Tag Archives: autism Asperger`s

Making my first phone call.

A few days ago I made a phone call. I put in the number, waited for someone to pick up, told them who I was and what I wanted, answered their questions, was passed on to someone else,waited on hold, sorted the issue out, said goodbye and hung up the phone. I know what some of you will be thinking “So what? That’s a phone call. People make them all the time. I don’t see the big deal!”. But because of the nature of this blog I know there are some of you who will be thinking something more along the lines of “Oh God that sounds awful! I hate doing that/the idea of doing that!” Due to my autism I am firmly in the second camp, and that’s why I wanted to blog about making a phone call, because – as I only realised after it was all over with – it’s the first phone call of that kind I have ever made.

I have called my family on a couple of occasions, although I don’t even like doing that, or talking to someone on the phone when they call me. It’s hard for me to put my finger on quite why I find talking on the phone so hard (even harder than talking to someone face-to-face I mean) Perhaps it’s because it is so hard to tell when I should be talking as I have no visual clues; I can’t see who I am talking to – it’s just a voice with no face attached to it. Also, when you phone a call centre the background is often noisy, and while some people might not even notice this, if you’re autistic it’s hard to filter out that background noise. And there is the issue of anticipation; if you know you have to make a phone call the anxiety and nervousness can build all day. But you have to put an end to that; you have to be the one to pick up the phone and make the call. But you also have the power to put it off which means that you can fall in to a cycle of putting it off as it’s so stressful which means you wait longer, which means you grow more stressed. The stress and anxiety of knowing you have to make a phone call can be huge. Your chest can go tight and you can start to turn over and over in your head what you might say, and what the person on the other end of the line will say back to you. And sometimes this will help to calm you, but other times it will just get you more and more worked up to the point of panic. To then have to pick up the phone, make the call, and deal with whatever it is you are calling about can be a massive task.

What seems so small, and day-to-day to some people can be a skill that it takes a life time to master (or get to grips with but not quite master in most cases) for autistic people. I am twenty two now, and as I say I have only just got to the point of making a phone call for myself. However, just because I made one phone call does not mean that I would be able to make another, or even that I would feel confident enough to call the same people back about the same issue if it were to happen again. But even if I am able to call them again, and call other people up and talk to them, that would not mean there would be no impact. My Mum (who is also autistic) has been making phone calls all her life, and can talk on the phone for three or four hours when sorting out a computer related issue, still gets all the same worry and stress that I do from the idea of using the phone. She is able to do it yes, but it still leaves her feeling worn-out, and takes a toll on her.

So I am aware that there might never be a time when I am able to use the phone with ease and free from stress, I might always get a tight chest and a sense of panic at the idea of having to ring someone up and talk to them, and even as an old man I might still do all I can to avoid talking on the phone. But now that I have made a phone call from beginning to end I do feel a certain sense of accomplishment. I know that for most people this is no big thing, but up until a few days ago it was something I had never been able to do. And I am glad that to a degree I feel I have at least somewhat got the hang of a skill that has eluded me for years. As I say, I might not be able to use that skill again next week or in the foreseeable future, but the fact that I have been able to use it even once is good in itself.

You can find my book here  : http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum.html/ 

If you need any help or advice abut 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

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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: when you plan for a change that doesn`t happen …

It’s a well known fact that change is hard for people with autism. If we are going to cope well with it we need to spend time planning for it and be ready well in advance. But what if the time comes and in fact things do not change as we thought they would? Is that a good thing, and can we just get on with our old routine as if nothing has happened? I cant speak for everyone, but for me the answer to this is No. If I have spent days or weeks planning for a change, and going over it again and again in my head, and then the moment comes and I am told it is not happening that will throw me even more than the original change would have done. I can give you a recent example of this, and attempt at least to explain why it impacts on me in the way that it does.

Last month my Mum was due to go in to hospital for surgery. She would have been in for a few days but then after she came out she would have needed looking after for quite sometime. Things would have been very different; I would have been doing a lot of the jobs, we would not have been getting as much writing and ASK-PERGERS?social media done, and my Dad would have been coming around more. While none of this is bad in itself it would have been different, and therefore I needed time to plan it and get used to the idea in my head. We talked it over a lot, planned what time I might get up, what time I might do the jobs around the house, how we might still get some writing and editing done, what I might make to eat, and just about everything else. We knew we had to plan otherwise we were leaving ourselves open to things going wrong. As far as we knew we had everything planned and set up to deal with the change that my Mum going in to hospital would bring – only she ended up not going in.

I should point out that we did know her operation might not go ahead, and in fact I was not at all shocked when I got the text from her a few hours after she had gone to the admissions unit telling me there were no beds, and she had to come home. It’s just one of those things that can happen, and has been happening more and more lately. But even though none of us were surprised at this change of plans it did put us in a strange place. We were all ready for things to change; for the normal routine to be put on hold for a while and a new routine to take its place, and now none of this was going to happen.

So what is meant to happen in this or similar situations? Are you just meant to wake up the next day and get on with your normal routine – that thing you have been telling yourself for weeks you wont be able to do. For me it does not work like that; it has been a month since my Mum was meant to go in to hospital, and I don’t think we have really got back to any kind of normal routine with work, the house, going out or anything since then. That’s not to say we have not done anything productive, but we have not done it in a routined way. We spent so long getting in to the mindset that our routine was going to change that we have been unable to change back, and get in to our old routine when there was no need for change.

I don’t know about anyone else with autism, but I can`t plan for two possible outcomes in a situation like this. I can plan for the change of routine, but that takes so much planning, and so much time to get used to I don’t have any space left to make a real plan for what will happen if that change does not take place. Just looking at this one situation, how can you make a proper plan for something that is so uncertain? It’s OK to know in the back of your mind the change might not take place, the operation might be cancelled, but what then? When will it be rearranged for? A week? Two weeks? A month? Will there be a set date for it? Or will it just be when ever they can fit it in? All these things would need a plan of their own, but we have no way of knowing which one we would be planning for until after the operation was cancelled. What about things that we decided not to do as Mum would be in hospital? Do we plan to do them now that she is not going to be in? Or would it be best to just leave them?

For me it’s too much to think about and too uncertain to plan for. I can plan for a change to my routine – even though that is hard enough – but I cant make any real plans for a change to the change. I just have to deal with that as and when it happens. But that is not easy to do; not knowing what is meant to be happening or when tends to lead to nothing or not much getting done, and the stress of this added to the stress of the change can lead to meltdowns. This has been the case over the last few weeks, and I am not to sure what we could have done to prevent it. As I say planning for something so uncertain is hard to do, and there is something of a feeling that with so much change back and forth meltdowns were bound to happen.

You can find my book here http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum.html/

If you need any help or advice abut 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

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

Why are we still hearing that more Males than Females are Autistic?

Women and autism has long been a controversial topic. For years many women were diagnosed as schizophrenic, depressed or just ignored instead of being given a diagnosis of autism. But now a lot of these women are taking matters in to their own hands, and forcing the world to look at autistic women and girls in a new light. You only have to spend five minutes on Twitter looking through their stories to see the common thread. They had a child/friend/husband with autism, or just read up on it, and felt that perhaps they were autistic, and then went to a professional to have that confirmed, and were either flat-out refused, or were told that they could not be autistic because, they had friends, children or could talk to the Dr/psychologist, and sent away again. A few years down the line the strain of living with undiagnosed autism, while trying to act and live like a non-autistic person, becomes too much, and they have an autistic crash. There are a lot of cases of late diagnoses or self-diagnosis, and as I say most of the stories follow a similar path. It should by now be clear to us that women and girls are autistic too, and that we need to take notice of this, and make sure that they can get the acknowledgement they need earlier in life. But there is one statement that is still thrown around far too much in my view, and perhaps it is one of the things holding us back.

`There are far more autistic males than females`.

Think about that for a second. It’s something I can recall hearing years ago, before anyone worked out a female profile for autism, and before the boom in autistic women coming out, and making the professionals sit up and take notice. But why do I still see it so much today? We know now that autism does not just present itself in one way. Now I don’t believe in a female/male profile per-say, as I know some men who would fit the so-called female profile, who therefore went undiagnosed themselves for years. That’s not to say that the female profile has not been a huge help and that a lot of women do not fit in to it, it’s just to say that we want to keep learning more and changing our ideas, instead of getting stuck in a whole new ridged way of thinking about things. There are a lot of autistic women out there now who would never have been diagnosed without the `female profile` though, and what it does show us is how blinkered professionals have been when it comes to giving out diagnoses of autism. When you think that we have known about autism for less than one hundred years, it seems strange that we should set such clear, unmoving statements as `There are far more autistic males than females. `

Let’s look at it this way – we hear some people in the media talk about an `autism epidemic` and about how `there was no such thing as autism in the past. ` We know that this is a silly argument. We found out what autism is, and the more we learn about it the more we can notice it in people. Therefore more people are being diagnosed as autistic. It’s not hard to work out.  And I think the same goes for the statement about more men being autistic than women, or boys than girls. We might have more males on the books diagnosed as autistic than females, but I would be willing to bet that this is only down to the fact that most of the women or girls who are diagnosed have to fight for years to get that diagnoses. It’s as if the system said “Women and girls cannot be autistic.” and then made sure it was so, and that fact would remain true by refusing to diagnose them for years. When we look at the amount of women who have been forced to the point of having an autistic crash, and losing their jobs, as well as suffering from related mental health issues due to this, it is clear that something must change.

Perhaps the first step in this would be to stop saying that more males are autistic than females, and just stop worrying about those numbers. Assess everyone on their own, and not as a male or female, and see if they are autistic.  Don’t let their gender play a part in your thinking.  We know that autism can present in different ways: sometimes in outbursts, sometimes in being quiet, sometimes in being unable to understand emotions, sometimes in being too empathetic to others to the point of neglecting yourself, and these points, along with other things, are what we should think of when we think of autism. Not one set idea that only applies to one small section of society.

You can find my new book: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34253.html

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

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

How Sensory Overload Impacts on Autistic People Part two – The Impact on my Body.

In my last blog I talked a bit about how doing events/talks, and going to do any kind of work can have a negative impact on my mind. I explained how the build-up of anxiety, added to the lack of time to rest after an event, can leave me unable to think clearly, and how it can take me weeks to even be able to pick what film to watch and to rest, let alone be able to work or go out again. But the impact of a stress and anxiety build-up and overload is not just mental, and there is also a physical side to it. I want to use this blog to speak about that, and explain what happens and how bad the physical effects of stress, and anxiety can be.

As I said in my last blog I did three events in November, all of which included talking to an audience, one-on-one chats, and busy rooms. There were build-ups of stress beforehand, and not much time to recover afterwards. But before I talk too much about these events and their impact I would like to go back, and talk about my book launch. On the night of the launch itself I was fine. I felt good and fully expected to feel fine the next day as well. And when I woke up I did feel fine, but as the day went on I started to feel worse and worse. By around eight at night my stomach felt as if it was being pulled and twisted from the inside. It felt as if it were piled with stones, and I could not even stay in one place for more than a few seconds before I needed to move to try and stop the pain building up too much. I knew full-well that I was going to be sick, and sure enough I was. In fact I was up till after three in the morning throwing up. The next day I was fine, I ate plenty and did not feel ill in the least. At the time I knew, or at least thought, that it must be some kind of physical release of all the stress that had built up before and during the event. As I said in my last blog I was not aware of feeling stressed before events, but I guess it must have been there inside – impacting on me whether I felt it or not.

I did not feel anything of the sort after the first event of last month, or the second, but the morning after the third event there it was again. That feeling of carrying around a pile of bricks in my gut. Pain and discomfort, but more than that. There was a sense of hopelessness. I knew then that the feeling was without any doubt due to the stress of the work I had been doing. It was a direct result of me going out and selling my books and doing talks. It’s hard to explain my feelings, perhaps pain most of all, to people in a way that they can understand, so you might think I am making a big deal out of a bit of stomach ache. But I have been sick and had a bad stomach plenty of times in the past, and I can tell you that this stress induced stomach pain was much, much worse than any I have ever had before.

There was a point, when I was bent over in pain the morning after the third event, where I began to wonder if I would be able to keep on doing that kind of work. Would I be able to commit to planning for an event knowing how I would be left feeling the day after? And more than that, was it worth it? I was in a huge amount of pain and I felt miserable. I should point out that despite what you might think I don’t often complain of pain. For me to react to pain at all it has to get to a point that most others would find hard to cope with. More than once in my life I have gone to see a doctor with an infection in my foot, or ear after weeks of saying only that “It’s a bit sore” to be told that it’s one of the worst they have seen, and they are shocked that I could even stand the pain of putting my shoe on, and walking in to the building. The point being that when pain is bad enough to make me feel miserable you know it must be bad.   So I have to admit I spent that morning feeling sorry for myself. But as time passed the pain began to grow less and less. By that afternoon I was able to relax and watch a film.

I realised after this that I would have to plan events better, and try to do something to stop the onset of pain like this again. I am sure that it is due to a build-up of stress. The stress builds up before the events without me feeling it, and once they are over and done with I feel the full force of the stress in a physical as well as mental form.

I know now that I need to make plans before events to try and stop this from happening, but I don’t know what will work, and the only way to find out will be to test things out. And that means that I might have to try a few things that do not work, and find myself in pain once again.

Because pain, or at least physical discomfort, is nothing new to me – I would say I feel uncomfortable much more often than I feel comfortable, at least when I am outside anyway – If I know I am going out, even if it’s to do something I enjoy, I will have pain in my gut, feel hot and sweaty, and have a tight chest sometimes for hours. And it’s not something that I ever get used to. When I used to go to Judo I would feel like that for an hour or so before going out, then after a few months of going, when most people would be getting used to it, I would start feeling that way in the afternoons, then in the mornings, and in the end I felt that way from the morning of the day before I was due to go out! In my head I wanted to go, I knew I would enjoy it, and as soon as I got there and got going I did enjoy it. But still I could spend up to twenty four hours in physical discomfort just because I was due to go out.  And for this reason I no longer go to judo.

So I don’t know what will work to rid myself of the pain and discomfort that stress, anxiety and sensory overload, can cause, but I want to do all I can to deal with this issue so that I can get out there and do my talks, and sell my book without feeling again like it might not be worth it.

Do any of you suffer from the physical symptoms of stress and anxiety?  Or the physical or emotional impact of sensory overload? If so do you have any tips or hints as to how to deal with them?

You can find my new book: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

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

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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: when you are so overloaded that you can`t even do your favourite thing …

In the past month I have done three talks about my book. One at the launch for the book, and two more for other events where I talked about my book, and autism. Unlike a lot of people I enjoy doing public speaking, and I had fun doing the talks and selling my books afterwards.  I knew even as I was doing them that it would take a lot of out me. But I have to admit I underestimated quite how long it would take me to recover. I had thought that a few days of rest might be OK, and that I could be back to normal after that, but the truth is it’s taken me about two weeks to feel like I can get back to any kind of normal routine. So why is this?  And what kind of impact has it had on me?

Let me start by saying this. No one who is not autistic can understand sensory and emotional overload. People try, and they do mean well, but saying things like “I will be pretty tired too.” Or “You will just need to crash out in front of the telly tonight.” just show how little they do understand. When you have an overload sometimes you’re so worn out you can’t even rest. You can’t watch anything, you can’t read and you can’t even make a basic decision – sometimes for days on end. I love watching films, and when I can I watch a film a day. So when I can’t watch films that is a sign that I am overloaded, and need to give up on the idea of doing anything.

This was taken to something of an extreme with my last overload. Each year since I was around fourteen I have been to a horror film festival. For the first few years I only went to see a few films, but for the last five years or so I have gone to watch every film over the four days of the festival. It’s one of the few things in the year that I do look forward to doing, and one of the few time I can bring myself to go out four days on the run. Even though I always have a good time I always feel overloaded by the end, and need at least a week to relax, and do nothing after having been out and about so much.

Normally I would make sure I was not going out the week before the festival starts, but this year I decided to go and do a talk just two days before it was meant to start. I can’t say for sure why I thought this would be a good idea. I think I just got so caught up in the fun of doing talks, and selling books that I did not stop to think too much about the after-effect. But then on the day the festival was due to start the last thing I wanted to do was to go out. All I wanted to do was stay inside and do nothing. But I forced myself to go out for the first night, and watched three good films. Even though I enjoyed the films, I knew when I got home that I was feeling much more overloaded than I normally would at this point in the festival. And when I got up the next morning I knew that going back out would not be a good idea. I don’t want to make things sound over dramatic, and it’s not the worst thing in the world by any means – I missed watching a few films, that’s all. But the point is that I was unable to do something that I enjoy doing, and something that I actively make sure I do each year.

And this is where people not understanding overload comes in. How to explain to someone something you can’t fully understand, or find the words for yourself? How do you explain that going out and doing something you enjoy, something you would even find fun when you`re there, would in fact be bad for you?

When you`re  overloaded, or at least when I am (I can’t speak for everyone with autism) it’s a case of not being able to do anything, and almost drifting around all day just waiting for time to pass so that the overload will fade, and I can get back on with my life. It might take me all day just to decide to watch a film then another hour to pick one to put on. And the likelihood is even if I did I would not be able to get in to it.  It’s as if your mind stops working as it should; you can’t think clearly, or even decide anything for yourself.  And as I say this can last for up to a week normally.

On top of that I felt angry at myself for not planning as I should have done. I ended up not going to the festival and staying at home over the weekend instead. This was the right thing to do, and I am glad that I decided to do it, but I still feel as if I should have known better than to end up in that situation. Doing a talk and then dealing with all the one-on-one interactions that come with selling books took a lot out of me. More than I thought it would do.  And hopefully I can use the mistakes I made to learn more about myself, overload, and how to plan my work in future.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

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

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

My new book and why I wrote it.

I have a new book coming out on the twenty first of this month. It is called Communicating better with People on the Autism Spectrum – 35 things you need to know. This is a pretty self-explanatory title. In the book I list 35 things that I think it is essential for autism professionals to know when they are communicating with autistic people. I wanted to talk a little bit in this blog about where the idea came from, and why I thought it was important to write.

Throughout my life I have had quite a few dealings with professionals. Some of these have been great. They have been essential even to helping me overcome problems, and get the best out of my autism. But increasingly, as I have grown older, I have become more and more frustrated when meeting with so- called autism professionals. I have been faced with a baffling lack of knowledge, concerning even the most basic aspects of autism. I have been in meetings that have run for almost three hours, and over-all been left with a feeling of frustration, disappointment and confusion at the conclusion of these meetings. As I could feel myself getting increasingly angry about these issues I decided to write something to channel that anger and frustration in a way that might be constructive, so I wrote an article for the Guardian to put out in a health and social care blog. The idea being that professionals would read this article and realise some of the things that they could do, or could avoid doing, in order to make life better for people with autism. I wrote two related articles which did well, and received several thousand shares. It also led to me being contacted by my publisher via twitter with a request to write a book that would be an expansion of the article. I was more than happy to do so because to tell the truth I had a lot more that I felt I needed to say on the subject.

When I sat down to write the book I didn’t want to write something that was merely going to criticise professionals, and tell them how bad they are at their jobs. I wanted to write something that could be read by people who are good at what they do, but who understand that as people they may not think of everything, and there is always something to learn; professionals with enough experience to know that they can’t look at things with an autistic mind, and that it is OK to take advice from someone who can. But more than this I wanted to write something that if it got in to the right hands would mean that less autistic people would be left with those feelings of anger,confusion and frustration that I experienced after some of my more unsuccessful meetings with professionals. Because that is the thing, the professional who presided over the three hour meeting for example, was not a bad person. They were newly qualified and probably didn’t understand that I had refused a break an hour in as I assumed it would be a ninety minute meeting as originally planned. Unfortunately the meeting ran over by a significant amount of time. I wasn’t offered another break and there was an incredibly noisy event going on just outside the office in which my meeting was taking place. It was one of the hottest days of the year and I wasn’t offered a drink as the meeting progressed. What makes this even worse is that my Mum had contacted them before we went and requested that I be seen by someone with a good understanding of autism. The meeting itself was shambolic. But my point is that this wasn’t due to the professional themself being vindictive or nasty, it was due to them not understanding. They made mistakes the same as any newly qualified professional would do. It is just that in this kind of job when you make a mistake it is the autistic person who ends up suffering.

So in short, I decided to write this book to help professionals and autistic people. I would like to think that even the best professional can get something from the book, and this might in some way help other autistic people in the future.

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

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

And here`s the link to our new E Book Autism & Animals – the benefits of animals for autistic people https://www.amazon.co.uk/dp/B01GO1N1X6

Light it up Blue – but for who?

Why are we asked to Light it up Blue on Autism Awareness day?  It’s something not a lot of people take the time to think about. All around the world buildings are lit up blue, but many people don’t know what the point is. They know it has something to do with making people aware of autism so they assume it’s a good thing, and think no more about it. So why are we asked to Light it up Blue during Autism Awareness month?  And is it a good thing?

The idea behind Light it up Blue comes from the organisation Autism Speaks, and that’s something I will address below. First of all why blue? Well according to the co-founder of Autism Speaks, Suzanne Wright, it’s because four times as many boys as girls are autistic. Now putting aside any feelings I might have about Autism Speaks for a moment, let’s say that they created Light it up Blue with the best of intentions.  Even if they did we have moved on from the idea that autism is something that only, or even mostly impacts on males. I get angry now when I hear people talking about how few girls have autism.  What I say is that only a small amount of women who are autistic have been diagnosed.  It’s not about male or female autism.  It’s about how that autism is shown, or how well it`s hidden i.e. coping strategies.  My view, and the view of an increasing number of autism experts is that it is likely just as many females have autism as males. There is nothing wrong with women using the colour blue, it’s just a colour after all, but if the idea of the movement comes from something we now know not to be true, then whatever you think about Autism Speaks you might feel the idea is a bit outdated.

But what about Autism Speaks themselves? Well as I am sure many of you know there is not a lot of love for them among most autistic people. The feeling is that while they do raise awareness of autism, they do so in a negative way. They spread a feeling of fear, and the idea that autism is an epidemic, and something that needs to be fixed. When you watch their videos they only serve to reinforce this sense of autism being deeply negative. It is talked about in the same breath as cancer or AIDS. I feel the same way as a lot of other autistic people; awareness is a good thing as long as it is making people aware of the truth. Yes autism can be hard, and it makes my life harder than it might otherwise be, every day of my life.  But it is not a wholly bad thing, nor are autistic people broken, or in any way less than anyone else. It`s fine to tell the truth about the parts of autism you find hard, but to say that autism itself is bad, and that everyone who is autistic is suffering, and needs a cure is not OK.  I don’t want to turn this in to a blog about Autism Speaks, but it’s worth taking the time to look in to why a lot of autistic people don’t feel Autism Speaks is speaking for them.

The issue for me is this, that most people who Light it up Blue don’t think about any of the things I have just talked about.  All they want is to do something good, something that will help someone in their family, or other autistic people. So I don’t want anyone to think I am having a go at them, or that I will look down on them if they do Light it up Blue! The point of this blog is this – try and think a bit more about why something is being done. What the meaning behind it is, and if that is the best way to help autistic people. I am not saying I have all the answers, but if a lot of autistic people themselves have an issue with something that is meant to benefit them, then it might be worth thinking of something new. Without all the facts and figures I can’t comment on how much an awareness day/month, or any one campaign helps the day to day lives of autistic people. But what do you think? Is it good that the most prominent thing on autism awareness day is run by a charity that a huge number of autistic people don’t like at all?

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Bonfire Night

A guest post from Jane 🙂

Bonfire Night

Many children/adults with autism may look forward to Bonfire night and want to join in, but still struggle with the sights, sounds, and smells.  Others may dislike the whole event, and just wish it would go away.  Either way, it can help to prepare and support the autistic individual through this time to minimise any stress that may be experienced, and reduce the risk of meltdowns, which can be distressing and exhausting for all concerned.

  • Prepare your child based on their level of understanding – talk to them, watch programmes about Guy Fawkes and the gun-powder plot, write/draw about bonfire night, make collages – anything that you feel will help to get the information across to your child about what bonfire night is, and what might happen.
  • Make a calendar and do a countdown to Bonfire night – this can be a very visual thing, where the child ticks off the days – I used to draw and cut out fireworks that my son had coloured in, and we would stick them in a row on the wall, removing one each day until November 5th.
  • Prepare your child for the noise by playing a DVD or CD with the sound of fireworks on – you can do this very quietly at first and then gradually increase the volume. If your child is doing something they enjoy with this noise in the background, it can help to desensitise them to the noise of fireworks – maybe not completely, but it can certainly help them to be not quite so distressed by the noise of the real fireworks.
  • If your child wants to join in the activities but is experiencing anxiety, the above tips should help.  Also, if they are going to a bonfire, maybe let them wear ear muffs to drown out some of the noise, a peak cap to block out some of the visuals, and stand further back from the display to cut down a little bit on the other sensations.
  • It can help to have a set time of arriving and leaving so the individual with autism can enjoy the event, but not be exposed to that level of sensory intensity for too long.
  • When returning from a firework display the person with autism may need peace and quiet, and time to themselves – don’t mither them with chores or homework, just leave them alone.
  • If the person with autism prefers to stay home you can keep them occupied with a calming activity, may be centred around their special interest if they have one.
  • They can still wear headphones/ear defenders in the house, or turn the music/T.V. up to block out some of the noise.
  • If the individual is experiencing sensory overload then turning up the volumes may not be a good idea, and trying to keep everything calm and low key can help.
  • If the autistic person can tolerate the smell, then use aromatherapy oils such as Lavender, which can be calming, and also help to mask the smell of smoke and burning that pervades our homes during this time.
  • In the days leading up to Bonfire Night, and the days following avoid going out with the person after dark as people tend to light fireworks for days before, and days after November 5th.
  • The sensory overload experienced by many during this time of year can lead to meltdowns.  If you as an individual with autism, or a loved one with autism has a meltdown during this time it will be understandable.  However, it is possible that the meltdown may not occur until sometime after, when all of the fireworks have stopped, and things seemed to have returned to normal.  This is due to a build-up of emotions during this time, and the trigger for the explosion may be something seemingly small and unrelated – so be aware of this and be patient.
  • Sensory overload can cause some people with autism to `self-harm` as a direct response to their stress levels.  Following some of the above advice should help to minimise this risk.  If self-harming does occur then you need to deal with it in a calm manner so that you don’t add to the sensory overload.  If you are the person with autism who is self-harming then please seek help from someone you trust, or the National Autistic Society on how to deal with this. I would suggest doing something that you normally find calming, which can be a distraction from the cause of your distress.
  • http://www.autism.org.uk/living-with-autism/understanding-behaviour/challenging-behaviour/self-injurious-behaviour.aspx
  • Animals can experience the same level of fear and distress during bonfire night, and it can help the person with autism to spend time with their pet (if they have one) or someone else’s, as animals can be a very calming influence for some people with autism, and in this situation they could help each other.
  • The above are just a few tips which may help you as an individual with autism, or a loved one with autism to cut down on sensory overload, and the risk of having meltdowns.  I hope you find them useful, and please do share your tips with us in the comments box below – the more tips we can share, the better we can support people with autism at this time of year   Jane xxx

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