Language

Now, I tend to regard myself as reasonably good at communication, but over the past year or so, I have found it much harder to communicate. This worried me for a while, then I started to think about it, and realised that the problem was not that my communication skills were deteriorating. No, it was that I had been trying to communicate increasingly complex ideas.

When I think, I think in one of two ways: either visually (by mentally manipulating images), or by talking to myself in my head. And unfortunately, both of these have major drawbacks when it comes to communication.

Firstly, and most obviously, it is hard to communicate visual ideas. Partly because I cannot draw to save my life, and partly because there are some things that I can picture in my head, but have no idea how to draw. The image is too complex; I just don’t know where to start.

Secondly, what makes it hard to communicate auditory information is the sheer volume of it. For example, the other day I was having my DSA assessment, and there was so much information to communicate about my background, my needs and so on. I had to spend about half an hour explaining my back-story because there is just so much stuff. And then there are my ideas. When I think of an idea, I have to think about the different variables – what could go wrong, how will my idea stand up to extreme conditions? Could it be simplified? All of these I think though in my head before I voice an idea, but because my ideas are often rather unusual they take some explaining, and to be honest it can get frustrating.

Take this blog for instance, right now, I am feeling a bit frustrated because I have all these thoughts that are going into and out of my head much faster than I can type, and I have these feelings I have to try and describe. It can get so overwhelming. Sometimes it feels like I am locked in my own skull. It can even feel claustrophobic. I sometimes wish I could just download a whole idea onto a USB stick and just insert it into someone else’s head. I guess maybe it isn’t such a big thing for NTs. Apparently, 70%-90% of communication is not vocal, and so by that logic, we have only 10%-30% of your “words” available for our use.

Take the other day, I was watching Jordan (who is quite vocal) asking for something, which he could only describe as “sand equipment, not real sand, the fairy thing, you know the special blue thing” Any ideas?

He was asking for a plastic blue seashell which he sometimes uses to decorate his castle. Now obviously, I would have said “the fake plastic blue seashell” but do you know what I mean by that? I have described its appearance, but there must be lots of plastic blue seashells in the world, how do you know which one I am talking about?

The speed and strength of thoughts and feelings in our heads are immense. Sometimes I think of it as a funnel under a tap. Usually, there is a steady flow, but for us, the tap is on full blast, so water is shooting back up the top and splashing me, and the flow out the end is equally violent. Can you try to understand that?

Joshua Muggleton – funnel

Beating Hans

As the heat of the May sun brings out my greatest foe (the common wasp), I am reminded of what else the start of summer means. Exams. The scary thing is that with these exams, there are no second chances: if I mess these up, then my dream of going to St Andrews will be gone.

Now I know that the University of Surrey, my second choice, is a good university and that many people would kill to get in there, but you see, I want to break free. I want to break free from my parents, not that I don’t like them, but I now want to try and stand on my own two feet (albeit with several large financial crutches from my parents). If I went to Surrey, then firstly, I would not be living in halls, but even if I was, I would still be very close to my family. I could easily hop on a bus and see them, whereas at St Andrews, I would have to hop on a bus, a train, another bus, a plane, another train, and another bus to get back home. I want to feel like I don’t have a safety net anymore, I want to feel like I am now an adult, that I am now forging my own path, under my own steam.

I guess at the moment, I always have something to fall back on. For example, I have to do laundry but if I’m unable to, someone else will do it for me. But out there, it will all be down to me. I will have to be self sufficient. And although that scares the hell out of me, it also excites me. Being away from my parents, not having anyone to rely on but myself – I guess I want to grow up.

Admittedly, St Andrews will still cook my meals, but that’s it. What is more, I will have my own room, my own ensuite, my own space. It will be up to me to organise myself: at the moment, if I forget something, Dad or someone at Farleigh will remind me, but at St Andrews it will be all on me.

Two things strike me while writing this. Firstly, I will be crushed if I don’t get into St Andrews. Secondly, I must be mad! I am an Aspie and I am saying I want to leave my routine, be organised, basically go out of my comfort zone. It seems that a lot of what I have just said goes against the very nature of Asperger’s. Or does it? I guess wanting to be alone and have your own space fits in well, but on the whole, these are not things you would associate with someone with Asperger’s. It is going to be so scary, and I know I will have a tough time, but I want to do it. I know that there will probably be many tearful conversations on the phone to my family saying that I want to come home, or that I am not good enough. But I feel like if I can get through that, get through all the hard stuff, then I will have finally bested my Aspergers.

Don’t get me wrong, I love my Asperger’s Syndrome, but I feel if I do this, then I will be like me controlling my Asperger’s, and not my Asperger’s controlling me. I know that doesn’t make much sense, as Asperger’s is a part of me, I guess it is more that I want to prove to myself that I can make it on my own, and that being an Aspie doesn’t prevent this. It doesn’t mean I can’t be productive, it doesn’t mean I need to be constantly supported, because I will have done it, I will have survived life 500 miles away from home. And I will have become an adult.

Joshua Muggleton – hoping there aren’t many wasps in St Andrews

I Exist

Ok, as I am a National Autistic Society Councillor, I thought I should plug our new campaign. Our last campaign was the “Make School Make Sense Campaign” which focused on getting the right provision for children with autism, the right training for every teacher, etc. Anyway, it was a huge success, and as a result the government have made some policy changes, especially around training. So the NAS, striving for a challenge, has decided to launch a new campaign: The I Exist campaign.

We all know that children are cute. I was reading an article in The Psychologist the other day on how the human brain responds to pictures of kids compared to adults – the difference is huge! But I digress, the point is that it is much easier to talk about children and get a response because children are cute, whereas I, a young adult, am not – much as it pains me to say it.

I Exist is part of a much bigger campaign. Last year, the NAS started a drive to raise general awareness; now this phase is over, we are concentrating on Adult provision. Some startling statistics relating to this were recently brought out from an NAS survey.

60% of parents said that a lack of support has resulted in their adult son or daughter having higher support needs in the longer term, and a full third have had some severe mental health difficulties because of the lack of support. And what is more, it is expensive for statutory services to pick up the pieces. The I exist survey suggested that local authority services could save money by concentrating on preventing adults from falling apart, rather than dealing with the adults once they have.

There is even government support for this idea, in the form of a green paper published a few years ago, and yet it never seems to get put into practice – WHY?

Over 1,400 people responded to the I Exist survey. Here’s one quote that really got to me:

“She has quite calmly said that when we die, she plans to kill herself because she knows she will be completely alone and unable to care for herself. She weeps on a daily basis because she is so scared of the future. There is nobody to help her manage her daily life, and more importantly, who will love her when we’re gone?”

Parent

How can we let situations like this continue? How can we allow people to die simply because the government can’t be bothered to put a little money towards preventative services, rather than spend ten times that on intensive support, and recovery?

So, I am going to ask you a favour. Please please please PLEASE go to the campaign website, www.think-differently.org.uk sign the petition, and see what else you can do to help adults with autism.

Children with autism become adults with autism, and at the moment, there doesn’t seem to be a place for them in this world. Let’s make one.

Joshua Muggleton – Enraged Adult.

My pigeonholes

As some of you may know, the exam season is upon us. Students all over the country, are living on a mix of caffeine pills, Ibuprofin and energy drinks while they try and cram in one more iota of information into there throbbing brain. And I am one of them.

Ok, well I don’t pop caffeine pills, Ibuprofin and energy drinks, but I do work my socks off (such an unusual expression, and does it mean you cant work hard if you have your shoes on? because you cant take your socks off without taking your shoes off, but I digress). And, so, over my last brief holiday, I set myself a lot of work to do. And something very scary happened. I didn’t do nearly as much as I wanted. In fact I barely did any work.

Now as you can understand, this got me very worried. Was there something wrong with me? Was I no longer a good student? What was keeping me from my regiment? And it wasn’t until I came back to Farleigh that I worked it out.

You see, just cannot do good work at home. Sure I can read through some psychology notes, just passively absorb information, but when it comes to some hard core revision, I just can’t seem to get my brain in gear. It is like trying to wire a plug with boxing gloves. No matter how hard I tried, I just could not bring myself to fully concentrate, and I kept giving up easerly.

But what caused this? Well, I think I just associate home work rest and relaxation. You may remember telling you in previous blogs how I could not do home work at home when I was at secondary school. I think this relates back to that. there, I associated home with escape, relaxation, rest. This changed when I was doing satellite school, and it became a mix, but it was still hard because I still had that impression that home was for rest. And now, when it comes to revision, it means I cannot revise at home.

But I am still a good student, or so I am told. Take the other day; I got up at 7:30, got to college for 9. had lessons 9-11. went for a walk for an hour. Then revised from 12 to 3, and then had classes 3 till 4:30. And after getting back to Farleigh, I worked 6 till 9:30. And so I can work in some environments, but not others.

But how can I apply this theory to my life? well, firstly (and for me this is VERY hard) I have to learn not to beat myself up when I cant work at weekends. In fact, I have to plan NOT to work at weekends. When I get to exam leave from Bath College, I will still be going to Farleigh, because I know if I stay at home, I wont be able to work. And the weekend before I have a load of exams, I am going to be staying at Farleigh, something that is totally unheard of for me.

So what can you do as parents or as people with aspergers to help your kids/yourself? Well for parents it is easy, you know when you kid is working or isn’t working well. But for fellow aspies, it is harder. You see, many of us push ourselves hard. And if we try and push ourselves hard in the wrong environment, then it can have disastrous consequences. Depression, anxiety, anger can all originate from not knowing where you work well. So the only thing that you can do is asking others where they think you work well and not so well. Or if they don’t feel you work well in any environment, then find a new one. The library is the obvious one, but that doesn’t work well for everyone. Hunt around for a good quiet spot and work there. Even see if you can work in a classroom where you have lessons – that may help too.

Ok, I will admit, some of what I have said today may seem a bit obvious. A bit pedantic. But I cannot stress the importance of this enough. And most troublingly, teachers tend not to see this. And so they assume that we can work happily for hours at home, when we may not be able to. Going into school/college during exam leave may seem like heresy, but I know it works for me, and it just might work for you too.

Joshua Muggleton – Heretic.

Lunch time

These days, we keep hearing reports about eating. It now seems that half the world is obese and the other half anorexic. However, what about Asperger’s and eating? What should we expect here?

When I was young, I was terrible at eating. I would refuse to eat a lot of things. At one point, my main meal would be baked beans, mashed potato and sausages/chicken nuggets/some other form of “meat”. Over time, my diet gradually widened and I now eat most things, but still have some things that I won’t eat, and some things which I will always avoid.

For example, I cannot eat raw tomato. Slices of hot tomato on a pizza, tomato used in a recipe is fine, but I just cannot eat raw tomatoes. I think this stems back to when I was young. As usual, I was refusing to eat much, and my parents were trying to introduce me to new things, and so they gave me a cherry tomato to eat. To my shock, it burst in my mouth, and I think this shock caused my aversion.

So how should we think about introducing new foods? Tony Attwood once said if you have a child who will eat only yogurt, and you try adding the tiniest piece of pineapple, make sure you stand behind the child. The fact is, we are often very sensitive to taste and texture. Which leaves us in quite a pickle. However, there are a few possible approaches.

Firstly, just giving the child a plate of food they don’t like, and telling them they have to eat something. I wouldn’t recommend this, partly because you will find yourself hated as parents because you only serve “yucky food!” This in turn could impact on other aspects of your relationship with your child.

The second option is surrounding food with other flavours. For example tomato in a sandwich can work well. If you have a cheese salad sandwich, with lots of other strong flavours – cheese, onion, cucumber, lettuce etc, then it will be harder to identify the tomato. Although, make no mistake, they will identify it. But because it is so mild in comparison, it may make it edible. And then they may be more adventurous with it in other forms and in other dishes. However, be warned, this method could overload the child’s senses and make things worse – it is a judgement call as to whether you think it will or not.

You can also give them new food individually. If you first try and describe the taste and texture by comparing it to other foods, and then maybe get them to taste a small bit, either by eating it or by licking it, this helps them to gear up for eating it. It’s important to keep the food taste and texture static here. For example, the cherry tomato appears to be smooth and round, but when tasted suddenly squirts out and can be shocking. So perhaps a slice of tomato is better than a whole cherry tomato.

There are a few other strategies that might be worth trying. For example, if someone likes barbeques, then try using that as a way in. Perhaps if they like having a barbequed burger, they may still eat it/not notice it as much if it has a thin slice of tomato/leaf of lettuce etc. Or, if they like picnics, then bring along a new food to try. They may be in such a good mood that they try it to keep the good mood going. In my experience, using special meals like picnics and barbeques are the best way of introducing new foods.

When I was younger, my limited diet made it hard for me to go anywhere. And when I did, I often felt a bit silly ordering something that was meant for younger children, or asking for it with x, y and z left out. In the end, it gets to you and you just think “I don’t want to seem silly, so I will order it, and just leave the bits I don’t like”. But then you find that there is a lot left, and if you still want the strawberries for dessert, you have to finish more of your meal, and so you try. Here, social pressure has led me to expose myself to new foods, and a desire to get the reward has made me try it.

Another example would be the fact I love to go skiing in Germany, France and Switzerland. And on the continent they have a much more unusual menu. Therefore I know that when I go, I will have to eat whatever food is put in front of me – otherwise I will be dreadfully hungry. This situation can be a very useful one, because there is nothing you as parents can do to crack, and they will just have to try the new food or become really hungry and not have the energy to do what they enjoy.

But I have to say, overall, if there was one thing that got me to eat most things, it was social pressure. People making comments, or implying things, or me wanting to seem good made me try new things, and keep eating them. So, if your child has this sense of wanting not to stand out, and wanting to please, then this can work very well.

Finally I would like to point out that my restricted diet hasn’t done me any lasting harm. I’m a lot better than I was and I think that a lot of children like me gradually improve over time.

Hope that helps

Joshua – an incurable tomato hater

Coming out of the aspie closet

One of the many hard things I had to do in my life was tell my friends I had Asperger’s Syndrome. Why? Well I didn’t know what to expect, nor did I know how to tell them. So here are a few ideas to try and help with that.

Firstly, there is just coming out with it, the main problem I have had with this is that not many people know what autism is, and even fewer know what Asperger’s Syndrome is. So it then leaves me with explaining it all. So I tend to ask, “have you heard of autism?” If they have, then I ask them “have you heard of Asperger’s Syndrome?” If they have, then I just say I have that, if they don’t, then I say I have a mild version of autism (yes, I know it is a crude description, but most people aren’t susceptible to a half hour lecture on the differences between autism and Asperger’s). If they don’t know what autism is, then I just say that it means I have trouble reading social cues, faces, find making eye contact hard, etc. (again, I know it is crude)

At the other end, there is just not telling them. I personally don’t think this is a good idea. I think that it can have bad effects in the long run, and if you decide that you want or need to tell them later, then it creates the “Why didn’t you tell me this earlier? Don’t you trust me?” problem. However, I will admit, for some rather closed minded people who you are sure will treat you like you are some sort of freak, then I can see why this would be a suitable option.

The middle ground is telling them that you have some sort of thing related to autism, down-playing it, saying it isn’t much, and see how that goes. When you are confident that their reaction will be positive then you tell them a little more and build up. This method can come as less of a shock, and you often avoid people treating you differently, but it is a bit long winded, and it does make a big deal of it, which may not be desirable.

So, what to expect? The first thing is that some people may treat you differently. When Anna told one of her friends at Cambridge she had Asperger’s syndrome, his reaction was, “I am going to pretend you didn’t say that because I don’t want to treat you differently”. To be honest, I find this insane, getting a diagnosis of autism or Asperger’s does not make you a different person, it just lets you know you have these characteristics at these levels and that tends to be referred to as Asperger’s syndrome. But for some unknown reason, some people react like this.

I remember that when I told one acquaintance I had Asperger’s he reacted by saying that I was making it up, and that I was attention seeking, and that I should get over it and accept that I am normal. This denial of Asperger’s by others can be upsetting, and can also make it harder for you to get used to the idea of having Asperger’s Syndrome. For this reason, I usually advise postponing telling people (bar family and one or two close friends) until you are used to the idea yourself.

Obviously the worst reaction is treating you totally differently. Sometimes it can be good to be treated differently (for example, not expecting you to make eye contact), but unfortunately, more often than not, people have the wrong idea about Asperger’s Syndrome and so you get treated either as mentally retarded or as a savant, when neither is accurate. The only thing I can think of that would work here is trying to re-educate them about Autism and Asperger’s Syndrome, by explaining what it really means in terms of how it affects you – its impact on the way you think and act. Then over time, hopefully their attitudes will change.

Of course, the best way it can go is for them to just accept it and see that you are still you. Although this isn’t as common as would be desirable, it often shows you who your true friends are.

As I say, I tend to opt for the telling them straight out, and if necessary, tell them a bit more about what it is, and that works for me. But it may not work for you. I think part of the reason it works for me is that I appear normal, and so they just assume I may be different in a few minor ways.

Good luck

Joshua Muggleton – closet remover