Resources

CVIs & Behaviours Presentation

Talk 1 (of 3) text (of scripted talk), slides and audio link.

Slide 1

Hi, I want to start with a little bit about me - I am not a teacher, doctor or therapist of any kind, but I do have a lot of experience with CVIs. I give talks on CVIs, and combine what I have learnt from my son and others I know affected by CVIs, with the theory I have needed to learn to write for the CVI Scotland website.

So, first and foremost, I am the mother to a beautiful boy, who has CVIs - lots of them, I will come to that later. I also started the charity CVI Scotland three years ago and am one of the main writers in the team. We work very closely with our sister charity and hosts today, the CVI Society, of which I am Associate.

Slide 2

I am going to break this session up into three short talks, with time for questions in between - because understanding the relationship between CVIs and behaviours requires an understanding of lots of other things first. The first thing, in this talk, will be to understand the nuts and bolts of how we learn, how we get that stuff called knowledge into our brains - as behaviours are learnt. Next, in talk 2, I will be looking specifically at how CVIs can affect how we learn, and looking at the role of CVIs in the development of behaviours - and most importantly, in talk 3 - what we can do about it.

Slide 3

How we learn is a process of experience, memory and recognition.

This process is critical to understand in just about everything related to CVIs. To demonstrate we will use something nearly everyone can do - sit on a chair. Those of you with children will remember teaching your child to sit unaided - initially they would have needed a lot of support, but over time, as they got physically stronger, and their balance improved, they were able to sit safely on their own. We all went through a similar process, but most of us would have been too young to remember.

The experience part of learning to sit on a chair is the physically sitting on a chair, in real-time, as you are now. The first time you do anything there is no memory, so you only have the experience. That experience is remembered - so the second time you sit on a chair, you have the real-time experience plus one memory, and that memory becomes stronger every time you sit on a chair, so the tenth time, you have the real-time experience and the benefit of a memory that has been reinforced over and over. And each time you sit on a chair, your brain will search for your balance and other chair sitting memories, and match them with what you are doing, to help you - and that is the recognition part of the process.

Maybe today you will meet a few new people, and later bump into one of them at the train station - you have only met them once before, with many others, and so whilst you have a single memory, it is not a very strong one, and you might do that thing where you half recognise someone, and don't want to appear rude, but also don't want to be approaching strangers randomly - but if you meet them several times, that memory becomes much stronger, and you confidently recognise them.

So that is how we learn

That is how we learn everything, from when you were a helpless new-born baby, to everything you can do now, you have LEARNT through the repeated process of

Experience - memory - recognition.

In addition to learning to sit, other things you may have learnt through this process are:

Slide 4

Travel - how did you get here - did you drive - do you remember your first driving lesson?

Washing, styling, dressing, applying make-up

Sitting, standing, walking - talking - language - the more complicated languages of body and facial expressive language

Reading, writing, typing, using a computer, using a phone

It's obviously an enormous list, but for everything, we started with a first experience.

This list has many things we take for granted, that those with CVIs can really struggle with. I know I personally took the whole learning process completely for granted, until I had to understand it for my son, who for a long time learnt very little.

If we go back into early childhood, there are other things we learnt, important things, particularly in relation to emotional development, that we don't remember, because we were too young - but just because we can't remember, it doesn't mean that they aren't still important and relevant to who we are today. Most important of all, thankfully for most of us, in our first year we would have learnt what being loved felt like, and nurtured, and cared for - and these early nurturing interactions are the foundations of our emotional, and subsequent behavioural development.

Think of that first important year for children with CVIs - where they were born with their CVIs or acquired them very soon after birth, what was that like? No lack of love, but for many I know, there was a lot of hospital interventions and appointments - from the perspective of the child, how might that first year be different, and how might it impact upon subsequent emotional and behavioural development? We will look at this in talk 2.

Back to Experience - Memory - Recognition

If someone - anyone - is not learning, we can look at that process. Conditions like dementia for example, can affect our memories, and without the memory, there is no recognition, meaning if a person's memory of faces has gone due to their condition, people cannot recognise those they know well, because as far as theirbrain is concerned, they've never met them before - as the memory is no longer there. People may get lost because they don't recognise where they are, because that memory of places may have been affected.

The recognition process is like a matching process, a bit like a game of snap where you match two cards. The experience and memory might both be there, but without the matching process, which is our process of recognition, we do not recognise people and things - as it the case with the condition prosopagnosia affecting recognising faces.

But we are interested in the experience bit, because CVIs affect that

Slide 5

So if I started talking in Cantonese, you could still hear me, but would not be able to make any sense of what I was saying so whilst I am perceivable, in that you can hear me, because what I am saying is without meaning (unless you happen to speak Cantonese) you do not understand, and will not learn, and are likely to quickly become bored or frustrated, thus losing the motivation to stay and listen more.

If I was speaking clearly, but what I was explaining was something you weren't interested in and found boring - you could clearly hear me - so perceivable, and understand the words, so meaningful, but as it is not interesting or useful to you, the motivation part quickly starts to reduce.

To learn from them most effectively, our experiences need to be a combination of perceivable, meaningful, and motivational.

The times we learn best are when all three - perceivable / meaningful / motivational - get big ticks.

Slide 6

So, of the experience bit, the particular part we are interested in, where CVIs are a factor is the perception bit - because we perceive through our five senses, and CVI is obviously a visual, so sensory impairment. I've heard different figures, but it is widely repeated that around 70% of how we learn is visually - so putting that into the key perception part - of the key experience part - needed for learning, the vast majority is linked to the one sense that is impaired for the person with CVIs... but it's more than that...

Slide 7

With CVI's, vision is not always consistent, and for some it can vary wildly, and affect their other senses, particularly hearing. But accommodations for visual impairments are still most widely geared towards those with ocular of the eyes, visual impairments.

My point is, that even where there are allowances, we make learning very difficult for people with CVIs, which is why the most severely affected often have considerable learning delays, and the mildly affected often have difficulties, if not around learning, around emotional and behavioural development, and this is where we can get the development of challenging behaviours.

Slide 8

The reason I have gone into detail trying to explain this, is because, for most, it is here - within the perception part of the experience that is needed for learning, that the problem lies, and it is also here that the solution lies, so everything will keep coming back to this.

That's the end of the first talk, talk 2 will be far more CVI specific - are there any questions?

Talk 2 (of 3)

Slide 9

Talk 2

CVI & Behavioural / Emotional Development

CVIs can affect anyone with a brain, from premature babies to the elderly, maybe with dementia or stroke survivors - CVIs can be acquired at any time, from developing foetus onwards - throughout life. The person may have severe learning difficulties, or be a highly functioning professional. So we are not going to cover everything, but what I am hoping to do is show some common themes, so you can take them away and apply them to those you know who are affected by CVIs.

Behaviours and emotions are both learnt, and affect each other, sometimes harmoniously, sometimes not so harmoniously.

Slide 10

This image is from the CVI Scotland page on Emotions - these slides will be sent out after the convention and the last one will have links to all the pages used if anyone wants to read further

So going back, 70% of how we learn is visually - but we have a visual impairment, and 90% of an emotional message is non-verbal - that means the vast majority of how we communicate how we are feeling is visually, through our expressions and body language. And that is how we are expected to understand how others are feeling...

We need something to be perceivable to learn - none of us can learn from what is not perceivable to us.

I recently was talking to another parent at an event, and their child was having great difficulties with friendships at school, and she was increasingly isolated, it was very upsetting to hear what was going on, and whilst she had some VI input in lessons - and this particular child had an ocular visual impairment not a cerebral visual impairment - no one had ever taught her anything about social interactions or the incredibly complex tacit rules of social engagement - basic things like how much physical space people need around them, she clearly didn't know, and came up to me and positioned herself no more than a centimetre away from my face. How was she expected to learn - by magic? Everything she needed to learn was not perceivable to her - how could she learn if no one taught her?

Slide 11

And here, as with so many things to do with CVIs, we have to create the environments to teach everything, because the world created for people who learn 70% visually is no more than 30% accessible.

So that is one problem area - typical children will grow up, and naturally learn from one another the social rules of engagement, from infancy, and learn, often with a little trial and error, the foundations of healthy and meaningful relationships, which are needed for everyone in life, we are a gregarious species - if someone chooses isolation, it is likely that something has gone very wrong.

This is the learning hurdle, and it is a huge hurdle, but I'm afraid it is only the first of three key hurdles those with CVIs face, which can result in challenging behaviour. The next affects those who have had CVIs from birth or early infancy.

Slide 12

As already said, our first year of life is our emotional foundation stone, as we feel protected by our family and gaze into our mothers loving eyes...or not gaze into our mother's eyes if you can't see ...but actually, I know with my son, that without sight, as he was completely visually unresponsive as a baby, he very quickly connected with me and knew who I was - in fact connected to me like a limpet! Holding on for dear life... because what I didn't realise was how terrifying life often was for him in that first year. I have spoken to many parents about the first year of life, and we shared similar accounts of our babies who would suddenly get extremely upset, scream like they were in mortal danger, and become increasingly averse to new people, new places and new experiences - and these are very early developing autistic like behaviours.

So, that platform of learning is already extremely difficult for babies with CVIs, but on top of that, many children born with CVIs have other medical issues affecting development. And many, require multiple medical assessments and interventions, particularly in the first year. The other medical conditions, particularly if there are other processing difficulties in addition to the CVIs, make the likelihood of anyone understanding and effectively accommodating them less and less likely, but also, multiple medical interventions can be traumatic. Some will be lifesaving interventions, this is in no way a criticism, but we need to understand any trauma a child may have sustained in their first year in particular, because this will carry-over in some form into their infancy and childhood.

I am going to come back to this at the end of this talk with a few examples.

Slide 13

So another hurdle - CVIs cause frights - sometimes little jumps, but also screaming in terror for one's life, frights at times.

One CVI affects how we see movement, where things that move too fast are not seen. It is called dyskinetopsia - broken down that is...

dys - meaning there's something wrong with it

kinetic - about movement and

opsia - about vision

There's something wrong with movement around vision. Dyskinetopsia.

Things moving too fast and not being seen is of course the case for all of us, if we just move our hand in front of our face faster and faster, it becomes less clear, however with CVI, this can be much more marked, and this is why we need to understand for everyone who has CVIs if they are affected by dyskinetopsia, and if so, how slow things need to be to be seen. But there is a flip side, where things that are moving too fast are not seen, when they slow down can suddenly become visible - like appearing out of nowhere

Imagine, sitting all comfortably, and from nowhere, like a genie, someone just pops up next to you...it might feel a bit like that...but there's more

Another CVI affects the accuracy of the three dimensional map our brain creates. It is called optic ataxia

Optic - relating to the eye or vision

Ataxia - which has been borrowed from the Greek word for disorder, but the medical definition is around a lack of coordination

It could maybe be thought of as disordered visual guidance of reach

The technical definition is inaccurate guidance of reach, for some this may be very slight, making them seem a little clumsy, for others it can be severe, and this affects how accurately we reach for things - and we reach not just with our arms and hands, but also with our legs when walking, and to a degree our whole bodies, as we position ourselves according to the three-dimensional environment we are in.

And here we have another flip side - if you are unable to judge distances accurately, how are you to know how far away something is, particularly if it is coming towards you? And where a person is affected by both dyskinetopsia and optic ataxia, which is common - then you have the double challenge of calculating movement and distance combined, when both processes are not accurate... I first got my head around this talking to a mother who was describing her son who loved to walk in front of her shopping trolley, but would regularly brace himself, as if some sort of collision was suddenly imminent - when she couldn't see anything there. We called this looming.

And what happens when we think something is going to hit us - and whether it really is going to hit us or whether we incorrectly think it is going to hit us, makes no difference to this - our systems of attention do their job, which is to protect us from harm, and faster than you can consciously process - because this is all the non-conscious brain, a message is sent to a part of your brain that initiates your fight or flight reflex.

We all know what it feels like, the adrenalin, making us feel very on edge - it's not actually a pleasant feeling, but it's not meant to be, a very quick assessment, by the brain, will decide - flight (or run), and blood is diverted to the big powerful thigh muscles to make you faster, of fight, and blood is diverted to your fists.

The more I learn about the brain, the more I realise that in evolution terms, we are still very much hunter gatherers!

So, potentially any movement around the person with CVIs can be terrifying - but there is a third element that causes frights - and that is the challenges caused when you can only visually attend to one thing at a time - called simultanagnostic vision - again

Simultan from the word simultaneous, which means to do more than one thing at the same time, and

Agnostic - not aware of or doesn't exist

Slide 14

This picture (above) is a photograph of a supermarket - none of us see like this - but we all think we see like this!

A photograph has high level and equal clarity across the whole image, whereas with typical vision, what we see looks more like this

Slide 15

Looking at the lady with the grey hair on the scooter (image above), that is the point we can see most clearly, and everything else is less clear, decreasing in clarity the further away you are from whatever we are looking at, to the edge of your visual field. If you have anything with writing in front of you, pick a single random word in the middle of a page and look at it, and whilst looking only at that word, see how many other words you can read clearly - that is your visual attention - it's not very big, but key is also the clarity outside of what we are looking at.

Slide 16

With only mild simultanagnostic vision, so just a slight reduction in what you or I have, finding things is going to be a little more difficult - it's not obvious that the flowers are on the left, so the person is likely to rely upon their memory of where things are more - but also, what if someone steps out from the aisle on the left? At what point will they be seen?

Slide 17

And here, when it is slightly more severe - people, and shopping trolleys and little children running around can all appear to pop out of nowhere.

Slide 18

Is it very tricky to untangle which of these three challenges is responsible for the frights, and it is often a toxic combination of the three, and this is one of the main reasons for the development of challenging behaviours - on some level the message is I don't feel safe.

Slide 19

And here we start to get to the all important why?

All of us develop behaviours, and not all behaviours are challenging - one of my son's charming behaviours is to greet people with a kiss on the hand - it is of course completely manipulative because he invariably wants something from them, but has worked out that this little gesture endears him to people, who in turn are more kind and patient with him, but other behaviours are more difficult - and these are the ones we particularly need to understand - to understand why? What is causing this behaviour?

Slide 20

What I have repeatedly come across, is that people muddle behaviours up, and put everything into a big sloppy bucket, and it is hard to make sense of anything. We need to separate the behaviour itself, from the cause and reaction to the cause. They are of course connected, as one leads to the others.

Slide 21

So here are some of the actual behaviours, lots of refusing to do anything unknown, but another is lining toys up, or insisting food is presented in a very specific way - and where CVI is present these are completely understandable behaviours, not because of fear, but because things can become lost or confused if not placed in order, when one can only see a small number of objects at a time.

Slide 22

And, when the behaviour is challenged for example introducing something new, there is a reaction, which might be screaming and shouting, hitting and biting or for some withdrawing.

I think it's a bit easier to explain using real examples and I have a number to share in this and talk 3, which I hope will show how challenging behaviours develop in many children with CVIs.

The first two are reflections on the first year of life from two children, both with CVIs. One is a boy who needed many medical interventions including a long stay in intensive care, and with his mother we gave this boy a voice...

Slide 23

It's the same all the time, some things hurt more than other things, I don't understand why I am here or anything around me. I have no sense of time, I don't know how long I have been here or how long I will be here. All I know is that most of the time it's not very nice. I like looking at one thing at a time, because that is the way I see. I understand one thing, them, when they hold me close I am safe, that is the only thing I look forward to.

Here's another boy who, in his first year who required multiple medical appointments and interventions:

Slide 24

Sometimes it's nice and quiet, I'm so tired, but I'm frightened to sleep. Sometimes I am woken up and people hurt me, sometimes I am woken up because I can't breathe. I want to sleep, but I'm too scared, and when I can't stop myself from going to sleep, I wake up frightened, not knowing where I might be or who might be here, and whether I might get hurt of not. Sometimes there are noises that are so close and loud I think they are going to hurt me. My mother is always there, somewhere, if I scream she will come, always.

These boys have devoted families, but for both, that first year was very damaging, and whilst, as I will explain in talk 3, there is an enormous amount that can be done, unfortunately we can't re-write the past.

Our first year of life is our emotional platform, but as pre-language, we don't have the memories to match behaviours that can arise from events in that first year - but we do have something else - parents with memories - this is key, that knowledge of the person's journey going back to childhood, or the event if CVI was acquired due to an injury, is key to understanding them, and the causes of behaviours.

Another example is about my son, who would have these extreme screaming fits, as if from nowhere. When we started discussing these extreme reactions - a child so distressed one's first inclination would be to call an ambulance, we called them CVI Meltdowns - so many people reported having similar experiences - here's one example that I think may explain the process a little...

We used to live in Wimbledon in London, and I would push Arran, along the quiet back streets from the town centre back to my house. Suddenly, the screams - and I'm looking around for something, and I convinced myself something awful must be happening in his brain and went to the doctor with that concern many times. Here's what I think happened...

Walking along, all quite, a car approaches, not a loud motorbike - I'd have picked that up at the time - just a car, approaching a turning - it slows down, where it suddenly becomes visible, moving, at what to me would be a snail's pace but to Arran, who has dyskinetopsia so processes speed differently, is probably approaching lightning speed, it has come out of nowhere and is almost certainly going to kill him - that is what his brain has calculated, and has sent all the relevant signals - imagine right now, an engine part has fallen off of a passing aeroplane and crashes through the ceiling - this is not about conscious calculated responses, this is about brain reactions - and then imagine the confusion, having braced yourself for certain death, for everything to go back to normal, like nothing ever happened...and imagine that happening repeatedly, sometimes daily - so you resist going out, going anywhere new, people who don't know you - you are starting to develop autistic behaviours.

Another example is a very bright little boy with only very with only slight difficulties finding things, or seeing someone in a group or something in the distance, so mild simultanagnostic vision, but he found little things difficult, like sitting still in assembly, and the rules of games on the playground, he was a bit rough when he caught children playing tag, and found staying focussed in class difficult, and was constantly being 'talked to' by the teacher - how must that feel? To be told off, genuinely not knowing what you had done wrong - eventually learning to just accept it as a part of your life? His mum has said he is getting invited to fewer parties, and without the understanding of the cause of the difficulties, what is likely happen?

Following other children at other ages, there seems to be two common paths, one to chosen increasing isolation, which will inevitably lead to loneliness and depressions, and the other is be become increasingly disruptive and difficult - to keep fighting, which in the circumstances I can kind of understand, but again, without understanding, coping with ever increasing behaviours becomes harder and harder.

All people with CVIs are affected differently, these accounts are based on my personal experiences and stories other parents have shared with me. I hope some elements will be relevant and useful to you.

I don't want to end on a depressing note, because this is all about making positive changes to make everyone happier.

There is no blame, we are all on a journey of learning, so next, in Talk 3, to turning all of this around, are there any questions?

Talk 3 (of 3)

Slide 25

Slide 26

To recap - behaviours have both causes and reactions.

The cause answers the question why, and needs to be separated from the behaviour itself, and the behavioural reaction.

So we need to seek causes, and to find the causes we need to know quite a bit about the person

Slide 27

This may seem like a lot to know, the individual CVI's, their ranges, what makes them better or worse, other conditions, learning journey ...but it is all critical. Many stumble at the first point - listing each cerebral visual impairment - because so many think of CVIs as a single condition - in fact that is why we have moved away from using the term CVI to using the term CVIs - plural, because there is more than one - there are lots of them, brain related impairments of vision coming under the umbrella of CVI.

As explained a bit in the previous talk, each one is different, and creates different challenges.

The parents are key in this process, because they know stuff, stuff they probably don't even realise they know, just by being there 24/7.

One child we know is obsessed with small purple things, particularly short pieces of purple drinking straw, which he would demand, and then stare at, getting very angry if anyone tried to interfere or, heaven forbid take them away. So we asked mum - why the purple things? - and her first answer was 'I was told it's his autism' - which didn't actually answer the question that had been asked, but was clearly the answer that had been repeated to her - so we asked again, and it was that 'he has always liked purple things', so, being the pushy people we are, we explained that it was very unlikely the love of purple developed whilst he was a foetus in the womb, so something, between birth and the time he started his purple thing, happened - maybe a favourite blanket, a jumper or coat you wore?

And then she got it - the little purple things were the inside sections of syringes, that brought pain relief in intensive care when he was a baby, and as he became a little more able, he was allowed to play with them, one small thing, the only thing he could do for himself - and it was desperately upsetting, because this full blown obsessive and severely autistic behaviour, started life as a connection during early infancy, between the colour purple and pain relief - but the really important step was the one his mum took - she realised that her son's behaviours that has been assessed as severely autistic, had causes - that autism wasn't the cause - and that she had a head full of knowledge, and rather than accept a label - he likes purple because of his autism - she now seeks causes, to understand - he has CVIs.

What happened with this boy was that this behaviour - an obsession with small purple things, had become Pavolvian - it started as a direct connection - purple = a probably association with pain relief, and secondly, purple was reinforced as a toy to play with, but it was more than that - this boy has severe simultanagnostic vision, that little purple syringe was the only thing that made sense in his world, he could control it, it was consistent, he knew it - can you imagine a world that didn't make any sense, across your senses - and so purple became incredibly important, obsessively important, he clings onto his small purple things because they are the world he can control and make sense of, they are his world, because we have not made our world meaningful for him. So, several years down the line, a purple obsession is dismissed as 'just autistic' - these Pavolvian behaviours are really tricky, because what we see, is often far removed from the actual cause, so detective work is needed, trailing through memories - the memories of those closest, invariably the parents.

It's not easy, and sometimes you get it wrong, these are complicated issues, but you do get better and better, but even if you are not sure about the causes, there is still a lot you can do.

Firstly, look at the behaviour positively, so rather than challenging, think what it is trying to communicate - and if the message is one of fear, then your approach needs to be of the tiniest baby steps.

Slide 28

This type of cycle we have found to be all too common - people trying to push too hard, or trying to process a child, making them do something that isn't appropriate or doesn't make sense - and so inevitably the child resists more and more, and the challenging behaviour is reinforced.

So we need to take some steps to reverse that cycle, and the first is to identify the source of the fear - so for example if it is new people, then you start with someone known, loved and trusted.

Slide 29

And then you need to see things from the child's point of view - if they don't trust new people - why? I have so much direct experience of the most loving devoted kind and generous people simply scaring the living daylights out of my son - it's not about blame but you need to understand from the child's point of view, why? - like the person who, from behind, wiped his face whilst he was strapped in a chair enjoying yogurt whilst watching the television - doesn't seem like much does it? - and straight away, he turned into the trapped animal desperate to escape - that is all it takes - because in his world someone might as well have stuck him - they really really frightened him.

So let us say you are introducing a new carer or babysitter, you know they are very cautious of anyone new, you know why - they have been frightened - it doesn't matter that you know they were not in any danger - it matters how they felt - so things have to make sense, thus don't put too many demands on them by introducing lots of new things at once - ensure they are completely in control and able to walk away and be mindful of any sign of fear, and be there for reassurance, and letting your child dictate the pace, if needed the tiniest step at a time, let them explore - whether it is a new person, a new place or a new activity.

Slide 30

And change the cycle to a positive cycle of learning - there are no quick fixes, it's slow and takes time and evolves.

This process of baby-steps and one thing at a time is not new - however it does need the understanding of why the behaviour exists - and for that you need to understand the person...like this - again

Slide 31

and not attribute behaviours simply to a label - and CVI is a label when it is used as a generic term, low vision and learning difficulties is another label - you need to go a step further back, and answer these questions - here, in this list, are your causes - here you will find the specific reasons - related to many different things, including the effects of individual cerebral visual impairments, and the combined effect where a child has many - my son has seven CVIs as far as we have figured out - reduced visual acuity, reduced colour contrast sensitivity, lower visual field impairment, dyskinetopsia, simultanagnostic vision, optic ataxia and apraxia of gaze.

Slide 32

Protective Shields is a sort of toolbox of kit to help, there's a full explanation on our website of how to put the toolbox together for each child

This is another of the sections that evolved through dialogue with many parents. It started with two parents discussing their child with CVIs love of sitting in a box, and then we got all sorts of things, another child loved to snuggle inside a suitcase - and what we wondered was whether this shell, gave the child a sense of physical protection - that is physical protection from being hurt - and equally, deep pressure, which just about all of our children enjoy, maybe gives a similar sense of protection.

I heard an account recently of a man who has optic ataxia so severely it affected everywhere he was, except when he was in his car - he could drive, and the known walls of the car protected him, and he had sort of re-trained or tricked his brain to sort of dis-alarm when driving, and was by all accounts a very safe driver - and I have done something similar with my son - in his chair, particularly a deepset all-terrain chair, he relaxes because he knows the chair protects him, and that means his brain has learnt to switch off the fight or flight control - turn off the alarm - so he can relax - and we can take him out

Protective shields can be people of course, who over time have been reinforced as someone who protects you from harm, or the feeling of possible harm

It's interesting - you probably all know about claims the MMR vaccine, given at around 12 months, and that some thought it caused autism, the evidence seemed to be only circumstantial, because for many, the first signs of autistic behaviours start around the first birthday, the same time the MMR is given, and someone put two and two together and caused mayhem - endless research has shown absolutely no evidence linking the MMR to autism, but something else happens around that time that I think might explain this phenomenon of children seeming to develop autism around their first birthday...

....up until their first birthday, most children are unable to walk independently, although some have started crawling, but they are always heavily supervised, because they have no sense of risk, but as the child moves more and more, to become independent, those early protective shields, of prams, being carried and very close supervision, are relaxed, and where a child has unknown CVIs, that is going to be the time that life starts to become difficult - the child will be often frightened - for the reasons CVIs cause frights as explained in the previous talk, those early difficulties are likely to entail behaviours that help the child feel more safe, and make sense of their world - like clinging to their parents, resisting going out, and this will affect developing social relationships, and where emotions are not perceivable, may make them seem lacking in empathy...anyway, I think it's interesting - the challenges didn't magically appear around age one, it is likely they were always there, just not obvious.

There are also some universal things that will help, including reducing clutter, and avoiding busy noisy places - and if these can't be avoided, make a plan - I was recently told about a teenager who has to go to a local mall, even though it is so awful she is always a complete state after - and I get that - I have teenage daughters, so then think about agreeing strategies, like a known lift home a quiet car at an agreed time, and time to relax once home, because what we want to do is help make life accessible.

For the more able children and adults, where behaviours are caused by an understandable lack of social confidence, it is the same tiny baby steps approach, it works for everything, and you won't get it right every time, and sometimes it will go very wrong, because life is unpredictable, but if you are consistent, the rights will outweigh the wrongs - that's my experience anyway, and those behaviours will start to slowly shift, because I believe:

Slide 33

That we are all naturally explorers, and want to learn, and do things for ourselves and control our own lives, and that none of us like being lonely or feeling scared or confused - and that is our motivation - it is in-built, get the other stuff right and it should all follow

I hope I have made sense, there are a lot of things that have to come together, but it does work - it has worked for me, my son was that child who was severely averse to anything he didn't already know, unquestionably autistic behaviours, although I resisted multiple requests to get him assessed, because I didn't think the label would help him - and his behaviours are now considerably less autistic - the autistic behaviours were created, and I know why - and there are a lot of things we can't do still, and somethings we will never be able to do, I do sometimes get it wrong, but I am getting better, but my son is able now to explore and learn, and is quite simply so much happier - still high maintenance, he always will be, but the difference knowing what I am doing, rather than the blind trial and error of before , is huge for me too.

Thank you

Any questions?

Slide 34

Links:
CVI & Behaviours
Learn = Experience/Memory/Recognition
Emotions
Looming & Frights
CVI Meltdowns
Protective Shields
Guide for Parents

Helen St Clair Tracy

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