Please ensure Javascript is enabled for purposes of website accessibility
Welcome to the website of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) Australia.
Search
Close this search box.
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 2 of 3

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 a 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 if 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 its 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 – (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; its 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!!

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

Share this post via one of the above social media platforms :)

Thank you for helping us create more awareness. 

Leave a Reply

Your email address will not be published. Required fields are marked *

Follow Us

Archives

Pin It on Pinterest

NOFASD Australia

Bridge the gap and Share this post via your chosen social network.