Monthly Archives: February 2016

Being excluded as an autistic writer/professional.

I am both an autistic person, and someone who writes books, and advises others on how to deal with issues around their autism. It is not that I am unhappy with being thought of as autistic, but I also want to make it clear that what I view as my job is to help other autistic people, and their families to deal the same stuff that I and my family have struggled with. I am, in short, both an autistic person, and an autism professional.

However, there is one thing I have been faced with time and time again when working with fellow autism professionals. And this is the fact that they seem to regard me more as a client than a colleague.  What I mean by this is that even if I am invited along to a workshop, talk or presentation as a professional I am treated as if I am somehow there to be helped by my non-autistic counterparts.

I was invited to an event to talk to members of the public one-on-one to try and educate them about autism.  I was there working alongside a number of non-autistic professionals. When we were not engaged with the public we would sit on chairs behind a screen, and amuse ourselves.  Within minutes all the non-autistic people, even those who had never met before, were talking away to each other. Not one of them, at any point, tried to say so much as a hello to me. My Mum and I were invited to another event and people came up to our table, and spoke to her. . The best I was favored with all night was a polite nod.  There have been several other occasions like this.where I was invited along as a professional, but treated like a service user by the event organisers, and other present autism professionals

It always makes me feel as if I am not there as a writer; someone who published two books before his fifteenth birthday. Or as someone who spends most of his time writing about autism, and giving advice on it.  It makes me feel as if I am somehow different to the other speakers or trainers.   As if I am just there because I happen to be autistic. (But by the same token) *And as an autistic person there is an assumption that  I must not want to be spoken to.  As if it`s OK to invite someone with autism along to an event, and then make zero attempt to talk to them, or to introduce them to anyone else. It is as if people assume that due to my autism I wish to be left on my own, and do not want them to interact with me at all.

I said that people tended to talk to my Mum and not me at these events.  People ask her about me, the books, and our advice service. Well that was true up until the last time we attended such an event. On this occasion she told the parents and professionals from the start that she is autistic too.  Noone sitting at our table tried to talk to her. No fellow parents came over to her in the tea break, and started chatting as they normally would. Noone came and asked her about ASK-PERGERS?, or our books.  Nothing.

It is true that autistic people/professionals might not always want to talk.   But that should not mean non-autistic parents and professionals blank them.  It`s OK to try chatting to someone, and back-off if they don’t want to talk.   Autistic people often find it hard to start up conversations, and can find themselves forgotten about, and ignored in the background while everyone else gets on, and talks away.   This happens a lot in schools, colleges and the workplace. But the very last place this should happen is at at events where autistic people have been invited along to share their expertise.

Autistic writers, autistic professionals and autistic speakers, must be thought of first and foremost as writers, professionals and speakers. Yes, as with everything else in their lives autism will impact on them at these events.  It might be true that they do not wish to talk to anyone. They might relish being left on their own. But then again they might not. They might instead feel undervalued, ignored and cut off from a world they are meant to be a part of.  Autistic people should not be forced to join in, but by the same token they should not be forced to stand apart.

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

 

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Autism and gaining weight.

This might be a sensitive subject for some, but I read an article the other day that was saying autistic people have a tendency to gain weight, and that most of us are overweight. It got me thinking why might this be? And is it an issue or not? I believe that if is this true then a lot of it will be down to routine and eating habits. Nothing ground-breaking there – that’s what most weight gain is down to – but how might being autistic impact on this? Below are a few of the reasons I think autistic people might gain weight, or find it hard to lose the weight they have gained.

(1) Not caring about appearance: The first thing that needs to be said is that none of these points will apply to all autistic people. There are some autistic people who care greatly about the way they look. But there are also a large number of people who could not care less about how they look, or what people will think about them. There are two main reasons people like to be slim, and in shape. One is for their health, and the other is for their looks. Being motivated by looking good is not a bad thing; it can push people to eat right and work-out. But if you are happy to go through life without caring about how you look, or what others think of you, then gaining weight is easy to do.

(2) Only eating certain foods: There are some autistic people who feel unable to eat lots of different foods. They have a few things that they are able and happy to eat, and they have these same foods day-in, day-out for years. If these things consist of pizza, ice cream and chips then it makes sense that they would gain weight. The thing is, it’s not a case of someone being a fussy eater – there is a lot more to it than that – so even if someone wishes to lose weight, changing what they eat might be extra hard for them to do.

(3) Fitting in the time to work-out: If you are autistic and have a carefully constructed routine that helps you get through your days, then it’s hard to change that, and work something else in to it. You have to decide how much you want to work-out, and when you want to do it. And you then have to change your routine, and fit it in.

(4) Where to work out: Talking of working-out, what about gyms? They are noisy, busy and packed full of people who wish to talk to you about their workouts. It might not even be that the autistic person does not enjoy the gym; they might just not feel able to go all that often due to sensory overload. It could be that they plan to go, but have a stressful day and cannot. So what about running? Well again you have to go out and about, and if someone suffers from anxiety, or they are worried about bumping in to people they may be expected to talk to then this might be hard for them too. A lot of autistic people, including myself, do the bulk of their work-outs at home.

(5) Stress eating: It is well known that many people eat when they are stressed out – not just autistic people, but most people. I am sure there are all kinds of psychological explanations for this, but I don’t know them. If you have had a bad day then sitting down to a nice meal, and something sweet afterwards is a great way to end your day. But eating to help with stress or anxiety is not a good thing, and if you’re autistic and likely spend a large part of your time stressed or anxious, it is a recipe for disaster. If you feel anxious and stressed on an off all day, and every time you do you eat something, no matter what it is you’re going to gain weight. But if that something is crisps or chocolate then you’re going to gain a lot of weight.

(6) Finding it hard to break from routine: I talked about how it might be hard to find the time to fit something new in to your routine, but what about cutting out old stuff? Well if someone is in the habit of getting a takeaway once a week it might be hard to get out of that habit. But if that person is autistic then changing an established routine is going to be even harder. Making changes to diet and where and when you eat is not easy, and everyone finds it hard, but if that routine is a key part of how you get through each day then it’s going to be even harder. It might be best if you are autistic and looking to lose weight, to change things bit by bit. Think about, and plan the changes out well before hand, and don’t just rush in to them.

As I said at the start, not all of these points will apply for all autistic people. Everyone is different, and not every autistic person will struggle with their weight. Also it is important to say that being overweight does not have to be a bad thing. If you are happy with the way you are then I would say don’t worry, just relax. That being said even if you are happy with the way you look you might want to think about losing weight for the sake of your health. If you do want to change your weight then think about some of the points above, and work out if any of these issues are what is stopping you from losing weight, or making you gain weight to begin with.

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

Twitter https://twitter.com/ASKPERGERS

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And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Autism in the Russian Golden-Age of Literature

I can’t claim to be any kind of an expert on classic Russian novels, having only read six works from that time and being part way in to my seventh as I write this. But this blog is not meant to be an insight in to the texts. Not being qualified to dissect the writing, or to fully review the books themselves I will not attempt to do so.  Instead what I would like to talk about is two cases in which I have read about a character who I believe, if they were written today would be thought of as  undiagnosed autistics. The two in question are Prince Myshkin, the main character in The Idiot by Fyodor Dostoyevsky and Prince Nikolai Bolkonsky ( the older Bollkonsky) one of the main supporting characters in War and Peace, by Leo Tolstoy.

First of all Myshkin:  Prince Myshkin is a young man who is though of, and described as an “Idiot” by those around him. The main reason for this being that they assume he lacks intellect as he does not understand, or often comply with the strict set of social rules that govern his class.  He talks as readily to a footman as he does to the master of the house, and often has no clue he is doing something othes would think of as socially odd.  He seems to have emotional intelligence, but the way he expresses it strikes those around him as odd.  His desire to help everyone he can means that he is often open to being manipulated, and he tries to see the good in everyone.

Dostoyevsky wanted to create a truly good man to sit at the heart of his novel, and see the effect this goodness, and above all truthfulness, would have on the society around him.  A society where noone says what they really mean, and everyone has a game to play.  It would not be spoiling anything to say that he has an impact on those around him, and being caught up in a society like that takes a heavy toll on him.

In short Myshkin is a smart, socially awkward man who often has no clue when he has said or done something to shock those around him. He does not try to break the rules of society, but merely by telling the truth, and believing in the good in people he stands out from those around him.

I am not one hundred per cent certain that he is autistic, but reading some of the interactions he has they are not so very different from those of Saga Noren in The Bridge almost 145 years later.

Also, on a side note, Myshkin has epilepsy, as did Dostoyevsky himself.  I am unsure if this would relate in anyway to autism, but it is interesting to read about how Epilepsy was viewed at that time.

Moving on to War and Peace and  Prince Bolkonsky:  Let me just make this quick, and run through a few basics.

Bolkonsky is a man of great intellect who was able to rise to the top of his chosen profession.  He spends most of his time since retirement locked away in his house and grounds.  He sticks to routine, and I mean he really sticks to it in a way I wish I could.  To the point where everyone else in the house knows where he will be, and what he will be doing to the minute on any given day.  He gets angry at anything that disrupts this even if it is a visit from a loved one.  A lot of the time he snaps at, and is rude to those he loves the most, and like a lot of families of autistic people they bear the brunt of his behavior.  As well as his own routine he becomes upset and alarmed if anyone else in the household does not stick to the routine he has planned for them.  Not a nasty or evil man at all, he is never the less controlling and downright rude to those he loves the most. I can recognize that, as I am sure a lot of autistic people can.  Even when his son`s goes off to join the army he finds it hard to show his feelings, and they come out more as sly jibes, and harsh words to those left behind. This in a book where most of the men openly weep, and declare their love for any and everything.

There may well be more that I am forgetting. War and Peace is a large book, and took me a while to read.  But I do know that every time I read about  Prince Nikolai Bolkonsky I recognized myself, and other autistic people in him. I felt even more than I did with Myshkin that if he were real, and alive today he would be thought of as an undiagnosed autistic. He is an army man who would have lived most of his life by the strict rules of the regiment, and he tries to recreate this in his later years.

Both Myshkin and Bollkonsky struck me as I read about them, and stuck with me long after I finished the books.  Both seemed to be good men at odds with the world around them. One who dealt with this by accommodating the wishes of others above his own, and going along with what ever seemed to be happening, and one who tried to deal with it by controlling and regimenting every part of his life, and the lives of those who lived with him.

If you know me then you know I am not a fan of diagnosing historical real-life figures as autistic without solid proof, but I think when it comes to the realms of fiction there is no harm in reading between the lines.

Perhaps both Dostoyevsky and Tolstoy knew autistic people who inspired the characters in their novels?  Perhaps Dostoyevsky himself was autistic?  He certainly shared a few traits with Myshkin. As a young autistic reader finding characters like this makes me think of all the people who have lived with autism without knowing it over the years. Partly it is sad to think of how people must have struggled in the days before they could be diagnosed.  But also it makes me smile to think how autistic people were influencing popular culture around the world decades before anyone even knew autism existed.

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Going out and about with my Parents as an Autistic Adult

I am twenty one years old now, and I know that most people my age tend to spend their time with people of the same age.  They might be away at university and living with their friends, or they might just be hanging around with them, and going on nights out. Most people in their teens, and early twenties don’t spend a lot of time doing things with their Mum and Dad, but I do – as do a lot of other autistic people I know.  So why is this?  And is there anything wrong with this?

Well first of all no, there is nothing wrong with spending time with whomever you like. But why is it that autistic people often spend more time with their parents than non-autistic people?   Firstly autistic people can find it hard to socialize, and therefore making friends in the first place can be hard.  Their parents will often know, and understand more about their autism than any friends might, and therefore be more willing to plan trips out instead of trying to do them on the spur of the moment.  For myself I know that I don’t have to make an effort to talk if I don’t want to.  If I go out then the fact of being somewhere noisy and busy might be overwhelming for me, and in order to enjoy it I might just need to not talk, or not talk a lot.  If I was out with friends this might be hard, but my parents understand and don’t try and force things.  I know that I don’t have to try and fit in the as the people I am out with understand me, and know why I act the way I do.

I never feel embarrassed to be out with my parents, but I know some people with autism might.  More so if they look around, and see other people their own age out with friends, or girlfriends.  But this is the thing, there is no reason really why it’s not OK to go out with your family.  If someone wanted to go out, but found it hard to do so on their own and was faced with the choice between not going out, and going out with their Mum or Dad then it seems odd to me that they would pick not going out. Also going out and spending time with your family does not mean you don’t have friends.  I do have friends, but I don’t want to see them all the time.  I do go out with them occasionally, but most of the time I go out with my Mum or Dad.  For me there is nothing wrong with this; like I say it is often easier to plan for, and to do than going out with other people who might not understand my autism as much.

I spend time with my family because I know that I can be myself around them, and because I know they understand about my autism.  But also because I can think logically, and I know there is nothing wrong with going out and about with your parents no matter what your age.  I could go out and make more friends, and go out with them more often, but I don’t want to. I feel happy in the way I do things now, and I don’t think that if you’re an autistic adult who spends a lot of time with their family, or goes out with them a lot rather than people your own age, you need to feel like this is a bad thing.  Do whatever you feel most at ease with, and whatever allows you to have the best time when you are out.

If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?

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And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762