Monthly Archives: June 2016

Managing Sensory Overload …

I have spoken before on my blog about rest days, and about how sometimes they have to be taken even when I would much rather be productive.  But often I will only have rest days when I reach a point where they are absolutely necessary, after I have become overloaded.  Even though this might help to reverse the overload it means that I don’t have a great deal of control over when I rest, and when I am productive.  So what I have been trying this week is resting the day before I know I have something to do, such as going out, in order to ensure I have enough energy to complete the activities.  Even though I like to plan I have never been very good at planning in a way to ensure I was resting, and would have enough energy to do everything I want to do over the course of a week.  I might push myself too far on a Friday, even when I began to feel tired, and therefore not have enough energy to go out on a Saturday.

This week I had planned to go out on Thursday to visit family.  I knew that to get there I would need to use public transport, and it might be a relatively busy and noisy environment when I did arrive.  To ensure that I had the energy to go and accomplish this I had Wednesday as a rest day.  As strange as it sounds it was difficult to rest as I felt I should be doing something more productive and useful.  And yet the next day I could feel the benefits.  I felt much more able to go out and do what I needed to do than I would have done if I`d pushed myself on the Wednesday.

I needed to walk to a tram stop, travel on public transport and be in a really busy, noisy environment; interacting with people socially for an hour and a half before getting the tram, then walking back home.  And while I did feel overloaded after this I know that if I had woken up on Thursday feeling overloaded there is no way I would have been able to get up and go out, or even attempt doing this journey.

So even though it was difficult having a rest day on the Wednesday I feel that it was worth it.  When you enjoy working, then it can be hard taking the time out that you need to rest, especially if it is rest as a preventative measure.

But one thing that I am learning and understanding more and more as I grow older is my limits, and what I need to do to ensure that I stay within those.  The reality is I can’t push myself to the point of overload every day, and not suffer badly from it.  When I had to get up each day and go out to college or university, traveling on public transport and interacting with people for hours, I barely had the energy to do anything else.  Even activities such as reading and watching films felt hard for me.  And I need to remind myself at times that this isn’t because I am lazy.  It is because I am autistic, and when I become overloaded it means that I have pushed myself too far.  I am productive; I have a book coming out later this year, and I have edited and helped my Mum to publish her book earlier this month https://www.amazon.co.uk/dp/B01GO1N1X6

But there will be days when I simply sit around and do nothing.  There might be more of these than there are for most people, and as strange as it might sound I think that is one of the hardest things about being autistic for me.  I can`t work twelve hours a day, five days a week.  My mind literally starts to shut down, and I do mean literally.  It is as if a great fog closes in over my brain once I become overloaded.  I find it hard to form coherent thoughts.  I speak much less, my memory is severely affected, and I find it hard to hold a thought in my head for too long, or remember things.   Physically my body begins to feel stiffer; it aches, and I feel as if I have just done an incredibly difficult workout.  Basically when I am overloaded I am the last person you would want doing any kind of job for you.  It seems bizarre, but taking time off enables me to be more productive, and to do better work.  But if anything, I am the one who needs the most convincing of this …..

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

 

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My Discovery of Autistic Pride Day

Apparently on Saturday it was Autistic Pride day.  I have to admit I had no idea about this, and only realised it existed due to the tweets I was reading on Saturday afternoon.  This is why I am only posting about it once, and late.

Of course never having heard of it, when I started seeing people tweet about it, I wanted to find out more.  What is the idea of the day?  Why is there such a thing as Autistic Pride?  And might it be something I am interested in the nest time it comes around?

From what I can understand the notion of Autistic Pride day, or at least the way people choose to use it, is almost to counteract the effect of Autism Awareness month.  Not to imply that in itself is a terrible thing, or that all of the content put out during that month is bad.  But what you do find is that there tends to be a lot of conflict; some people want to `Light it up Blue` for example, while others are opposed to this, and there are stunts such as people locking themselves in glass boxes that are supposed to help autistic people. Overall, despite the idea of raising awareness of autism, it can be a conflicting and difficult month for anyone in the autism community, especially autistic people.  A lot of the tweets that I saw hash tagged with Autistic Pride day stated very clearly that this was not a day to raise awareness for autism.  It was not a day to raise money, or to push some cause, and it was also not a day for charities or carers or family members.  It was a day for autistic people simply to acknowledge each other, and take some level of pride in being themselves.

A lot of the tweets I saw made this pretty clear.  And there did seem to be a sense, especially with some of the younger autistic people who were tweeting, that it was a relief just to have a day where autistic people could actually take centre stage in the autistic community.  Now as I say, I don`t know a huge amount about Autistic Pride day, and what I have written above is just what I understood from the tweets that I saw.  But for me I like the notion of having a day that isn’t about awareness, that isn’t about how autism can impact on other people, and that isn’t even about a singular aspect of being autistic.  But is rather just a chance for autistic people to feel in some way part of a community of people similar to themselves.

So why would there be Autistic Pride?  Well this is just my personal view, and it will be completely different for other people.  I am not proud of the fact that I am autistic, but I am not ashamed of it either.  It is not something I had any control over so it is not an achievement on my part.  But for me, I feel that there is certainly an idea among neuro-typical people that if you are autistic, and you achieve something you have done that despite your autism, or by overcoming your autism along the way; as if I can be proud of who I am, and what I have achieved, but not that particular aspect of myself.  But I don`t see my autism as separate from who I am.  If I achieve something, for example I publish a book, then I am proud of that.  I am not proud of myself for `over-coming my autism` and publishing a book.  For me, and again this is just a personal opinion, the  notion of autistic pride is about saying that I can be proud of myself for doing things, or be proud of who I am as a whole, without discounting a huge aspect of myself, and what makes Me, Me.  If I am proud of who I am, and autism is integral to who I am, then in a way then yes, I suppose I am proud to be autistic.  And I think the notion of Autistic Pride could go some way to dispelling the myth that autism is a negative, destructive force, or a shameful part of us.

So is this something that would interest me in the future?  I don`t know if Autistic Pride day is an official event, or if it was just a hashtag started on Twitter so I have no idea if there will be another or not.  But yes it is something that I would have an interest in.  It is important to make sure that something like this doesn’t become corrupted, and end up being used by the wrong people for the wrong means – in the vein of Autism Awareness month and campaigns such as `Light it up Blue`  https://askpergers.wordpress.com/2016/04/02/light-it-up-blue-but-for-who/  The idea should always mean being guided by what autistic people want, and not by what non- autistic people feel is best, or appropriate.

For me it was nice to be able to go on to Twitter, and see people just saying that they are proud of who they are, and including autism in that.  This of course is something that you can do all year round, and you should do, but it would be nice to continue to have at least one day that is just about autistic people, and not the wider autism community.

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

Autism & Animals Book – and why writing such a positive book has been so hard for me …

Today, June 16th ASK-PERGERS? new book, Autism & Animals – the benefits of animals for autistic people, will be published as an E Book.  We are looking forward to the book being published and hoping that lots of people read it, and enjoy it.  The book takes a positive look at the relationships that often form between autistic people and animals, and the benefits this can have on things such as confidence and self-esteem, understanding and expressing emotions, and on our general sense of well-being.

The process has been quite stressful, partly because although we have two books published already, and Paddy-Joe has a book coming out very soon of his own, all of these have been published through a professional publisher, and so the Autism and Animals book is our first attempt at self-publishing, and it wasn`t as straight-forward as we`d hoped!  In fact we have really struggled to get printed copies, and have settled for the electronic version for now to prevent further delay in publishing.

However, these difficulties are not what has made the writing and publishing of this positive book so hard, and so stressful for me.  I don`t want to go in to too much detail, but the past year or so has been the absolute worse time of my life.  Both Paddy-Joe and I have been through some really horrendous experiences – the death of one family member who we loved more than it is possible to say, the near death of a close and equally loved family member, who remains on palliative care.  An investigation in to the death (I can`t say any more about that) and another family issue that has been extremely stressful to the point of making my son and myself very ill.  All of the above has meant time away from my autistic son for me, and a complete disruption to his routine.  This, along with anxiety and grief have caused him to have increasingly explosive meltdowns on most days.  I really can`t describe how scary they have been for both of us, leaving us with chest pains, dizziness, and an extremely low mood.   There has been more, so much more, too much to write here, and too personal for social media.  We are both exhausted, and completely burned out.  For over a year now I have felt unable to work on ASK-PERGERS? and have left most of the work up to Paddy-Joe.  I am trying to rectify this, but still most days my depression is such that I am unable to interact, even on social media.   My son isn`t feeling much better, but he has done his best to continue with our autism information and advice service through Facebook and Twitter.

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So why did we press-on with completing the Autism & Animals book (which I came so close to scrapping so many times)?  It is partly because we didn’t want to let anyone down.  Lots of individuals and families contributed their stories and experiences to the book.  We had already started writing the book before our lives were turned upside down, and we had to keep postponing completion of the book, and then postpone publishing due to our personal circumstances, and the way we were feeling.  However, my son encouraged me to continue with the book, and we worked together on it as often as possible.  With weeks on end spent at the hospital, often awake all night and all the following day, no proper food or rest it was extremely difficult.  And when I was at home with my son he was so agitated by everything that has happened and so overwhelmed that the meltdowns were (are!) coming thick and fast, and each one completely wiped us out.  However, my son kept reminding me that we had made a commitment to the people who had contributed to the book, and they were all so kind and patient, that we pushed on, and finally the book was ready to be published! We also wanted to publish while our dogs – Fred and Poppy, the inspirations behind the book – are still with us as they are quite old now, and have a few health problems.

Our lives remain extremely difficult at the moment, although not as chaotic and distressing as they have been over the past year and a half.  We are trying to get back to some sort of normality, but this is hard as many of the issues are still on-going.

I am so glad we didn`t give up, and now have a lovely book to share with you all J

The book is dedicated to my parents, and published on June 16th as it would have been their 63rd wedding anniversary, if they were both still here to celebrate.

The book is a testament to the loyalty, intuition and strength of animals.  And shows just how beneficial they can be for some autistic people.

And here`s the link for anyone who may be interested J

The book is called Autism & Animals – the benefits of animals for autistic people – and is priced at £4.99.  And I can`t believe it is finished at last!!

https://www.amazon.co.uk/dp/B01GO1N1X6

Jane Donlan x

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 & Animals Meltdowns, Dogs and Me!

Like a lot of autistic people I have always struggled with meltdowns.  Ever since I was a very young child if I grow overloaded, or become too stressed, I can have a meltdown and shout, lash out, or break things.  Even though some aspects of these are less severe now than when I was younger, meltdowns are something I have struggled with my entire life.  There is very little that can help me to calm down, or relax when I am in the middle of such an outburst.  Or even make me feel better immediately after having one.  Possibly the only thing that can is having contact with my dogs.  My oldest dog Fred is nearly sixteen, and I am twenty-one, so for the majority of the time I have been having outbursts Fred has been there.

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I can`t remember how I first found out that Fred helped to calm me down.  But I know that after a while I started going to him after I had a meltdown, just to lie down with him, or stroke him, and that this would bring me a sense of comfort.  Even though Fred doesn’t always like being picked up, or stroked he always seems happy to spend time with me after I have had a meltdown.  And when I was younger just being able to spend that time with him would help me to relax, and calm me down.  I would walk round holding him and gradually become less and less stressed as I did so.  Even now as an adult the same is true.  Nothing calms me down quicker than being able to spend some time with the dogs.  I know this is something that is true for a lot of other autistic people, and even some people without autism.  Animals can just be a calming influence overall.  And if you are somebody like me who feels stressed and anxious every single day, and always has done, then having such a calming influence, that is also part of the family, is a huge help.

My dogs Fred and Poppy are the inspiration behind ASK-PERGERS?  new book Autism & Animals – the benefits of animals for autistic people, available for pre-order now J

https://www.amazon.co.uk/dp/B01GO1N1X6

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, Overload and Bad Advice.

It is very common for people with autism to become overloaded, whether this is a sensory overload, an emotional overload, or a mixture of the two. Depending on what a person is doing in their life this may happen to them every few months, or every day.  Once someone has become overloaded it can become impossible for them to do even the most basic of tasks.

An overload will bring on both physical and mental fatigue.  This means that however much the person might want to be getting up and getting on with things, they lack the energy, or the capability to perform tasks that normally they might not even think twice about. There is one piece of advice that many people who are experiencing an overload are given by well-meaning people who genuinely believe that this advice will help – and that advice is to do more; to get out more, or to start new activities.  So what is the problem with this you might ask?  Stimulating the brain can often be helpful in replenishing peoples` energy supplies, but the problem is this; if you don`t even have the energy to do the things you want to do, then how are you meant to find the energy to do things that would be hard for you anyway, such as leaving the house to go outside.  Or doing some kind of new social activity.  The answer is that you probably won’t be able to find that energy because it quite simply isn’t there.  I completely understand that for non-autistic people a low mood can be cured by getting out and about, or trying something different.  But an autistic overload is not the same thing as a low mood.  It is like being in a video game and having a low energy bar.  If you go on to try to complete some task with almost no energy you are going to fail.  What you need to do is have a more tactical approach; plan a way of getting your energy up. Take the time to reset and relax and give your mind a break.  Cut out unnecessary sensory input, and build up to being able to do the things you would normally do.  Then if you are able to do those things you might think about expanding, and trying to get out more and do more.  But if you don`t have the energy to do more than go from one room of your house to the other all day, and even the idea of going upstairs and shaving or showering is something you have to build up to over hours or even days, then going out and doing something that even when you weren’t overloaded would be incredibly difficult, is not really a sensible way to make the situation any better.

I do enjoy going out and doing things, getting out of the house and having new experiences. But doing so always leaves me feeling overwhelmed and overloaded.  So I have to be in a good frame of mind and a good place to actually be able to attempt those things in the first place.  There is a saying that I have never really understood, and that is to fight fire with fire.  I am sure I don`t need to explain to anybody reading this how stupid that phrase is.  If you throw fire on a fire you end up with a bigger fire.  If you throw water on it you put the fire out (depending on the type of fire).  It might take a while, and it might be a hard task, but you get a result.  If you are overloaded do things that you know will calm you down and relax you.  It might be that going out to some places, perhaps to walk in the park or to the cinema at a quiet time of day does relax you.  In which case go for it and do whatever works for you.  My point is, don’t be surprised if most neuro-typical peoples` response to you feeling overloaded is that you need to get out of the house more, or you need to be doing more things.   It is not that the people who suggest this are stupid; this probably works for them, or their non-autistic friends because they don`t experience overloads in the same way that you or I might.  Sometimes an overload can appear to be the same as a low mood, or a lack of motivation.   But it is not that.  When I am overloaded I don’t need a motivational speech, or a meme telling me I can do anything I set my mind to.  I need to give my brain a break.  It is important to listen to the advice of those around you when you are in a difficult position, and to consider it.  But just remember, you don’t actually have to take it. You need to listen to what your body and mind are telling you, and do whatever you feel is best to make yourself feel better.

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