ADD, Aspergers and the ‘cannot-put-weight-on-foot’ syndrome

This is not a ‘medical theory’ or even an ‘expert hypothesis’,  just my own thoughts and ideas.  Still, I do suspect that ADD/ADHD and Asperges are both a type of ‘cannot-put-weight-on-foot’ syndrome:

Let us do a ‘thought experiment’…

You come to see your doctor because you can’t put any weight on one of your feet, and you want your doctors to help you. They run their ‘standard tests’ and diagnoses you with ‘cannot-put-weight-on-foot’ (CPWOF) syndrome.   You are told that predicting the success of the treatment is difficult, because different approaches work for different people.
Some people are lucky and the CPWOF syndrome goes away on its own – they ‘grow out of it’. For others, there is a variety of treatments they can try, hoping one will work.

They can try icing it – perhaps even using a brace to support it.

They might try hot baths in salty water, perhaps rubbing in some antibiotic ointment.

Some people respond well to pain medication. Or, anti-inflammatory drugs…

Or other ‘stuff’.

Or nothing.

So, let’s try cycling through the treatments!

By now, you may have guessed that the ‘standard tests’ are questionnaires to be filled out by your family, perhaps teachers, for their observations of how you walk. Pages and pages of questions like:

Does he favour his foot: all the time, most of the time, some of the time, a little bit of the time, never. Circle the answer that fits best….

If they want ‘hard metrics’ – you know, ‘scientific data’ – they may ask you to put your foot on a scale and put as much of your weight on it as you can manage. That will give them ‘a hard number’ to work with!

Of course, this diagnosis does not differentiate between the ’causes’ of CPWOF syndrome.   The syndrome itself is so fascinating, they want to take a ‘whole-istic’ (chuckle at their own little joke) approach to it and not get bogged down in the details of ’causes’. (Translation: they don’t know and don’t care.  They have a ‘name’ for it and a bunch of treatments to try, and that’s enough…)

To make a long story short – whether you cannot put weight on your foot because you sprained your ankle or broke your femur or got a rusty nail stuck in your heel – or, if your foot got eaten by some piranhas that somehow got lost and ended up in your bathtub while you were soaking in it – it does not matter. You have ‘cannot-put-weight-on-foot’ syndrome!

(I also secretly suspect that many immune system diseases and disorders, limbic system illnesses and brain chemistry imbalances are also one form of CPWOF syndrome or another…a ‘label’ hung onto a collection of ‘similar’ symptoms, regardless of their root causes.  I also suspect that this interferes with proper analysis of ‘problems’ where one set of root causes can present as a very diverse variety of external symptoms.  This then would, I suspect, prevent correct diagnosis and even preclude a search for any effective treatment…)

In other words, I think that diagnosing someone with ‘ADD’ or ‘Aspergers’ is like diagnosing them with a ‘headache’ – and treating all headaches as if they were ‘the same thing’, regardless of whether it is caused by migranes, having been hit in the head by a baseball, a tumour or having over-indulged in alcohol…or any other billion possible causes for a ‘headache’.

So, what is it that this ‘headache’, this CPWOF of Aspergers and ADD/ADHD is? Instead of ‘not being able to put weight on foot’, we  have ‘malfunctioning filters’.  But, I am getting ahead of myself…

In order to be diagnosed with Aspergers, one has to first be diagnosed with ADD/ADHD. As in, everyone who has Aspergers has ADD/ADHD, but not everyone who has ADD/ADHD has Aspergers.  Therefore, it seems reasonable to see if there ‘is’ some ‘common mechanism’ to both conditions which differs from ‘the norm’.

This, then, is my hypothesis:

Both disorders/conditions could be caused by a break-down/partial development/some interference with the same ‘system’ in our brain and which could be described as: fewer ‘filters’, less conscious control over ‘filters’.

The difference is that in ADD/ADHD, only the sensory filters are broken. In Aspergers, these also don’t work, but, there are others that are also broken. And this is what leads to more pervasive disorders, problems, challenges – whatever you want to call them.

What do I mean by ‘sensory filters’?

One simple experiment that just about everyone I know has tried in one form or another is the whole putting one hand into cold water, the other into warm water. At first, we will have strong sensations that one hand is ‘cold’ and the other is ‘hot’. But, as time goes on, this will be less and less – the signal will diminish in strength over time, until we will ‘get used to’ the temperatures. Then, when we take our hands out of the water and touch them to each other, we’ll be amazed at the temperature difference between them when our brain is telling us both are ‘fine’….

That is an example of ‘sensory filters’ at work.

More simple examples:

We feel ‘clothing’ as we got dressed – but we are not consciously aware of every bit of clothing touching every bit of our skin at all times while we are wearing the clothes.

We may hear the furnace/air conditioner is on when we enter a room, but, after being in it for a while, we hardly notice its noise in the background…

People often over-apply perfume, because after they have been wearing it for a while, they do not smell it as much and keep re-applying more and more, increasing the ‘dose’ in order to get the same level of sensory input reporting it.

This is how our ‘filters’ ought to function. And, most ‘normal’ or ‘neurotypical’ people have lots of these ‘filters’, in various strengths.

In ADD/ADHD people, it is as if there were way fewer of these ‘filters’. Instead of, say, 100 (from weakest to strongest), we might have 20.

Or 3.

Or just 2:   100% ‘on’ and 100% ‘off’!

(Not all people with ADD/ADHD will have ALL their filters broken.  Some individuals may have ‘fewer’ filters in one specific area, others may have fewer ‘across the board’.  And, for some, it seems as if the ‘filters’ existed – but were only accessible at some times while totally off-line and unavailable at other times….which would drive their teachers and parents absolutely nuts about ‘inconsistencies in behaviour’! )

So, if the filter were 100% ‘on’, people might be calling your name, the fire alarm might be on, but, since you are reading a book and the rest of your ‘filters’ is ‘100% on’, you honestly do not hear any of it.

The ‘neat’ thing – the one that made me think of this as ‘filters’ rather than anything else – is that you actually DO perceive the sounds physically. It’s just that the brain sticks the information that you perceived the sound into a ‘buffer’ – and leaves it there unless you specifically try to retrieve it. Then it is a toss up as to whether the buffer has been ‘wiped’ or whether you can access the info held in it.

My younger son, for example, would not react to sounds as an infant – sometimes. Not even the ‘flinch’ which babies are supposed to have (say, when we are getting to 8 months of age and so on) when a loud sound happens directly behind them. He had absolutely no reaction. Yet at other times he obviously found even moderate sounds painfully loud…

Now, when he does not respond to what I say – not even aware of me talking to him – and I get his attention, I can ask him ‘what did I say’. He says he doesn’t know. I ask him to’ re-play it’. He does. He can repeat it word per word perfectly.

Only after he repeats it does he comprehend it!

Weird, but true.

My husband has the same thing…..as does my dad.

With Aspergers, these same malfunctions with ‘filters’ – or, perhaps ‘missing filters’ also exist. But, rather than just sensory ones (that drive one to distraction at one point while make them oblivious to their surroundings the next moment), the filters on feelings and emotions and – hormones – are similarly not all there, or broken, or whatever.  (And, having problems with ‘both sets’ it is sometimes difficult to tell where the dividing line ‘ought to lie’…)

So, it is easy for Aspies to get ‘overwhelmed’ by emotion and adrenalin, because where a neurotypical (NT) person would feel a gradual rise in these, we don’t. The floodgates are either down – and we ‘appear cold, unfeeling and un-empathetic’ or they are all the way up and we are ‘out of control’.  Total meltdown.

Many of us learn to develop various ways of ‘shutting down’ as a self-protection from this overwhelming flood….because this flood is often accompanied with adrenalin flood (we panic from being emotionally overwhelmed, which releases the adrenalin…).

This is bad.

Not only does it shut down our brain functions like, say, thinking, it also leaves us physically ill from the overpowering adrenalin rush. We get clammy and shaky and icky inside and out.

And most Aspies really, really, really do not like this feeling.  A lot.

What many people don’t understand is that  it is not just ‘negative’ stuff that can trigger this reaction.  ‘Positive’ emotions and feelings are just as dangerous to Aspies and their end-result is just as unpleasant and uncomfortable – at times quite painful, physically!

So, as we grow up and try to cope with this world (!),  we try to learn how to avoid ’emotionality’, even on a sub-conscious level.

If you know people with ADD/ADHD and/or Aspergers – or if you happen to be one yourself – please, try to see your experiences through the prism of my little hypothesis.  Then, whether it ‘makes sense’ or not – or any other observations you might have about this, please, let me know through the comments.  Pooling our observations and analysis might, perhaps, help us help each other!

(Cross-posted at Xanthippa on Aspergers)

Aspergers and writing – sentences

Writing a sentence seems like a simple thing – just figure out who is doing what, and write it!  Right.  Except it is not that simple for an Aspie

This seems incomprehensible to many teachers, parents, and any ‘outside observers’.  How come an Aspie is fully capable of presenting a coherent, detailed explanation of something without any preparation, but when asked to write a sentence or two on that same topic, they are unable to produce one?  How come that when asked a question, an Aspie student can speak for 15 minutes, giving exhaustive, accurate answer, but will only put down a single word as a response to the same question on a written test?

It does not seem credible – to the teachers or parents – that this could be possible.  ‘Just write down what you said!’ tends to be the response/command/advice, but it just does not work like that.  I do not know how or why, but I have seen it and experienced it.  Needless to say, this only leads to very high levels of frustration among both sides…

Many professionals in this field are studying this, and doubtlessly, there are many excellent theories about why or how this occurs.  I do not attempt to address that here – I just hope to look at the mechanics of how this can be overcome… at least, a tiny little bit!

First, the way language is taught is terribly important.  It can mean the difference between practical illiteracy (at least, in the ‘output’ phase) on the one hand, and ‘functionality’ on the other.  How can this be so?

Aspies tend to like to follow rules.  Perhaps not everyone’s rules, perhaps they have a lot of difficulty decoding social rules, but – once a rule is understood and accepted, Aspies tend to derive comfort from adhering to them.  This is true for language.

It is unfortunate that the current ‘model’ for teaching English (as a first language) in much of North America is the ‘whole language’ approach:  this is the hairebrained idea that children will simply ‘absorb’ the rules of English when they are ‘exposed’ to them.  Perhaps this may work for a small minority of kids.  It certainly makes the teaching less laborious, because the teacher does not have to actually teach grammar, correct grammatical errors in written work (we are looking for substance, not grammar…).  And, much more often than I would have liked, I have come across teachers who are not even able to follow simple rules of grammar themselves!

This is a major problem for Aspies:  the rules are difficult to ‘absorb’ – especially when the teacher does not use proper grammar….  Constructing a proper sentence then becomes quite bewildering.  Yet, many Aspies can master written language quite well, so there must be something else going on here.

Perhaps there is a different part of the brain that controls verbal and written expression.  Or, perhaps many Aspies consider things that are ‘written’ to be ‘permanent’ – and therefore there is a much higher level of perfection that is required.  I have asked many adult Aspies who have tremendous difficulties writing things, and there seem to be striking similarities among most of them.

First, the idea.  That is the easy part.  In other words, the Aspie knows what he (the friends I questioned were all men) wants to write.  The problem comes in the how to write it:  they will put a word down, wonder if it is the most accurate one – and start ‘googling’ it. Wikipedia probably has some pretty good definitons of this – you should check it…. 

The problem with Wikipedia

OK, refocus.  Now you have the correct word.  So, how do you fit it into the sentence correctly?  Is that the right grammar?  Perhaps you should ‘google’ that….

 

OK, refocus.  You now have a noun and a verb, most likely in the proper grammatical structure.  But it is nowhere near sufficient to capture the meaning…  Perhaps it is time for lunch.

And so it goes.  Not very productive, but, eventually, some semblance of a sentence will be produced.

So, how can one help a child learn to overcome this?

My personal exerience gave me some insight.  I was lucky enough to be able to reproduce patterns – sound patterns and picture patterns.  This helped me get selected for a language school when I was 8 years old… and while I was struggling to write basic sentences in my native tonngue, miraculously, I did not experience the same problem in the new languages.

Perhaps advice from a teacher helped: 

‘Do not write what you want to say, write what you are able to say!’

With a limited vocabulary of less than 50 words, and only a rudimentary rules of how to construct a sentence according to the new language’s rules, the prospect of ‘writing a sentence’ became more managable!  With only a limited number of permutations possible, selecting the best possible combination of them which most effectively gets the point across became easy!

When my older son got to a point in his schooling where he was expected to construct more than just simple sentences, he started having a problem.  Trying to help him, I realized that he only had a very basic (and somewhat flawed) idea of how English grammar works….

Solution?

Basic textbook of Latin!

The reasons for selecting Latin were many:  from loan words down.  But the most important reason was that the Latin grammar was very explicitly spelled out – and that the endings of the words would change, depending on what role in the sentence that word played.  This is very key – it reinforces the rules of grammar, and helps figure out how to use them to construct a sentence.

My goal was not to teach my son Latin.  As a matter of fact, we spent no effort on memorizing vocabulary – we only focused on learning the rules for ‘flexing’ the words:  what does a particular ending mean – and what it tells us about the role this word plays in the sentence.  This skill was then easy to transpose into English sentence composition.

Yes – sentence composition.  Because that is how it has to be approached – this word is the subject.  This word describes the subject.  This word is the verb.  This word describes the verb….  and so on.

For younger kids, it might help to use tools:  on small, rectangular pieces of card paper, print a limited number of words related to the topic the child needs to write a sentence about.  Depending on the kid, start with 20-30.  Separate them according to their role in the sentence – it migh be very helpful to colour code them.  Nouns in one colour, verbs on another, pronouns, adverbs…so on.  Or, just separate them into piles. 

Then, when the child needs to write a sentence, let her/him pick out the right words and ‘build’ the sentence out of the ‘card words’.  Since only a very limited number of words are available, the child must be told the task is not to ‘answer the question’ – because that might seem impossible!  Explain to the child that the goal is to ‘build the best possible answer out of these words.  It will not be perfect – and it is not expected to be! Make it a game to try to create the best ‘best fit’ that could be done from this set of ‘card words’.

Once the sentence is created, the child can copy it – and use it as the answer. 

The word-pool can be altered, based on the topic. It can be increased or decreased, based on the child’s needs:  the more difficulties, the fewer words to pick from.  It is a tedious process, but it does work – or, at least, it worked in several instances when I have used it (not just with my own kids). 

My personal opinion is that it teaches several things: 

  • By limiting the pool of words, it makes ‘finding the right word’ easier – by making it OK to settle for the ‘best available word’.
  • By forcing the use of ‘different types’ (as signified by colours/piles of words, based on role played in the sentence) of words, the Aspie reinforces the proper use of grammar
  • This exercise builds one’s confidence in their ability to form sentences – which is much more important than most educators acknowledge.
  • Perhaps most importantly, it creates the habit to ‘write what you can, not what you want to’

It is not perfect, but this might help overcome the obsessive need to only write an ‘impossibly perfect’ sentence…

Learning to write is not easy for people with Asperger syndrome.  There are many obstacles in  their way:  from mechanical difficulties, to ‘holding onto their thought long enough to write it down’.  Add the desire for perfectioninsm in written expression…. 

Following the suggestions of professionals who know the child is the best way to help him or her learn to overcome the difficulties which are part and parcel of Aspergers.  Yet, if nothing seems to work, frustration levels are building, the child is unhappy… I know there were times when I would have tried just about anything!  And letting the child help sort the words just might take an edge off the frustration.

Aspergers and ‘painting music’

Over the last few decades, there have been very big changes in classroom attitudes – at least, in this part of the world.  Many teachers are of the opinion that academic rigour stifles self-expression, and in an attempt to foster creativity in their students, they have systematically dismantled structured teaching.

This might work for some students.  Yet, many students do not do well in this new environment, do not learn well using this new method.  Yes, I do focus on kids with Aspergers, but they are not the only ones who are having difficulties.  Many ‘normal’ kids find this ‘unstructured’ method of teaching makes learning more difficult.  The Aspie kids get completely lost in it.

Let me give you an example:

During a series of grade 3 art classes, the teacher played different types of music.  The assignment was to ‘paint’ the music while the students were listening to it.  I thought this was the height of idiocy:  no skills were being taught, and precious school time was being wasted.  But it was explained to me that I was being boorish, that this ‘exercise’ is scientifically designed to stimulate different areas of the brain to synthesize information, which is what kids at this age need more than anything else.

Please, do not misunderstand me.  I don’t have anything against art classes in general:  to the contrary.  My mother teaches art, and I have a deep love for it.  However, I think that kids actually get more enjoynment out of art if they are actually taught about it.  They will derive pleasure from drawing if some of the rules of proportion, or different  fun techniques are broken down into steps for them, so they can master the skills.  Once they have understood the rules, it will be more fun to ‘bend’ them to express their own artistic talents (and no, I don’t mean after years of study….rather, teach a specific skill, rules that govern it, and how to bend them and have fun with art).

Well, my son was in this particular art class.  He was in it because that teacher had gone to receive specific training on how to teach kids with Aspergers.  And then she got angry with an Aspie kid for ‘not being able to paint the music’ he was listening to????? 

Of course, what she was expecting was just non-sensicals colourful swirls – but she would never tell the students that.  With a prim smile, she insisted they ‘paint what the music makes them see’.  Questions of ‘How?’ were met with ‘That is up to YOU!’

Just before setting marks onto the report card, she called me to warn me that my son is about to fail art…  Let’s just say that I found it somewhat difficult to keep my temper.  (The problem was the frustration he experienced in being asked to complete a task he did not have the tools to perform, asking for help and being denied it, then penalized for failing by a bad mark.)

I explained to her that in that case, by her own standard, my son should have received an A+ for his artwork:  the music did not make him ‘see’ anything, so that is what he painted.  Or did not paint.  Either way, the result was accurate, and that he made a bold artistic statement by leaving the page blank.  Quite literally, he ‘drew a blank’!  In other words, I tried to ‘out-pretentious’ her.  It did not work – I’ve never been very good at it. 

However, the teacher said that if my son does 3 of these paintings and hands them in by Monday, he will not fail art.  So, we were left with the task to ‘paint music’.  My son and I talked about it, and it became clear that his frustration level was higher than usual.  But I came up with a solution I am still proud of!

Selecting a Physics textbook which had a good, simple explanation of ‘sound waves’, we read it over together and I explained all the diagrams to him.  Now, here was ‘sound’, represented visually!!!!  We were making progress.  Yet, many Aspies are sticklers for rules – my son could not paint the different types of music the same way!!!  And I was ready…

Rummaging around in the basement, I dusted off our old logic analyzer and brought it up.  Then I set up the display to emulate an oscilloscope, and we played the different types of music.  It worked!  The different sound waves made the oscilloscope display different curves.  Lifting his brush, and dipping it into the green paint (the display was green), my son went and happily painted the different types of music!

His teacher was thrilled!  She told him she knew that if he tried, he could paint music!  He told her they were ‘music waves’ and that he saw them.  I did not tell her that he saw them on an oscilloscope screen – somehow, I did not think that would please her.  Why spoil her pleasure? 

Aspergers, drawing and art

Many kids with Aspergers do not enjoy drawing and colouring.  This could be due to the fact that many have less ‘handedness differentiation’ – neither hand has better developed control, so drawing (and eventually writing) is more difficult.  But there could be more to it than that.

Just as there seems to be a difficulty in translating thoughts into a written form, some Aspies experience a similar difficulty in translating visual images into a drawing.

This is strictly my own observation, and I am not aware of a connection between these two aspects in any professional literature, but I cannot but wonder if this is a different expression of one underlying problem.  Let me describe it a little bit.

My dad has never been diagnosed with Aspergers – nor has he ever sought an opinion on the topic.  However, I do see some similarities between the way he, my sons and I processes information – at least, in some instances.  When we were trying to figure out this whole ‘Aspergers’ thing, he shared with me something that happened to him, when he was about 10 years old.

Standards and teaching methods in school were a little differen in his days, and teachers were more authoritarian.  During an art class, a substitute teacher said they were to draw a picture of a pig and hand it in at the end of the class.   A simple assignment – right?  Except that nobody had ever taught him how to go about drawing a picture of a pig… and my dad simply could not figure out how to even start.

He sat there, for the whole period, without making a single mark on his sheet of paper.  The teacher was not pleased.  As a matter of fact, he got very angry.  My dad was smart and had high marks, but he was not the most compliant of students.  The teacher would not believe him when my dad said he did not know how to do draw a pig, and concluded this was simply defiance…  and to report to him after school for detention.

The detention?  My dad was to sit at his desk until he drew the picture of a pig, then he was to bring it to the teacher’s office.  Once that was done, he could go home.  But try as he might, he simply could not resolve the image of a pig into its componenet parts, which he could then draw.  So, he sat at his desk, for several hours.  Finally, the janitor took pity on him. 

He, too, found it hard to believe a kid could not figure out how to draw a pig, but when he saw my dad just sitting there, for hours, he took a plain piece of paper and a pencil, drew a rectangle for a body, a triangle with a dot for the head and an eye, four sticks coming out of the bottom of the rectangle for legs and a curly spring on the back for tail.  “Here” he said.  “A pig!”

This was a revelation to my dad!  He easily reproduced the simplified ‘pig’ onto his sheet of paper, brought it to the teacher, and was allowed to go home.  

I have since met several people who do not naturally have an ability to break down a visual image into subsets, individual lines, which could then be put onto paper.  However, they can be shown how to go about it, and learn the process – just that to be effective, this process of learning needs to take place when they are older than when most kids learn to draw. 

Similarly, many Aspies do not have a natural ability to break a thought into constituent parts that can be written down – we start looking up words, checking spelling and grammar, wonder about better ways of saying it…. and end up producing very few actual words…  Yet, like with drawing, this process can also be learned – and it, too, will only be effectively learned at a later age than that of non-Aspie peers.

Could it be the same ‘prioritization’ or ‘orderig’ of ‘stuff’ that is causing both effects?

Another connection between them:  once Aspies ‘learn’ this process, they do not simply ‘learn’ it, they often ‘master’ it, and become better at it than most other people.  And yes, some do become successful writers or artists… Eccentric, yes, but successful.

Is this simply ‘overcompensation’?  Or is there something else at play here?

Aspergers and writing – holding on to that thought!

Different people are affected by Asperger Syndrome differently, and to varying degrees – it is more of a ‘continuum’ than an ‘on/off switch’.  I am by no means an expert – but I have some experience in living with it, and raising kids who are also Aspies.  The following will not work for everybody, but it did work for one of my kids.  Perhaps it may help another family, too – if not to improve skills, then at least to build an understanding.

Many Aspies are quite capable of speaking their mind, but have difficulty writing.  Previously, I have noted several factors that could be at play.  Here, I would like to look at only one of these:  how to hold on to that thought long enough to write it down.

Whether it is some problem with short-term memory, a non-differentiation in the prioritization of our 7-or-so ‘attention slots’, or if it is due to different causality, the practical result is that many Aspie kids say: ‘there are so many ideas swirling in my head, I cannot hold on to one thought long enough to write it down’. 

This problem could be related to ADD – a condition which often occurs along with Aspergers.  And it is something that can be incredibly frustrating.  The child knows the answer, but there is some kind of a breakdown in the communication between the brain and the hand…  To an outside observer, it looks like nothing less than obstinance!

The earlier it is discovered that a child has this aspect of Aspergers, the easier it is to correct.  As is so often the case, the smarter the child is, the longer they can ‘mask’ the problem by ‘leveraging their core competencies’.  (Ooooh, I do love it when I talk bureaucreteese – while I don’t have to!  I amuse easily.)  This can be a good thing:  if the problem is mild, this can be a way the child ‘owns’ the problem and develops perfectly tailored coping mechanisms.

My son’s problem, however, was not mild.  Even though he did well, hiding his problem for quite a long time, half way through grade 2 he simply ‘got stuck’.  And even when we discovered it, it was completely new to us.  Nobody seemed to understand why he would sit at a desk for an hour and manage to write less than 3 words.

In grade 1, he tackled his inabiltiy to learn to read – and leapfrogged his peers, reading ‘The Lord Of The Rings’ on his own during the summer.  He had mastered the mechanics of forming letters – this also had been a struggle in grade 1.  (He had gone to a Montessori pre-school, where he learned to iron washcloths instead.)  So, we had been optimistic that we were ready for grade 2!

And now, this – to us – unprecedented and inexplicable inability to write even the siplest sentences.  The teacher was great, and even took a seminar to see if she could learn about this – but by this point, we had never even heard the word ‘Aspergers’, or what it means.  It took us a long time, but we finally worked out a way to get written work done.

  1. My son and I would sit at the table, he would read the question, and say the answer out loud.   
  2. I would write the answer in large, clear letters on a notepad. 
  3. I would place the notepad on the table, and he’d get ready to write his answer.
  4. Now I asked:  “What is the question?”  – He’d read it out loud again.
  5. “What is the answer?”  –  He’d say the whole answer again.
  6. “What is the first word?”  –  He’d repeat it.
  7. “What is the first letter?”  –  He’d repeat it and write it.
  8. “What is the second letter?”  –  He’d repeat it and write it.
  9. “What is the third letter?”  –  He’d repeat it….

And so on.

Except that, at the beginnig, by the second letter, he would forget what it was.  And what the word was.  And what the question was.  So, we’d go back to reading the question, answering it, reading what he had written, and forcing him to realize what the next letter was.  

It was hard, and it took a long time.  Especially in the beginning – it could easily take us an hour to write 4 sentences.  But, he was doing it!  And over time – long time – he built up the capacity to hold on to more and more information, before needing to go back and re-checking it.

At first, on the advice of the teacher, we had instituted a ‘reward system’.  She was one of those teachers who really care – and I don’t know if I could have done it without her.  And, because I did not give my kids too many sweets – she suggested that some very small candies or raisins could be used as ‘earned rewards’ – say once a sentence or a particularly long word is completed.

The reward system was working.  Not that it would make the work easier, or that it would motivate him to write faster.  It did not work in that way.  But, as hard as all this was on me, it was even harder on my son:  he had just spent a full day at school – good and bad – and now we were sitting at the table for hours, working.  That is a lot for a 7-year-old!  The ‘reward’ was exactly that – it allowed him to graphically see his progress!  As my pre-measured ‘pile’ of ‘rewards’ on the table was shrinking, so was the amount of work still ahead of him.

That is something neat:  Aspies like rules.  They are much more likely to reach their potential in a highly structured environment, where the expectations are very, very clear.  In a way, the ‘rewards’ were a little bit of ‘structure’, a measure of how much work is still expected from him.  Anyhow, he seemed calmer, and more ‘focused’.

Soon, I started finding the ‘rewards’ in his pockets when I would do laundry.  This puzzled me – so I asked him about it.  His answer?  “Well, I don’t really like to eat when I’m doing my work, but you looked so happy giving me the treats that I did not want to spoil it for you!”

After this, we switched from edible rewards to other non-edible ‘markers’:  marbles, poker chips, pebbles, or even coins from his piggy bank.  He got to pick what we would use that day, and helped count out the ‘markers’.  Once he had earned them all, we would put them back into their baggie, and into the ‘marker box’.  He liked that.

It was slow going.  After about a week of this, we both noticed that we would almost fall into a rhythm of question-answer-write.  And that really was the point when we both noticed beginnings (very, very beginnings) of progress!  Just to vary it – for fun – we started calling it out in the rhythm of that song soldiers sing to keep beat, with the question-answer called out loudly. 

My son loved it, and called it ‘writing with shouting’.  He explained to me that when we were ‘writing with shouting’, the sound scared away the other thoughts, so he could sometimes hold on to three or even four letters before needing to go back to see what word it was he was writing!  He would be excited by this, and ask for us to ‘do the writing with shouting’.

Excited by this progress, I reported back to the teacher how well we were doing.  Perhaps I was a bit hahazard in how it all tumbled out of me, but I was very excited and happy to tell her.  I did not get the reaction I expected.  She looked aghast, and started crying.  When I asked why, she said: 

“The poor child!  He’s trying so hard!  And you took away his treats and are shouting at him instead!”

I explained better.  So, why exactly does ‘relief’ make people want to punch my arm?

In conclusion, it did work – but it was a long, hard road.  The performance level at school rose faster than my son’s skills, so it could be downright discouraging at times.  But, we stuck with it – there was about a 3 week period when we worked 3-4 hours a day at it, and there was not a single day when we did not spend at least 2 hours ‘writing’ – without or ‘with shouting’!  And we beat it! 

Eventually, we would not need to go letter by letter.  Instead, we went word by word.  We got there during grade 3….  But the habit of having me write the answers down, and then writing them down himself with the notepad in front of him ‘for when he needed it’ – we continued that until the end of grade 5.  And, if the schoolwork really piled up, I would sometimes (with the teachers’ permissions) script for him.  One needs to be flexible when the workload is greater… and other learning must not be neglected.  Eventually, his writing skills have caught up with the amount of work required of him at school.   

It took a ‘few’ years, but we beat it!  It was not the last problem with ‘writing’ that we encountered, but it was by far the most effort-intensive to overcome.  But it was worth it!

Aspergers and ‘hearing dyslexia’

This is another one of my very personal looks at living with Aspergers – both as an Aspie, and as a parent of Aspie kids.  While doctors and psychologists can tell us a lot about Asperger Syndrome, it seems to affect different people differently – even siblings can have incredibly different ways in which they are affected.  Not only does each person’s underlying personality determine the best (and worst) ways of handling it, there are often many physiological conditions which occur along with it and affect the skill-set available to be drawn upon.

One of the conditions that often occurs along with Aspergers and/or ADD is dyslexia – I know that when I was learning to read and write, I had a lot of trouble with it (and, to a very small degree, I still do).  What surprised me, however, was that just like people with dyslexia see letters either reversed, or in the wrong order, some people hear sounds ‘jumbled up’ in much the same way!  The technical term for this is Auditory Processing Disorder (APD), but I find it easier to think of it as ‘sound dyslexia’ or ‘hearing dyslexia’.  Apparently, this condition is not easy to test for, and many doctors do not even think of testing for it….yet it can have very major impact on the development of a child learning language for the very first time – whether neurotypical or Aspergers or Autistic.

Just like people with dyslexia can see letters reversed, or in the wrong order, people with APD can hear sound within words ‘reversed’, or lasting the wrong length of time so several sounds become superimposed over top of each other and very, very difficult to ‘separate out’ and understand….especially when one is just learning that different sequences of sounds can actually carry different meanings. 

Please, imagine that you have this – not correctible by a hearing aid, because the problem is not mechanical, but by the way sound is processed in the brain.  Because you cannot effectively (or reliably – the problem is notoriously intermittent) differentiate between words or phrases, it is very difficult to ‘catalogue’ or ‘make sense of’ sounds and their associated meanings.  Now add to it the Aspies’ inability to comprehend facial expressions, tone of voice or body language.  Frankly, I do not know how these young children can make any sense of the world about them at all!

How to overcome this?

One has to work within the child’s interests and strengths.  It is my hope that sharing what worked for our younger son may help you develop strategies which may work for yours.

When our younger son had problems learning to speak, it did not look to us like a problem.  Instead, it looked as a willful behaviour:  we were told he was refusing to use language in order to manipulate us, the parents.  It was a call for attention, we were told. 

But, that just did not ring true to me.  While we would read him every evening, and while he had our full focus and attention, he would still be unable to follow even the sipmlest stories.  He loved counting picture books with a number and that ‘count’ of objects.  That he could follow, and would lift the correct number of fingers – even try to say the numbers.  Sometimes, he even liked ‘word’ books – ones that showed a picture of an object and had the word for it written beneath the object.

But the moment we tried to read him even very simple stories, we lost him.  He would fidget, climb, jump, and generally do anything to demonstrate his complete lack of interest.  Thinking he wanted more of the attention focused on him (as we were told this was attention-getting behaviour), I would start telling him stories.  This way, there was no book and he was my sole focus.  Same reaction.

Eventually, he got interested – but on a very different level.  Accepting the ‘book routine’, he started picking out letters, one at a time.  The joy on his face as he would yell over top of my voice (as I was reading):  “A!!!  A!!!  A!!!”  I would confirm that yes, that was indeed ‘A’, and tell him how clever he was to have recognized it.

He’s settle down and look interested.  But he was not interested in the story.  No, because I would barely read another paragraph when he woud get excited again:  “D!!! D!!! D!!!”  Again, I would praise him, and try to resume reading.  But, it was not a ‘relaxing time’ that would get one ready for bedtime…

Eventually, I gave up reading him stories and broke out the ‘Alphabet books’.  I had thought he was too young for them, but if he loved reading the letters, I whas happy to oblige him.  For the first time, he was making ‘human’ sounds, one letter at a time!  And at this point, I saw that as a reason to celebrate.

We also added ‘bathtime’ to the fun.  He loved his letters, so I got soap crayons and we had great fun using the white ceramic tiles on the wall by the tub as our canvas!  I would let him pick a letter and then write every three-letter word which started with that letter.  As I would write them, I would read the letter, then the word!  And, surely enough, my son would read each letter with me.  B-A-T.  BA-. BAT.

Miracle of miracles:  he learned to speak!

Of course, he would NOT EVER repeat a word until he had learned what letters it was made up of, how it broke down to syllables, and how it fit together.  I suppose he was the only toddler I had ever encountered who had learned to READ before he learned to SPEAK!!!

Now, he has a little lisp when he speaks, but he has an above-average vocabulary.  

Another factor, which was happening at this time, and which I think was incredibly beneficial to our son as he tried to decode the mystery of communications, was his interaction with our dog.  Good natured and well trained, he was also very intelligent – and showed incredible patience with both the boys.  And while any pet will be beneficial, a well trained dog in the home can be very valuable in a situation like this. 

Why? 

Because the communication lines are so very clear.  Our dog was trained to obey a limited number very distinct-sounding commands, accompanied by hand signals.  In addition, the dog’s response to these commands was consistent and predictable.  His overall body language was also a much ‘simpler’ communication than the ‘human’ type.  To a young person who is having trouble understanding the underlying rules of communication, this can just be the key to unlock the mystery. 

We did not ‘get’ what was happening, and thought he was just ‘playing pretend’ when our son began to immitate the dog’s actions when we would give the dog a command.  And since the dog loved to ‘practice’ his commands for treats every day, I switched the ‘treat’ from a dog bicuit to an animal cracker….and let them both practice together. 

It may seem silly to people who are not ‘dog lovers’, but many kids love pretending to be ‘the dog’.  It is partly a game, and partly to see what reaction this would get.  And since I thought it was fun, and I was happy that he was interacting, I was delighted.  I would say ‘Sit!’ – and both boy and dog would sit!  I would give them a cracker each, they would happily eat them up, and look to me for the next command!  And he was happy – he finally understood some ‘stuff’!

Perhaps not every child would respond in this way, but then again, my guy is one of a kind!  Yet, I do hope that his story might help people understand that kids who ‘seem’ to be ‘manipulative’ or ‘acting out’ might not be doing that at all.  They may simply not understand what is going or around them, and be trying ‘weird’ ways to make sense of them.  And they may also be very frustrated….

But if you can find the key that will unlock the mystery, they will learn!  And they will be much, much happier – it is rewarding for everyone!  Even the dog…     ;o)

Aspergers, schooling and frustration

Many people with Aspergers have been treated as ‘stupid’, or – and this is the ‘teachers’ favourite’ – “Your child is co clever, if only he/she would apply himself/herself, he/she could do so much better!”  As if the world were not frustrating enough without such patronizing haughtiness!   

There are very many ‘things’ going on – and many will display themselves as various ‘learning disabilities’:  dyslexia and/or its auditory equivalent, sequencing difficulties, social rejection + + + … and an ever growing frustration.  And yes, this frustration can be crippling – it can ‘freeze’ the mind which is capable of complex reasoning, yet treated as an idiot because one can’t seem to express it!  

In North America, school tests are all written – a ‘double jeopardy’ for Aspies.  First, understanding the scope of the question is a challenge in itself.  Is the answer supposed to be one word, one sentence – or a paragraph?  During written test or exams, one is not supposed to speak – and so cannot ask and find out how big the answer is supposed to be.  Then, it is incredibly difficult for Aspies to write their thoughts down in a consistent, comprehensive manner.  The mechanics of writing itself are hard enough, formulating answers and then remembering them long enough to write them down is something that will take most Aspies years to master.  This difficulty in written expression is kind of the ‘hallmark’ of Aspergers!

I know of a child who was slipping into a deep depression and getting bad marks in school.  After a series of tests, it was shown that he was able to express himself so badly (on tests), he scored in the lowest 25% in general cognitive tests for his age-group.  (That means that 75% children his age were able to write a better answer.)  Yet, in oral testing (and with guidance – letting him ask questions so he assured himself he understood the question and how detailed the answer was supposed to be – and with no time limit), he was found to score higher than 95% of his peers!  He was able to solve math problems from grade 8 exams, yet he was almost failing grade 2!

Can you imagine the amount of frustration this lead to?  That disparity between one’s actual ability, and one’s capability to demonstrate that ability to others can lead to very, very destructive self-image.  Frustration, shame, self-loathing….not really something that will help make things better.  And because it is more pronounced when they are young and have not learned to compensate, early on into their schooling, many Aspies figure out that even trying is pointless.

The key question, of course, is:  so how to fix it? 

The simple sounding answer is:  by exercising the brain.  The latest research on neuroplasticity suggests this can be done, with great results.  In the next few posts, I will try to describe the exercises that I have seen work – though not all people respond to the same way to all the exercises.  I guess that even despite being Aspies, we are all individuals!

And speaking of being individuals:  I just came across a neat article.  Perhaps forms of self-expression like these futuristic tattoos just might help people with Aspergers read the emotions of others!  Perhaps a little silly, but worth the read!