Autism: how anxiety affects everything - Sarah Hendrickx

my what I've been asked to talk about today is about anxiety is this something that you come across in your sari you know that was going to be audience participation did you there there is anxiety and your children hands up yeah a general a general kind of thing yeah absolutely and and so what I kind of premise for today I suppose is this but please ignore the extra width because I've put a typo in there my premise for this talk today really is that it is entirely expected that people on the autistic spectrum will be anxious it's not an accident it's not a coincidence it's not just a kind of random thing that happens it's actually a core part of the experience of life on the autistic spectrum and in order to kind of illustrate that I'll talk a little bit about myself and talk a little bit about other people that I've kind of met and worked with and all of those kind of things I just wanted to say this morning everyone was in Rita's talk this morning yeah and she was saying that people with autism didn't like Christmas I love Christmas so don't have to leave the house and it is thank you today you are for me I love Christmas cuz I don't have to leave the house and the house is my absolute favorite place to be in in in all parts of the world leaving the house makes me anxious just just walking out of the front door it's also the only time of year my one of my fanatical special interest is cooking and it is the only time of year where I don't look weird because I can make five flavors of ice cream and nobody thinks that's unusual at Christmas the rest of the year they all think that's a little bit strange but Christmas is my special time of the year to be able to do all of those kind of things without looking peculiar apart from all the bloody people that keep coming round and bugging me Christmas would be absolutely perfect for me not not a problem at all so talking about anxiety is anyone here anxious now I mean it's not therapy or anything I really have no way the empathy to deal with all of that but anybody feeling particularly anxious or worried now why not why aren't you anxious you should be you don't know where you are you don't know what's going to happen you don't know who I am you don't know I'm going to ask you to do you don't use so much uncertainty in your lives generally you might not know exactly how you're going to get home you might not know what you're going to have for your tea but none of you are anxious why is that that that's my kind of question for you I suppose for me right now I am less anxious than I've been ever since the moment I woke up this morning I've been here all day I've been wandering around I know that some of you were only here because you're hoping to get on Kelly this is that this is the time of the day that I'm actually been least least anxious anybody got any thoughts about why that would be structure yeah absolutely yeah sorry yeah I've been here all day so that's kind of easier yeah absolutely I'm here to do what I'm doing what I came to do the rest of the day has just been a load of sort of hanging around and stuff yeah absolutely this is not reciprocal this is not social you have to listen to me it's my turn now my subject my script my agenda this is not a friendship this is not a two-way it's conversation I can say all sorts of things up here that you will forgive me for because I am here if I were to have a conversation with you and I were to say something accidentally offensive you wouldn't forgive me because you'd think that I did it on purpose or it will be kind of accidental so me talking to you in the foyer in the break is terrifying me talking to all of you at once now it's not terrifying at all it's almost too many of you for me to worry about so I don't worry about any of you so often people kind of say well how could you do that how could you stand up but actually I am more equipped to stand up and talk than you are potentially cuz I don't care what you think about me that's not true I don't care what you think about me I just haven't got a clue what you think about me and therefore that kind of liber8 Smee from all of the panic that some of you might have about the idea of talking up here or what will they think of me what if I make a fool of myself oh my god all of that kind of stuff none of that enters my head the only thing I worry about is forgetting what I'm going to say because I've got a terrible memory and myself so that I feel that I've done a bad job I'm more concerned with my sense of failure and this is something I'm sure you're recognizing a lot of your children this sense of perfection is not wanting to make a mistake causing kind of anxiety I'm more concerned with my standards than I am with yours sorry but that's just kind of kind of the way it the way it goes so there's I think sometimes there is this topsy-turvy world for people with autism the things that you might think of fun other children think of fun parties Christmas nativity plays these things are hellish for a lot of the kids in some of your schools don't they they are just the worst case scenario for them whatsoever I was watching my grandson's play the other day I know I don't look hard enough and and and I was just thinking what a what an enormous Lee empathic female and it adds is something that Rita said this morning every female orientated thing they're singing they're dancing they're holding hands they're dressing up this is all of these kind of things are very much a kind of a female agenda to a degree and even I might look sorry I'm I'm a woman but that sort of thing is horror to me that kind of forced participation absolutely horrible and your other children obviously find this fabulous absolutely wonderfully an enjoyable time of the year so it's really about having to kind of make that switch and not making the assumption that what some children think is great that somebody else might think he's absolutely properly hellish really really an unpleasant kind of situation to it to be in so why aren't you anxious in this situation this is a thought of mine as to why that that may not open up them work gonna is the case I am going to have to go up here I didn't want to but I can't actually see what I've written up there so the reason that you're not anxious if you think about anxiety itself anyway and anxiety really is the feeling that you're probably not going to be at a cope with something that is about to happen something in the future they often say that depression is about past worries and anxieties about future worries so anxiety is about I can't handle I can't cope either in the next five seconds five minutes five days five years it's about something that's going to happen in the future so the reason that you're not anxious today and probably in lots of times in your lives is that you know how you feel you can understand how you feel you can feel those sensations you can name them you can share them with somebody in a reasonably socially appropriate way you can say I'm sorry I'm not really comfortable here I think I might have to leave something that our children and adults with autism find very difficult to do even naming the emotion you often say to people with autism how do you feel and they say I don't know and they don't know they genuinely don't know the feelings are all there but it's what you do with them how do you name them how do you get them out that's the problem how do I share them without running screaming from the room and being seen as challenging just because I don't have that particular kind of kind of fatha putting things in perspective that helps you when you're going to feel anxious you kind of look around you you might think well actually nobody else is looking anxious other people are coping I can read them I can read their body language I can see them everybody else seems okay so probably I should be okay - you're probably not even conscious of doing some of these things but your ability to keep yourself feeling safe by using all of these kind of skills is what makes you okay in a situation where where somebody else may may not not be okay understanding what's going on understanding the language that's been used understanding the tasks that's been set you as a child understanding that the sense of the whole the whole occasion thinking about what the consequences might be how bad can it be if you were to think about today you've probably kind of think well I've never been here before I've never seen this person before but I've been to a training session before so it's probably a bit like that so you're generalizing you're able to put those sort of concepts out there in order to protect yourself from any kind of feelings of anxiety the other things that you're good at a few more things that knowing that whatever happens you can probably handle it these are all the core skills that you just have absolutely easily being able to accurately guess what's going to happen next and I put the word accurately in there because what we're seeing increasingly with this sort of more understanding of differences between boys and girls men and women with autism is that sometimes the women had quite a good imagination that the boys sometimes don't they can't imagine anything so they just don't do anything at all nothing no note no world a distance no the girls and I'm very much fitting in to this characteristic myself I can sort of imagine everything so my fears are enormous if I were to think about the possibilities of a certain situation I can think of everything from the good stuff to the fact that I get chopped up and left in a ditch my problem is that I might attend to the possibility of being chopped up and left in a ditch more than I might attend to the more likely consequences so it might be that I decide not to go for a walk in the countryside because I think I'm going to get chopped up and left in a ditch where the chances are probably the worst thing that will happen is I'll get my defeat something like that does that make sense so what we see is this kind of quite a broad span of consequences in imaginations in some individuals with autism so it's not just none it might be too many and not very accurately defined we see in girls particularly again things like in a very fantasy kind of world finding it difficult to separate fact and fantasy and those kind of things and that's something that I experienced a great deal of I'm very frightened of things that will probably never ever ever happen to them to me but I'm so frightened of them that I it will stop me doing them even though I know they're very unlikely the fact that there is that tiny tiny possibility of it happening is too much for me and I won't do it so it there's a kind of mixture within this sort of abstract imagination kind of thing but for you it's a you're able to kind of accurately generalize the situation make any mental leaps over any gaps in information that you've got these are all the things that kind of kind of keep you keep your safe you also know that if it does go wrong you can think of probably quite an effective efficient strategy to sort it out your strategy one B to punch the person next to you and run out the room your strategy won't be to give up your job and never go out the house again your strategy will be moderate it will be a gentle kind of thing I often think about people on the autistic spectrum is having a toolbox in fact all of us have a toolbox but people on the autistic spectrum their toolbox doesn't have much in it it doesn't have the fine-tuned little tools that just tweak a situation generally when a person with autism opens their toolbox they either find nothing nothing at all no strategy no idea how to solve this situation or they find a hammer and will use a hammer to deal with everything and that's often the way that some people kind of kind of deal with things so it's not the tweaks it's the oh can't do it I'm leaving it's the hammer all of the time and socially it's often the hammer as well you know it's not the subtle compliment it's not the subtle lie the white lie all of that kind of thumb it's the hammer yes you look fat don't ask me again that's it a much more kind of extreme version of a gentle subtle response that perhaps are that other people have knowing that your chosen strategy isn't going to cause you future problems this is massively important if somebody comes to your door and you don't feel like talking to them you don't slam the door in their face and swear at them because that person might be your boss and if you slam the door in front of your boss you might get sacked and if you get sacked you might not be able to pay your mortgage and you'll become homeless this is all abstract imagination this is all consequences so your behavior today subconsciously is always considering these multi-varied kind of possibilities and again a lot of a lot of people with autism are not very good at doing or all of those kinds of things so all of this stuff keeps you safe and all of those things in brackets are the diagnostic criteria for autism so the things that keep you safe are the things that people with autism either don't have or having limited quantities or having less and intuitive way something that that person's actually got to learn mechanically and again that's where the Rita said this morning it's not intuitive it's mechanical and therefore it's clunky and therefore it's prone to failure it's prone to mistakes things are likely to go wrong in that given given kind of kind of situation so we would should expect somebody should feel anxious this beautiful piece of information here you've got a slide of this because it's ridiculous you have a copy of this in the back of your behind my slides in the copy of your pack so you can see it a little bit a little bit more clearly I would love to claim credit for this piece of work sadly it's not mine although I wish it was you know I'm not sure if you can see very well it's taken from the book called cognitive behavioral therapy for adults with Asperger syndrome by women call Valerie Gauss and for me in a lot of the work that I do I work with individuals go training all sorts of things it's a really nice little understanding I hope of autism and how it all kind of fits together what we have at the top level is the cognitive processing this is the thinking bit the bit where you make sense of the world the bit that says I'm hot the behavior bit says we'll take your jumper off then what my premise would be here is that sometimes we think autism is at level 2 which is behavior it's not it's at level 1 it's at thinking if I behave differently it's because I thought differently that the information that I've processed that I've understood that I've taken in has been different to the information that you have processed so that my behavior has turned out to be different this works for everybody we all think something process it feel it sense it whatever and then we behave on that on the back of that I don't believe people do things randomly I think behavior follows processing of some kind kind of thought so at the top level we've got these three areas these gaps I suppose first one being processing information about other people reading people facial expressions empathy all of those kind of things not picking up the correct information for the correct situation the middle one on the top rows processing information about yourself your own emotions the sensory world feeling overwhelmed being able to manage that as your own emotions kind of over what your notions show get get up and down all those sorts of things the third one is processing information about non social information that's your abstract stuff that's planning that's knowing what's coming there that's decision-making that's organizing yourself all of this is quite abstract you think about the school day there is a huge amount which is unsaid and unspoken unless you're in a special provision where you're using schedules and timetables and all of those kinds of things but you can fill in those gaps you do that well you can guess you can generalize you can pick up all those kinds of things the next layer down is the behavioral stuff if you don't read people properly if you've missed some signals from somebody waving at you smiling at you being upset your behavior might be that you completely ignore them they may be crying and you may be waving at them beautifully they may you may say you're right and they say I'm fine and you say jolly good and off you go you've missed some of the signals your behavior is different than expected as a result the next level down is consequences so if that's how you behave to people eventually people don't like you very much they're going to ignore you they're going to bully you they're going to reject you they're going to think that you're not a very nice person this is a very very quick view of this this is this is a much longer and more complicated thing on the other side we have processing problems decision-making this might be somebody who where they get a letter and they're too frightened to open the letter and they think well I'll just throw the letter away straight away your problem solved it's gone letters gone problem solved stress level down smashing sadly that letter was from the benefits agency or the electricity board or something else and the knock-on effect is that you end up in court you end up evicted you end up in debt or all of these kind of things it's astonishing to me how many adults you would think that a person with autism would have quite a small and safe life but a lot of independent autistic adults get themselves in all sorts of bother because they kind of measure they're trying to manage their stress on on a very fight-or-flight basis get rid of it get rid of it get rid of it without being able to see the consequences and without knowing that if I sort it out today all the bad stuff won't happen kind of kind of further along the line all the stuff about adults is relevant for your children because if you can teach your children these skills now they won't have the problems adults like me huh who didn't get diagnosed until much much later in their lives so you can do something to change the outcomes of the children that you're working with so it doesn't end up having to be this way so as we can see if you think like that you will behave like that the world will treat you like this and the outcome will be anxiety it's natural for this person to be anxious its natural things will go wrong for this person because they're missing something at the cognitive level and that's where I would say that we need to support people the behavior level is one thing but actually the best thing to do is to try and help people to fill in the gaps at the cognitive level to be able to understand what's going on out there your world and be able to try and fill in some of those gaps a little bit that's not trying to make people normal that's not trying to take away who they are it's like giving somebody an instruction manual if you go to France you buy a guide book in on France if you live in your world give these people a guidebook to your world because if you want them to be successful if you want them to be independent you need to know this stuff you can't go into the workplace getting this stuff wrong without being fending people without getting stressed without things going kind of wrong for you and that's kind of where you're moving your young people onto into education on to kind of kind of the workplace so it's a kind of knock-on effect really you think like that you behave like that that's how life treats you you eventually will be fed up with it you'll be frightened you'll be scared you'll you'll be you'll be generally kind of kind of fed up with all those kind of things I think there's an extra one that comes down there and we'll talk about that in a little bit and that I think that's physical health that actually being anxious for a very long time causes you physical health problems so some of the kids that you work with you may see them having little bits and pieces which may actually run right the way back up to the autism the anxiety is caused by the autism it's you can't treat the anxiety the autism remains we've got to go right up the scale and go treat people right towards towards the back the other thing I think just some general kind of thoughts about why these individuals find the world all just too much is the sensory stuff the world's just too unpredictable people change their plans all the time one day my friend liked me and then they didn't like me anymore that's stressful I don't know what I did wrong how was that I always have my blue cup for breakfast today my blue cups not here I don't know why that is that's really stressful what we're likely to see from all of this is what we call challenging behavior sometimes because the person cannot work out what the hell is going on if you've ever been in a situation where you didn't know what the hell was going on you were anxious I'm sure it's that feeling you're out of control you don't know how to be don't know what's going to happen you don't know how to solve it this I would argue is how most people with autism feel to a degree every minute of their waking lives particularly when they've left the house home is a kind of sanctuary bedroom is a kind of sanctuary it's as soon as you step out into the world which is full of people that things start to go slightly awry slightly wrong an example is that there is one person in this world that thought this carpet was a good idea anybody else here been freaked out by this carpet all day thank you madam thank you absolutely I stayed here last night there is a worth I'm not sure if it's worth have you seen the one without the squirrel is that's got the little yellow wee brownie kind of bits in it I also suffer from vertigo a heart I preferred to go that means if I turn my head too quickly the world all starts kind of spinning round all over the place you try that on that carpet I think they thought I was pissed it's kind of walking along the corridor genuinely hanging on for dear life because this carpet is physically wiggling around all over the place I'm sure most of you know about this kind of sensory stuff and I think there is a perception sometimes actually that it's an option that it's kind of like oh they'll get used to it you know it's only a carpet it's only a light it's only a thing but it's not but for some people this visual stuff if I were you I would not have been able to sit in this room all day and listen and learn with that carpet the the amount of capacity it takes to deal with that visually and cognitively would stop me from being able to concentrate it I feel a bit sick I've had to walk around the hotel like this so I can't see it it's a massive thing so I mean if you think about kids who are less able to have less able even to be aware of it you might just be in a room and feel rubbish as a five or six year old you may not know that that's because of the carpet or the lighting so some of these things it's massive it's not a choice it's not a fussiness it's not being particular it's it's as important there's a wheelchair you know that's that's a strong statement but it really is in terms of making something accessible to some of the people that were with and it makes you anxious the carpet makes me anxious it's a feeling of can't cope with it it's it's a weird thing but it's it's a genuine genuine thing where are we no idea there we go so these are all these kind of things environment short-term memory that's frustrating that makes you anxious it makes you worried because you know you're going to forget things you know you're going to kind of get things wrong not being able to know what you need you're going to forget something all of this kind of stuff it all builds this this kind of picture of somebody being being kind of anxious and feeling that you're failing all of the time feeling socially that you're going to fail a lot of the time I've just started kickboxing classes thank you I have the physique for it surely and I was in the kickboxing classes one of the worst bit is is that you have to partner up with people and it's quite a big room it's like 2030 people you have to go and find yourself a partner I'm genuinely incapable of doing that at all I look at the edge in an uncomfortable fashion and the other week I was approached by a 13 year old boy at this big and kick boxing and martial arts are quite formal so it's also an mom kind of stuff and this 13 year old boy came up to me and he said mom he said don't just stand there waiting for someone to come and be your partner you have to get out there and find one how do you tell a 13 year old boy that you're a 45 year old woman who cannot approach another person to do ten minutes of kickboxing with them it's embarrassing it's shameful but actually that's the situation that you find yourself in on on a constant kind of kind of basis and it doesn't go away I think one of one of my big messages often is that we think that if we put all these strategies in for children at some point they'll leave your school very sorted he'll actually be fine but it's not and that's not a bad thing and that's not doesn't mean that you should stop but actually this person will be autistic forever and that they will learn different strategies for themselves but actually you can start that process and help that person later on in their life when they're 40 50 60 70 they will still not be able to approach somebody in a kickboxing class they will still find it very stressful when they forget everything if that stuff isn't going to go away but the way they feel about themselves can change and you can make a massive difference in those kinds of things and that's that's a huge huge kind of thing um so the signs might not be visible we were we have kids who don't make very many facial expressions you might not be able to see some of this kind of stuff you might not be able to see the difficulties you might not be able to see the autism you might not be able to see the struggles that these in dividuals are having their again some suggestion that almost that again it's a kind of boy-girl thing that a lot of the girls are much better at hiding this stuff and that the knock-on effect of that is greater mental health issues bigger problems than the boys and I might my partner Keith also has Asperger's I chose very well and he has no mental health problems at all because he does this to the whole world he suggests anything to my partner Keith and he says no nope nope nope and you have to convince him a hundred percent every single crack of detail has to be provided before he would say yes you've got kids like that in your classes yeah yeah they was just saying no because no keeps you safe no doesn't make you anxious no means I stay where I am I know where I am I absolutely fine here here I go what seems to be the case and I'm generalizing here in terms of gender that there are a lot of the girls they say yes because they want to fit in I don't want to stand out they don't want to be different but the more you fit in the more you're bending the more you're bending away from your natural self and eventually the more that has some sort of potentially mental health kind of kind of knock-on effect so I'm going to show you just as a personal kind of thing I suppose this is my well I've got a caveat up here because I do not want any of you going away and diagnosing everyone with autism who happens to have any of these kinds of things that's not what this is a personal illustration I just wanted you to see that being older being clever I was a gifted child doesn't make this stuff go away I have a lovely life I have a good life I I'm I'm very lucky and very fortunate kind of kind of person but actually behind the scenes as in some of your children I don't have frightened you either all of this stuff's going on that's my life that's what happens to me all of the time when I'm not standing here with you I would be picking my fingers I would be plucking hairs out of myself I have an anxiety level which is probably a 3 or 4 every single minute of every single day my chest is constantly tight I'm always frightened of something or nothing or whatever that's just there all of the time and possibly you find that a little bit hard to believe because I'm up here being gobby this is my safe space as I told you that's real and some of this stuff might be happening with some of your kids so what I'm saying is if you've got these kids with autism look out for some of these things these are signs of anxiety do you have the nail-biters do you have you know kind of Pickers do you have all of this kind of stuff this is a sign there might not be any others that this is someone who's anxious and they're anxious because of their autism so don't tell them to stop picking their fingers that might be the only thing that's getting through the day we've got to deal with it from sort of top down if you like in that kind of thing I want to mention this one at the bottom here because that's scary this is something that I've come across with other people with autism young people and older people is people freaked out about the idea of suicide yeah and anybody worked with young people who've talked about ending their lives yeah a few of you definitely I'm not going to say that none of those people are suicidal not in the slightest what I have come across and this is my experience is that it's a sense you know when you shut your computer lid and it just hibernates that's what I want to happen I want to be temporarily not existing to me there is some kind of qualitative difference between that and being suicidal yeah does that make sense and other people I've spoken to have said the same thing they just want it to stop for a little while just stop now but it's not on my understanding of general suicide is limited it's not quite the same kind of thing but I think that we freaked out if somebody says I want to be dead we freaked out about that of course we do it's a terrifying thing but it may be that actually what the person's experience is just it's just too much make it stop I don't want to think I don't want to hear I don't want to be here but it's not necessarily forever and ever and ever it's just for a temporary current kind of thing and that's really normal for a lot of people and I think part of that is about not being able to manage your emotions terribly well so if my emotions feel overwhelming I just want to be gone there is there is no means it's black and white I'm either fine or just get me out of here just don't want to exist anymore and that happens very very quickly I'm sure your kids have flash tempers they go from being okay - not okay extraordinary quickly yes this is a commonly recognized kind of thing we don't seem to be able to moderate or recognize the signals it's a bang comic hope need to be out of here a much more extreme kind of kind of version of that but for me and I can't speak for everybody obviously it's not the same as actually wanting never to be here ever ever again my partner always thought I was a hypochondriac because he has none of these problems at all because he lives in this ridiculously tiny world with no people in it no change no activities nothing happens he's never anxious he's never worried because his world is tiny when he was at school he used to be now he's an adult he doesn't have to conform to all of these kind of patterns he lives his own life and it's tiny so he thinks I'm mental completely and utterly mental but he's increasingly understanding that my much bigger life has this as a payback as I mentioned earlier there's also physical things that knock on this as well and this has been a very recent thing for me because this hypochondria that my partner accuses me of is all of these niggly little health complaints this is this is my life I said I have vertigo I have lots problems with eyes and all these kinds of kind of things random things nothing majorly serious but then Nikoli they're annoying I'm always bugging and moaning about something or other and I started doing some research and what I discovered is that every single one of those things has some kind of either causal or exacerbating anxiety factor in it so that they're not necessarily all just clear kind of kind of health complaints a load of other stuff that I've seen people with colitis irritable bowel syndrome I'm sure most of you kind of know about fibromyalgia chronic fatigue syndrome these are all things and untorn balance I don't know a single non autistic person who has colitis I'm currently working with three autistic people who have colitis that's a pretty poor sample I will admit but it seems B that is certainly the anxiety is not where it stops if you're stressed for long enough more will happen and these will lead into kind of physical things a lot of these are adult complaints you're not going to see these in kids potentially but there might be things nosebleeds I had tons of nosebleeds as a child I was looking at that nosebleeds are caused by raised blood pressure and anxiety as it as a causal factor all of these little kind of bits and pieces what I want you to notice is that possibly there are signs of anxiety that you're not you're not seeing that might be mental might be anxiety might be physical kind of kind of outcomes and those those kind of things so what's the point of all of this self exclosure about all of my medical problems there's many doctors in the house no bugger could be cured autism as we know for certain individuals can be quite invisible hidden mast may be manifesting as a mental health condition and again in the women category it seems that the mental health conditions are often diagnosed earlier than the autism particularly for adult women on on the autistic spectrum anxiety may also be invisible nobody knows I pick my fingers nobody knows I do these things because I do them in private when I come out here I don't do those kind of things a lot of your kids will be learning to hide that kind of stuff because people tell them to stop it or because they know that it's not an acceptable kind of kind of things to do it may manifest as some kind of physical condition any kind of stomach upsets bowel conditions sickness all of this kind of stuff these are all classic stress reactions when you get stressed you feel sick when you get stressed you need to go to the loo it's exactly the same for this person but it may end up turning into something much much more serious in terms of a physical kind of health condition we mustn't presume the extent of either the autism or the anxiety by the external presentation you don't know what's going on inside you don't know how much work this person's kind of kind of doing and they're not separate don't try to treat the anxiety by itself the anxiety is just a symptom of the life that this person's leading so if we go back to this kind of thing as I said before this is just a symptom of this this is where the processing difficulties ours is where the gaps are so we need to try and fill in some of those gaps at least to understand that the gaps are real and that these are causing all of these knock-on effects for this person you go in at behavior level and try and help people in terms of their behavior if they don't get it at a cognitive level it won't stick they won't continue to do it if you say say hello to people when you walk into a room they'll go I have no idea why I'm doing that won't stick because it has no meaning the things that we do we do them because they have meaning there is some benefit to you there is some consequence that you understand and that you go along with to a great enough degree to make you make you stick at it it's the same for everybody it's absolutely no difference for a person or on the autistic spectrum there's a lovely you're all aware that the diagnostic criteria of change in the DSM yeah there's a really nice little line which I'm quite happy with which which is nice they didn't ask me obviously and but it says obviously this it has to be present throughout life but it may not manifest itself until the social demand exceeds limited capacity and I think this is a really crucial what line that the kids that you work with they may go past you and nothing's bad going on past another rate might be junior it might be secondary it might be Effy it might be university it might be having a baby it might be getting a job it might be leaving home but that point of capacity might not be reached and at the point of capacity that's when the autism kind of shows itself sometimes for the first time and particularly with individuals with no intellectual kind of disabilities it might be really late I did an assessment with somebody who was 81 the other day who wanted to know whether he had Asperger's syndrome or not at 81 actually it was his wife that wanted to know because she'd read an article about it a few years ago and she phoned me up and she said before I shuffle off this mortal coil I want to know if I'm right so this poor 81 year old gentleman was dragged along to my house to find out whether he had Asperger's or not she was right so practical stuff we can do expect less on a bad day this is all cumulative this person will become overwhelmed on a cumulative level if they've already not had their blue carpet their cornflakes have run out if their taxi driver has changed by the time they get to you they're probably at an eight or nine on the anxiety scale expect less or find a way to get that scale back down again bye-bye time out headphones whatever it is that that child particularly particularly kind of needs make things explicit the more certain the world is the less anxious I feel the less anxious most people with autism feel it really makes a big difference my day is completely and utterly scheduled from start to finish I wake up about an hour before I get up and I think about exactly every single thing and I run through every single important conversation that I'm likely to have all day and all of those things allow me to function in a really good and high level at the end of the day I go home have a migraine and eat a lot of chocolate which you shouldn't do to have migraines because they make it worth the bit in the middle is culpable but the bits on the side are extremely well managed and hidden in order to kind of deal with all those kind of things short sentences allowing people to be successful let's not make this person a balanced human being they will always be good at certain things and rubbish at other things let's let them be good at those things and find ways to get round these other things that's what you did all of the things you were terrible at at school I'm betting none of you do them for a job now why are we making this person be an all-rounder they're not they have a spiky profile you know that good at certain things avoid the things that your your less good at what happens next this is huge you often get kids asking you what are we doing what are we doing what are we going to have a next when's lunch what who's coming who's coming this is them saying please give me certainty I don't have it I need to have the information I'm feeling anxious it's reassurance it might be highly irritating but you may be able to stop some of that with a nice timetable or a schedule on the wall and sticking to it it's no point having these kind of schedules if you're not actually going to stick to them and do something about it obviously we know about sensory environments and all those kinds of things in terms of and this is probably for slightly younger children and and certainly intellectually more able children trying to actually shift the cognitive understanding shift that top level of kind of thinking translating your world telling people what they're getting it wrong and how they can get it right there is no point in telling somebody that certain things are not appropriate and taking that out of the toolbox unless you put something better in the toolbox otherwise next time that hammer is going to come back out again we have to replace the the ineffective the strategy with a better one actively teaching it's no good to say don't say that it's rude what shall I say then give me something else to say we've got to actively teach that kind of stuff teaching skills teaching benefits in making the benefit very explicit my partner will not do anything unless it is very clearly beneficial to him on his little set of scales that what he's going to get out of it is better than all of the stress of the change and you've got to do that for your kids what is it that they want what do they respond to what do they like what motivates them then they will change easily it's when you've got that resistance when there's uncertainty you will get a no because if you don't know enough information you ain't going to risk it this is not somebody that can imagine those those kind of things teaching the mechanics of anxiety with older people with teenagers and I get them looking on the Internet we learn about the response we learn about the physical response we learn that everybody gets anxious if you're a person who doesn't have any friends nobody talks about anxiety to actually know that this is normal it's not just you is a massively important thing to know that when you want to expand your comfort zone when you want to do something new being anxious is perfectly acceptable it's fine we don't always have to be afraid of the anxiety we can just go oh yeah I'm feeling a bit worried because it's new but it'll go away again so we're actually taking the fear out of it talking about it getting old of it actually kind of dealing with the with the thing in it in itself but it's useful it helps to protect you it helps to warn you it's only when it kind of it's out of control that it's a bit of a bit of a conic kind of problem so as I said it is about having to learn mechanically what other people kind of do intuitively I've got to stop pretty much now but I'm swayed to show you one one extra thing because I appreciate some of this looks a little bit kind of blitz anyone know what that is sorry cigarette end no no the scales start you wrong and good good gif anyone know what that is it's what yeah yeah yeah it's a lamppost it's a lamppost that's been knocked over I Drive past this lamppost on a fairly fairly regular basis and I'm kind of worried that you know I'll give you this slightly bleak picture don't you think that life is bleak for your kids is great it's interesting and you're having autism's fab it's really fascinating so on the one hand I was talking about imagination and feeling you know that if I'm considering something I consider all of these options I consider being chopped in a ditch I consider all of that kind of stuff that's the kind of negative side of it where when you can frighten yourself by things that aren't aren't really happening the positive side and I kind of mentioned this idea of finding it difficult to separate fact and fantasy is that when I saw that I thought it was a penguin I didn't think it looked like a penguin I thought it was a penguin I thought that a penguin by the side of the road was possible in Brighton your world has got lamp posts in it mine's got penguins it's not all bad it's much more interesting thank you very much for your time you you

Channel: The National Autistic Society

Views: 203,412

Rating: 4.9156718 out of 5

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Id: rPD_yzMHJls

Length: 43min 2sec (2582 seconds)

Published: Mon Feb 17 2014