if you need to: BUT ONLY as long as you DON’T remove a bearing wall! Because if you do that, the Jenga tower falls down. So, you MUST know what the bearing walls are for a person with FASD. And they may not be what you think. For me, being able to go and lie down and sleep whenever I need to is a critical bearing wall because the mental energy required just to think and try to remember is enormous and draining.
EXPECTATIONS!! Are like playing a whole bunch of GIGANTIC games of Checkers all at the same time.
You can only move one piece, one way at a time, so you expect all the other people you are playing against to do the same thing. And you can’t move backwards (UNLESS YOU ARE THE BOSS, OR THE PARENT, and then the rules change).
And if you are not looking at each whole board at the same time, (looking ahead), you will miss something, and your checker will get jumped. While you may still have the rest of your pieces, you can only adjust your GAME (performance) with what you have on the board. AND ONLY with the resources you have and ONLY IF your checker pieces don’t get captured or fall off all the different boards you are playing all at the same time. Think spinning plates!
And we have no idea if we can meet expectations because we have no idea what could go wrong, when, where, why, or HOW, or what to do about it. AND… because we really want to do a good job at whatever it is… we want to comply… we want to be successful… when you ask us to do something more… or it feels like something more… because THAT is often the issue… we are likely to either say “yes” which can overload us or cause us to fail completely OR we have some sort of melt-down because we just cannot do it… if we even understand what “it” is and cannot just say so.
ATTENTION: playing a game of Whack-a-Mole under a shiny spinning disco ball!
It’s trying to figure out what is most important when everything is telling you everything is important and what you need to focus on keeps changing.
Like the fact that if the lights are flickering… WHY are they flickering? If I smell something new… WHAT is that smell? There is a noise… WHAT is the noise? Do I need to be worried? And oh… HOW do I stop paying attention to the music that is playing?? Because it is driving me nuts and I cannot focus on anything else.
I often cannot just ignore… because when something changes, I need to figure out what I need to pay attention to, and it can become impossible to sort it all out in any kind of short space of time. And if I am told I need to “pay attention” to whether or not someone or something “needs my attention” (like… what do you mean?)… if I try to ignore other things to try to focus on what you are telling me, that means I also ignore parts of what I am already doing because I am just trying so hard to focus on ONE thing, but which “one thing” is most important? How do I know? How do I decide? It is exhausting!
MISCOMMUNICATION
Different people telling you different things, like different ways to do something or what to do, when to do it (or, importantly, what, where and when NOT to do it): a version of Back Seat Driving or a version of the Telephone Game.
This is almost always a problem. When you are in a place with more than a couple of other people, and because you don’t KNOW from day to day what will change, you depend on others to assess a situation and tell you what to do. As soon as more than one person gives an instruction and then a 2nd person repeats that, the instruction will CHANGE because the language used will be different. So, when someone in charge has told someone else who may even have told another person what to tell you, it gets lost in translation. And, in some places, directions can get passed along through quite a few people and each time the message is a little different. Think of classrooms, families, job sites, meetings, appointments, social activities.
And then… someone tells you to do what you are doing differently or in a different order/way than you have been taught to, or usually, do it… so who (or what) are you supposed to listen to?
PERSEVERATION
Is like running on a hamster wheel, stuck in one spot or like being on a treadmill, working very hard but with no results to show for it… no forward motion. It gives you the illusion that you have been walking but you haven’t gone anywhere; or spinning your wheels stuck in mud that is sucking you in… sometimes you need a push to get out of the mud and sometimes the person pushing the car will get blowback.
The person with FASD, who is driving, is revving the car engine and doesn’t like that you need to push them… they may actually appreciate the help, but it doesn’t mean that you are not going to get dirty and get mud on you as you try to get them un-stuck. Think about this in relationship to how anxiety and poor memory might drive this over-thinking… if you are terrified of forgetting, you over-focus on remembering! Then… you over-drive the road conditions in the mud and you end up stuck on something!!! You are so worried about the road itself that you don’t even see the mud until it happens.
FOLLOWING DIRECTIONS: is like the game of “Simon Says”
Simon says DO THIS… but what is THIS?? Or HOW do you do it? Is it one thing, or five things… or is it 10 things? How do I know if the one thing is one thing or involves a whole bunch of steps? And if you stop me in the middle to do something else… does that mean this task is finished? Following directions is about skill, memory and sequencing… quickly.
UNDERSTANDING LANGUAGE: Game of Charades
Most people with FASD are good at language output (at talking) but very poor at interpretation (making sense of what is being said), independent of cognitive ability (IQ). And what people expect from you is almost always based on how well you speak. Think about it…
Understanding language is like playing the game of Charades; the person with FASD has to guess at what you intend; what you are trying to tell them. Think about it…
Most brains work like a thesaurus: all the possible meanings or ways to interpret what has been said (the words someone uses) are in one place, all grouped together so when you speak to me, your brain has already checked the thesaurus and you absolutely KNOW what your words mean in one action and why? Because understanding language is a very sophisticated generalization skill, something most people just “do” without any thought.
But I don’t because I cannot. Context eludes me.
Something I figured out is that MY brain works more like a dictionary when someone talks to me. I have to look up what has been said (each possible meaning) every time to find out the meaning in what you are saying to me… this time… every time. Then I need to look up another possible meaning for that word or what it is you said. And another. And remember what it is you said to begin with! Because, unlike the thesaurus, all the different possible meanings aren’t in one place. Then I have to decide which meaning is the right one. And when you use idioms and metaphors… I can be totally lost. What does what you say MEAN in this instance because context is meaningless to me.
Or what if it is a word that sounds the same but has totally different meanings? Like to, too or number 2. Or pale or pail. Or see or sea. There are hundreds of words that sound the same but mean totally different things. Or what if it is a word being used in a bunch of different ways to mean totally different things that you don’t actually say?
Like “watch the kids” (means “take care of or look after”, which also means “keep them safe, maybe feed them”) or “watch the movie” (means “eyes looking at screen, paying attention”, and be able to talk about it after) or “watch where you are going” (means “be careful… you are going to bump into something” or, maybe you already did); “watch for cars” (means “look for danger, figure out how close the cars are, and don’t move until it is safe to do so”, and while we are at it, if I watch for cars, does that mean also trucks, or buses? Not to mention, how do I know how close a car is; how fast it is going? How long will it take me to cross the street? When is it safe?) “Watch the time” (means you are going to be late if not careful… or the cake needs to come out of the oven… or there is something you need to get done probably before something else!… three quite different things). “Watch what I do” (means pay attention to what I do, how I do it, then almost always means copy it yourself, but that is, for sure, NOT what you said). “Watch the door”… okay, for what??? (could mean several different things from “don’t let it bang into you” to “look for a specific person to come” to “don’t let someone (who??) in” to “stand guard because you are doing something wrong”)
I can talk circles around most people… but that doesn’t mean I understand THEM. I don’t a lot of the time, no matter how well I talk. I can use idioms and metaphors… but I have trouble understanding them when people use them with me, and never fast enough to function with them. And I should point out, there are absolutely thousands of them that people use all the time!
I am Playing Charades without any idea of what it is you mean, so how can I even begin to guess what you want me to do?
And when I guess… or act on what I THINK you might have meant… which is only what I can guess at… and my HONEST best guess based on what it is I understand your words to mean… what then?
This is all about being able to generalize meaning… to “infer” based on what I think is going on, what it is you actually mean… probably the most complicated thing anyone with FASD needs to do… and the most difficult… and DEFINITELY the most frustrating!!
And think about this: many questions that people ask are not actually what they want to know.
How many answers are there to the first question here? Could be “with my parents, boyfriend, wife, kids”; “in a house, in an apartment”; “at a specific address”; “in Vancouver, in New York”.
What is it you actually want to KNOW; what do you want me to TELL you? How many questions do you need to ask to get the answer to “tell me what your address is”? And… DON’T say “give me your address” because I can’t GIVE it to you… just tell it to you!
How many plates do you think I need to keep spinning just to understand words??
INFORMATION PROCESSING: is like the game of Guess Who?? Only it’s Guess What?
You have to go through the process of eliminating all the possibilities to figure out what information is actually being given to you; to get to the facts of whatever it is you are doing, need to do, figure out, NOT just the language, and it is NOT a fast process!
The gears grind much more slowly. But they DO grind the way they are supposed to… they DO work… just much more slowly if you have FASD. And I don’t mean just a few seconds longer here… it can be minutes or hours, sometimes days.
Because the technology installed in our brains is not the same as the operating system other people have.
For adults with FASD, information processing (information coding) is not automatic… it is slow and arduous. Write a code and “a” happens… or write almost exactly the same code and “b” happens BUT, every time, you have to figure out what line of code made “a” or “b” work and HOW to get the same results you want.
Even if and when you have the code, what happens if halfway through, a chunk of the code goes missing; disappears? How do you complete the circuit and get to the end result? Complete the task? Complete the assignment? Do what you have been asked to do? How do you complete a day’s work?
So, what looks like it should be a skill is actually a game of chance. That is the key piece in the gears that often gets stuck… and then…
Processing under pressure… when you don’t have enough time, when you are stressed or pressured or more anxious than usual… the information you need isn’t there. Trust me… it simply isn’t! Everything needed on the plate fell off.
MISINTERPRETATION: is like playing the game of 20 Questions
I heard and actually understood the language you used but STILL did not understand what it was you wanted because we are both interpreting something differently.
You see it one way and I see it in a very different way; like if you ask me to clean (or “do”) the floors; you meant wash and I thought you meant sweep. I need to ask several questions to find out exactly what I need to do, or not do.
Example: Last month I was asked to do a ‘carry out’ at my job. I asked, “do I need a coat?” Answer from manager: “we’ll be quick”. Yes, but “DO I NEED A COAT”???? Manager meant “no” because her verbal short-hand was that “quick” should be interpreted as “no”! but that is NOT what she said. I knew it would be “quick”… just NOT if I needed a coat! I, and most people with FASD, do not do verbal shorthand interpretations.
Example: Kat asked my Mom if she should come out to stay at our place “tonight or tomorrow”. Mom said “whatever works”. That is NOT what Kat was asking or what she needed to know. It is like we are on completely different roads. And my mother definitely knows better!
We need yes or no, direct or specific answers, nothing vague or unspoken; implied meaning does not transfer, because we are not mind readers; because we don’t have a thesaurus like you do! We have a dictionary!
MULTI TASKING
Remember what I said about expectations? They must fit with the person. We will say “yes” or agree soundlessly when we should say “no” or “I need help” or “I don’t know how to do that” or “that is too many things”… but we won’t, because we don’t want to look bad or less able or be seen as someone who doesn’t want to work or do what we are asked to do. And for people of all ages with FASD, many things we are asked or expected to do are really multi-tasking because they require multiple steps with multiple different focuses and multiple different understandings.
But multi-tasking is something that is difficult to very difficult to downright impossible for children or even adults with FASD. And when you give us what is a multi-step task, or we take on more than we can do… this is what it looks like. And the more sticky notes you (or I) put up, the more that simply fall off because even if I can do the steps or the extra things I was asked to or agreed to do, I probably won’t remember.
PRIORITIZATION: what do you want me to do first?
A Connect the Dots activity, but which should come first for the person with FASD? Where do you start? What is most important?
Which is why a general list does not always work because it does not say WHAT is most important or most necessary or has to be done before the rest for some reason.
And when doing any task, things change all the time. Looks like it should start at top of the list, or 1,2,3,4… BUT what is the easiest or best or most logical thing to do first… might not be “#1”… or “#1” might not be the most important task to the parent or boss… or might not be #1 today, but will be tomorrow. All these little dot boxes have the same number of dots, but each has a different place to start and different order, if the order is even understood! And it actually requires that you know there are dots to connect!
MEMORY
Memory (forgetting needed things for work/school/activity like a bus pass, shoes, name tag, apron, phone, along with all the tasks involved) is playing that awful game of Memory or the electronic game of Simon (the one with the 4 colours and sounds).
But playing Simon is like life: as soon as you get used to balancing a spinning plate, someone adds another element or task or obstacle (in the electronic game of Simon it is colour or sound) and it screws you up and over goes the plate.
And watch the short-circuiting… it is NOT that we never remember… we do. But we forget all the time because we have such problems with working memory… every time there is a little glitch in how neurons connect… it is so very often seen as a behaviour; like we don’t care; are lazy; irresponsible. There is NO area this does not impact.
But the problem in FASD is NOT skill. A skill once learned… is LEARNED!! The problem is REMEMBERING TO DO IT. The problem is MEMORY. Full stop. Period. End of story. It is NOT a choice. It is NOT a lack of motivation.
But this spinning plate is full of ice cubes and is always tipping over with important bits and pieces constantly melting off. But the more you try to catch them in your hand and hold onto them, the more they melt and the less you have of them; they evaporate into thin air.
Think about this, really think about it. Because this is one of the areas where equity REALLY comes into play. You won’t remember what you don’t remember: because you can’t.
Memory is about housing, health, employment, education, nutrition, safety, parenting, social acceptance, friendships, finances, behaviour, activities, actions and all your relationships and every interaction you have with any group of people or system you are involved with.
MEMORY IS WHAT YOU NEED FOR SUCCESSFUL FUNCTION AT EVERY AGE.
FORGETTING is the plate of ice cubes that gets in the way.
This isn’t about behaviour or a lack of responsibility or willingness; it’s not about laziness or a lack of caring. And it is most definitely not deliberate. People with FASD forget what they want to remember, what they need to remember, what they are DESPERATE to remember… all day, every day.
For adults, who are expected to do all this without support, memory is the job interview you forgot a week ago; the burned food in the oven; the bed you meant to make, laundry in the machine from days ago; a teachers’ meeting you missed or the Pro-D day you forgot, but took your child to school; it’s being on time (itself a whole other issue!); paying bills, meeting obligations when you are supposed to; it’s knowing what you did or did not do, what you need to do, and when; it’s remembering what you look like; to take medication; and when (or if) you ate. It is LITERALLY everything in your life.
And the worst part for many of us… is that as soon as someone reminds us… we know we forgot… and that can make a person with FASD feel stupid… and that can make them act defensively, or badly. Not remembering can ALSO make us deeply insecure because we have no choice but to trust what someone else tells us, and our experience is that we cannot always trust what others say and are taken advantage of. Sometimes we forget what we forgot but not why it’s important which makes us look even worse.
In the end, when you have FASD, the ice cube falls off the spinning plate and you are left with a cold hand… an imprint of what used to be an ice cube but no proof of what was there… just a vague sense… anyone can fill in the missing piece… if you don’t remember, anyone can say you were holding an ice cream and you are left thinking “it must have been an ice cream” because you do not have any proof it wasn’t.
And sometimes… all the melted pieces land in one puddle on the ground, and, in time, re-freeze into something solid again… BUT… NOT the same ‘something’ as before… so still unreachable and still unusable.
Think about how extremely vulnerable to others this makes a person with FASD. Memory slips in and out; its use is never reliable and never dependable.
And its lack is NOT an excuse. It is what gets in the way of ALL the desire and motivation we have, and we have LOTS of that until it gets squashed flat into the ground.
Because while everyone makes mistakes, not everyone pays the same price.
And… please realize: those with FASD who are the most in need of memory supports are those who are least likely to be able to use them effectively and consistently… why? Because you need to remember to use them!!
ANXIETY
Anxiety is like being trapped in an Escape Room game played in the dark, being unable to use (because you are not allowed to or don’t have one) a cheat sheet to solve the puzzle that turns on the lights and unlocks the door. Maybe not even knowing what the puzzle is to start with; forgetting half-way through what it was you were supposed to be doing; being without night vision goggles or a flashlight that could help you to find what to do next; not having a partner in the game to work with; not being able to find the door and knowing the time is running out to solve the puzzle. Knowing you are expected to solve the puzzle. Knowing you have to solve the puzzle. Knowing you must solve the puzzle. Knowing you are desperate to solve the puzzle. Knowing that if you don’t, something will happen but having no idea what, or where, or when or why. Desperately trying to keep the anxiety plate balanced because it is wobbling so badly.
SENSORY: The wild card that just makes everything worse!
Sensory input comes at you from all sides no matter where you are: touch, texture, smells, lights, sounds, movement, balance, no idea what your arms or legs might be doing, no idea where you are in the space around you. EVERYTHING bombarding the person with FASD, all the time, often at the same time, and you never know when or where so you cannot prepare. And what makes something attractive to others might just be what drives someone with FASD into a meltdown.
There are actually eight senses: six or seven that people think about. And the sensory serving plate (actually the eight different ones balanced on the largest plate) is (for many with FASD) the plates they find hardest to keep spinning and balanced, because some things don’t just slip off a plate slowly, a little at a time, or one at a time; sometimes, the plate doesn’t start to wobble first; it just suddenly (and often with what seems to you to be without any warning) spins out of control and flies across the room. It is really the FASD wild card.
And then there is your internal body sense, called enteroception… that 8th sense no one really thinks about.
This is really like a GPS for your body that tells you about how fast you are breathing, how hot or cold you are, if you are thirsty or need to pee, if you are itchy, if you are hungry (or full) if your heart is racing; if you are scared or anxious or tense, if you are feeling pain, things like that… all things that make self-regulation possible. If you can’t feel (or are not aware of) these things normally… how do you attach them to an emotion or what you need to do?? Enteroception is how the brain understands the sensations from the body and is critically important for self-regulation.
This sense can be out of whack much of the time even IF (and for many people it is a BIG “if”) the first seven senses are less of an issue, depending on where you are and what you need to do. All things that can overwhelm someone with FASD, especially in new or changing situations. You can, and do, go from one extreme to the other in what looks like an instant.
SENSORY OVERLOAD
It feels like you are like running through a car wash while stuck in the middle of a game of dodge ball using multiple balls, played on a bed of nails in a field of long waving grass, while 6 different CDs are playing all at once at top volume, with a strong or bad smell you can’t stand, all under the flashing, colored lights of a disco ball that refuses to stop spinning!!
It all depends on how the individual body responds to stimuli. And since everyone is different; what does not bother one of us will drive another one NUTS.
TIME MANAGEMENT: a version of the game “What Time is it Mr. Wolf?”
Well… when you have difficulty (as do many of us with FASD) how do you actually interpret time? If I need to be somewhere at 12:15… when do I need to start? When is “close” to 12? Or “around” 12? And how long does it take to get to work/school/grocery store? Like… what IS “how long” anyways?
Time is very abstract and the passing of time (the time that people say they “feel”)… well… what IS that? How do I know WHEN something is?? How does anyone know how long it takes them to do things? When things start and stop? How do I know if I am going to be early, or late, or “on time” for anything when I cannot estimate? How do I relate that lack of a sense of time to the clock? How do I navigate something that exists only as an abstract, only over space I cannot see?
Because when you think about it, time is crazy. Like one hour is 60 minutes. And one day is 24 hours. But a day is actually longer/bigger than an hour, but the number is smaller. And a year of 365 days starts on January 1st… unless it is your birthday and then it starts on the day you were born so you are actually the same age in two different years in a row. And on a watch you say that it is 3:15 but also that it is quarter past 3… but a quarter is also 25 which is money… and 15 and 25 are two different numbers but in time, they mean the same thing. How is that? And there are only 12 numbers on a clock but 24 hours in the day… so why do it that way?
And on the right side of the analog clock face… the number one is counted as a five. The number two is ten. The number three is 15, the number four is 20 and so on. Then you get to the left side of the clock face and the number seven can be either a 25 or a 35; the number eight can be a 20 or a 40 depending on before or after, and so on.
And how does “one” of anything in time relate to “one” in anything else? Because each is a different “one”… like one isn’t one. How does a bigger number equal a smaller number? Thirty days is one month, or sometimes 31, or even 28. Four quarters make one dollar. Twelve eggs is one dozen. One hundred centimeters is one meter.
Time is all a bunch of cycles of “how long” and “when”… but they are all totally different, so how can they all be the same thing? I know they are, but for many of us with FASD, we don’t understand how they are or how to figure them out. Things like a washing machine cycle, or the warranty on my watch, or the time it takes to bake a potato (like… in the oven? Or in the microwave?) or make dinner or walk to the bus stop; play a game; a swim lesson; a time-out; boil a kettle; a TV show; an appointment; a coffee break at work; paydays; bills due; a season of the year; a hundred different things like that. And don’t get me started on HOW each one is different even from itself depending on what changes; a bunch of more things related to numbers.
And then, what about the fact that you can’t stop time: it goes on no matter what, so they say. But… they do stop it all the time in sports: soccer, hockey, football and basketball games. They “stop the clock” for penalties, but we are not allowed to stop the clock when things go wrong.
Something I have learned that my Mom talks about with time, is that for most people, the sense of time is an anchor that exists over and across space, and places people in relationship to themselves, others and everything else in their environment. It is what allows them to know who they are and where they are and to remember and predict… so like an anchor, it holds them in place but lets them swing in a circle (that is why clocks and cycles are usually presented as round, I think). It allows them to swing from past to present to the future; from beginning to middle to end; from before to after; when, until, later, maybe, next, about, around, then, if. But when you have FASD, time is more like a straight line because it does not come from inside you because you are not anchored to the ground quite the same way; the past, present and future are not well connected. We do not feel time like others do because it is not an internal construct for us; we do not experience (feel) it internally even when imposed externally by others. And that is a big problem, especially if your memory is not good.
“What Time is it Mr. Wolf?” is the game that outlines life, breaking it into manageable pieces, of many different sizes (and sizes are all about numbers), so you know what is expected. But when you have FASD, you never quite know how to play the game because the rules are so intangible, and you do not have the good executive functioning skills it requires.
The NEVER knowing is so highly stressful and anxiety producing.
AND THAT is why the words “time management” are upside down because that is what it feels like much of the time!!!
CHANGING how something is done
Is like playing a game of Musical Chairs; when the routine (the chair that makes learning the music and following it possible) gets removed, the more likely you are to miss sitting on a chair altogether and falling to the floor.
If you don’t realize or understand a chair (routine) has been removed (changed), when there are more or different people (tasks) than there are chairs, you don’t get to sit on a chair and you are out of the game.
TOO MUCH TO DO: playing catch-up (too many things to do) feels like playing the game of Sorry!
Always feeling guilty and apologizing because, like the picture says, “if you are playing catch-up… then you are behind schedule”!!!! And think about this in terms of expectations.
RELATIONSHIPS: playing a game of Snakes and Ladders
different people, different positions; different authority; different responsibilities; different times; different places; different ideas; different expectations; different biases
Who is who? What is what? Where is where? When is when? How does it all work? And why????
As soon as you figure out what the rungs on the ladder are with different people, and how to climb them; you make a mistake and slide down the snake and have to start all over again or you have to figure it out with someone else.
Socialization can be a problem. It is also where a lot of bullying of people with FASD can (and does) happen. Sometimes it is obvious and sometimes it is subtle, but it is often there. And it happens in places where you would not expect that to occur, not just the schoolyard or workplace. It is common in adult health services, support services, where disparaging comments “surely you can…”, “well, you must/should know…” shut down communication. Many (even most) adults with FASD have very real difficulty with social relationships as they are so complicated and have so very many silent rules. What starts in childhood as a lack of friends or playmates just continues. Because all people make friends with those who are most like themselves, have things in common and share the same interests. And people of all ages with FASD often/usually do not know others with FASD. The question is… why don’t they? Because that is where we fit best and may be most comfortable.
It also goes to expectations… and when you look at what I said about different people, different ages; positions; authority; responsibilities; different times (there’s that word again); different places; ideas; expectations and biases: What do you do? Who do you do it with? When is it okay? When isn’t it? What is okay to do? Where can you do what? How does it all work? How is what you do at a one place different than how you interact somewhere else? Where can I just be myself and be understood?
FOLLOWING A SCHEDULE: playing a game of Battleships
Schedules don’t follow a schedule!! They tend to change from day to day, week to week and have differences every time (that word again!). There is rarely any stable consistency. They simply do not always work well, no matter what you think, and sometimes not at all, for many with FASD. It’s all guesswork most of the time for us, but our reactions look like and are so often interpreted as behaviour. The stress of trying to manage all the components of time, looking ahead and remembering are intensified. This is not about a lack of desire to do what needs doing; and everything to do with disability.
SLEEP: a game of Counting Sheep
No one is at their best if they are tired but imagine if you have FASD and you NEVER (and we mean NEVER) sleep well at the best of times, your sleep is always broken up into small segments and you usually get anywhere from 4 to 5 hours’ sleep a night if you are lucky.
Or, if you are one of those with FASD who once you are asleep, you simply cannot wake up.
And… regardless… can’t sleep; can’t wake-up… you are almost always tired… all the time. The impact on “behaviour” (I hate that word) can be significant.
OVERWHELMED… well… what can we say?
Ever seen or done the mentos mints in coke experiment? Or shaken a bottle of pop before you opened it? Things are just out of control and sometimes explode. And you will probably not know why since this isn’t a can of soda. Way too much going on… even if YOU cannot see it.
And all the plates are trying to spin, some are wobbling, some are sliding, some are bashing into each other, and some… just shatter on the ground…
People with FASD and particularly adults with FASD are constantly playing ALL the games with ALL of their different rules ALL at the same time… ALL of the time.
So…
PART TIME WORK
It bears saying with some emphasis… part-time jobs work! And work well! Most adults (not all) with FASD only work part-time. None of those of us in the ALC work full-time. None of us have ever been able to maintain a full-time job for reasons that should be obvious by now… every one of us has crashed and burned whenever we tried to work full time. And if the reasons are NOT obvious.… well then consider our game analogy this way:
Adults with FASD are constantly playing ALL the games with ALL of their different rules ALL at the same time… ALL of the time.
But the ALC are all able to (and do) work part-time in different types of jobs that work for each of us individually. No two of us work in the same type of job. And if we can, after all the difficulties each of the ALC has had in life; then so can many others with FASD at some point in adulthood. And please know: all the ALC come from the usual backgrounds of those with FASD; of trauma; of loss; between us, we have experienced all the negative things people talk about when they talk about FASD (foster care, school failure, homelessness, addictions, prison, loss of children, failed relationships, mental health problems, etc).
And part-time work is not about desire; it’s about reality. And that HAS to be (and IS) okay because it is the ONLY way to keep all those plates spinning, or at least wobbling without falling.
It always has been, and it always will be. The ALC accepts that because it is our collective reality and denial will not change what our brains cannot do. It has nothing to do with our willingness to work and work hard; and everything to do with disability.
ACCOMMODATION
It’s not really about how compatible a person might be for a set of job requirements… it’s more about how willing an employer is to deal with that incompatibility.
Because when you look at the things that make work difficult for adults with FASD… none of them are impossible to accommodate for in most jobs, not all jobs, but in a lot of jobs.
And consider this for a minute: shoe stores don’t just sell one size or one style of shoe; that is not how they stay in business!
Conveyor belt of ideas to think about
And… if you start with the end first (the job product) BEFORE you have understood WHAT the “brain games” are (the disability impact), how will you ever make it work for THIS person? Because as much as everyone might like it, there is NO one-size strategy manual that works for adults with FASD in any area, let alone employment. And we are not going to give you one. But there could be a right-size solution for the individual. Some thoughts to take into consideration:
- Job fit!! For most of us, by far the most important thing
- As much as possible, a focus on what the adult with FASD wants or likes to do; NOT just the only things you think are available, like dishwashing; look at making something they might not actually be able to do, doable in some different format (my sister said she wanted to be a vet, but she could not do the academics; what she really wanted was just to work with/take care of animals so she worked in the back of an animal hospital helping the staff).
- A focus on what they are good at
- A job that gives them a sense of purpose and a reason to get up in the morning because everybody needs one
- A job that creates a structure for the day; part of the Jenga tower
- Get creative and as one adult with FASD said “stop trying to force square pegs into round holes”; if the hole can’t be made square, find a round one.
- Most adults with FASD do not always need a job coach; certainly not an on-going one.
- They DO need individualized job specific supports and approaches that work for them; some short term and some need to be permanent. That is called accommodation!
- They can really use a job mentor, which is different from a job coach and very informal.
- They DO need the respect and the dignity that goes with being understood, accepted and valued and NOT being judged and found lacking.
And finally… these are some things we think, from our experiences, are worth paying attention to
- All adults with FASD are NOT the same; there is a huge range in how we are, how we act, how we function, how we look; what we can do; what we need support with; etc.
- Most employers… and their managers… have very little, if any, actual understanding of FASD. A training session, an online course; reading; does NOT make you “get it”
- And they only know what they hear, which is usually negative.
- They have little experience at all, and positive experience is just plain lacking; most adults with FASD do NOT tell an employer they have FASD simply because of all the negativity; the stereotyping and the fear of how that will change how they are viewed and treated. Everyone has biases; what they think influences what they believe and what they believe influences what they DO.
- And… duty to accommodate. How does that factor in? Because when an employer does not understand FASD as a disability because you are not in a wheelchair, or deaf, or blind, or obviously mentally handicapped… most employers just ignore it. This simply must change. 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 are valuable to the employer, you have dignity.
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