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Welcome to the website of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) Australia.

THINKING ABOUT BRAIN IN ANALOGIES FROM THE PERSPECTIVE OF FASD CHANGEMAKERS – Part 1 of 3

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.

CJ Lutke was diagnosed with FASD when she was a baby and now, as a member of the Adult Leadership Committee (ALC) of the FASD Changemakers in Canada, is a well-known speaker on FASD. She has presented at, and participated in, many conferences, seminars, training sessions and other events for many years, sharing her experiences and what she has learned living with FASD. Read more of CJ’s blogs here

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