Tag Archives: ask-pergers

Autism, Illness and Meltdowns:

The signs are all there – so why can`t I recognise them?

I normally have an outburst before I get ill.  It doesn’t mean I get ill every time I have an outburst, but it does mean that if ever I am coming down with something, in the days before it fully becomes apparent that I am ill, I will have some kind of meltdown or outburst, or at the very least be snappy, and even more short tempered.

I find it hard to recognise when I am feeling ill.  And so where a lot of people would say that they are not feeling too great and perhaps adjust what they were doing to suit that, I just carry on as normal and my negative feelings come out in other ways.  It might seem strange; how can you not know if you are feeling ill?  But what you have to understand is that with autism comes stress and anxiety, and with stress and anxiety come physical traits that can be similar to being ill: stomach pains, headaches, and tightness of the chest, nausea and dizziness.  These are all common, sometimes daily, occurrences for me and other people who have high anxiety levels.  So how am I supposed to know when they grow worse that this is actually down to me becoming ill?  I also, as I have discussed before, have a high pain threshold.  This has a lot of bonuses of course, but also means that things like infections can take hold and become serious before I even notice I`ve got them.  It is not uncommon for me to be ill for several days before I actually realise it.  And in those days I tend to have an outburst (meltdown) This happened again recently.  I had an outburst and was short tempered for the next couple of days, and then I became ill.  The same old pattern.

But it raises questions.  The biggest and most obvious of which is `if it is the same old pattern and it has been going on for years, why can`t I spot it?  The honest answer is I don`t know.  I think it is a combination of things.  As I`ve said before, symptoms get lost.  I don`t feel pain the same way other people do.  But also I think I get so caught up in the short term impact; if I am feeling ill then things such as noise, or other sensory stuff will affect me much more than they normally do.  So I need to deal with this.  In the moment I can`t stop and think `why can I not handle so much talking? ` I just need whoever is talking to shut up so that is what I tell them to do.  My Mum tends to react to that, but I still need her not to talk so I tell her again, and things escalate from there generally.  We can both see this perfectly when we look back at it, but in the moment neither of us seems to be aware.  It is something that we both need to work on.  But I am sure you can see how difficult it is trying to spot illness in somebody or even in yourself, by how they/you speak or react to things – days before any symptom of the actual illness become apparent.

Have any of you ever experienced anything like this?  And if not how does illness impact on you, if you are autistic?

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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“You don’t look autistic …” And why Autistic People hate hearing this so much.

If you spend any amount of time on the online autism community then I am sure you will know how much people with autism hate being told they don’t look autistic. But what you might not know is just why saying this is so offensive to many autistic people, and to the parents of autistic children.

Let’s have a look at all the steps that go in to making this one of the worst things you can say to someone with autism.

  • It assumes autism has a look: Kind of the most obvious point; by saying someone does not look like they have autism you are stating that some people do look like they have autism. Therefore, in turn saying that you can spot autism just by looking at someone.
  • Dividing people: But even though you are implying autism has a look, and is something that can be spotted at a glance, you don’t think the person you are talking to looks autistic. So they can’t be autistic in the same way as those other autistics, not like the ones who look You might not mean this, but that is what it sounds like.
  • Normal:  When people say “You don’t look autistic” they most often mean it as a good thing. The idea being that they are telling you that you look normal, so to speak. But think about this – they are saying that because you don’t look like you have autism you look like someone without autism, someone in their eyes who is normal. But you still have autism. So they are pretty much saying “Wow you look so normal, for someone who is not normal.”
  • Better/less: If you are told you do not look autistic, and you understand that someone is trying to compliment you by saying this, think about what that compliment means.  As I said it means they think you look “Normal”. As if you were `less autistic` than someone else. Now what this does is firstly to play down how your autism might impact on you, but also to put a whole mass of unknown autistic people below you in their eyes.  As if you look normal, you pass for not being autistic, and somehow that makes you better than people who they can tell do have autism.
  • Identity: Some people like the idea of being able to hide their autism from the outside world.  And yes I can see how it might help, in terms of getting a job and such, but at the same time there are other people who see their autism as integral to what makes them who they are.  To be told that they don’t look autistic can be very upsetting for that reason alone.

 

So those are a few of the things that I think can be taken from the statement “You don’t look autistic.”  Am I being over-the-top, and reading too much in to it?  Well, No.  Autism does not have a look.  You can’t tell just from seeing someone if they are autistic or not. So to say to them “You don’t look autistic.” is at best silly.  And at worse offensive.  If you have said it at any point don’t worry, this is not meant to call you out, and make you feel bad.  It’s just meant to make you think a bit more about what you say.  We all say silly things from time to time, but the key thing is to listen to people when they explain why said things are offensive or rude, and to learn.  Next time, when someone tells you they are autistic just think for a second before you answer them, and try to avoid giving offence.

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

 

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 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

Employable me

(Note: I have yet to watch this weeks episode)

For the last two weeks I have been watching Employable Me – me and seemingly everyone I follow on Twitter.  I just wanted to write a quick blog to discuss some of my thoughts on the show. When I first sat down to watch it I have to admit it was with a certain amount of trepidation. Whenever I watch anything that deals with autism I always have that mix of feelings; hoping it’s going to be good, but ready to cringe if it’s not.  But I am happy to say that so far Employable Me has not made me cringe at all.

We already know as autistic people, or as the families of autistic people, just how hard it can be for someone with autism to find work. Not everyone of course, and some people have no issue getting a job.  But for most autistic people it is hard.   A lot of that hardship comes not from their autism, but from the attitudes of employers.  It’s good to see that the show deals with this.  The main point for me, and one the show seems very keen to make, is that autism will not stop you working, but pre-conceived ideas about autistic people might.  Now that being said, I know for some people their autism might stop them from being able to work, but what I mean is that not everyone who is autistic will be unable to do so.

People by and large, whether they are autistic or not, want to work. They want to feel as if they can take care of themselves, and their families, and that they do not have to rely on the state to take care of them – that they are not at the mercy of changes to benefits. Getting a job can have all kinds of advantages for anyone, but for autistic people it can also provide routine, and a sense of independence. Not only that, but it’s clear to anyone who knows anything about autism that at times it can benefit an employer to have autistic people working for them. I have written a lot in the past about the positive traits that can come with autism. Such as an eye for detail, dedication and creative thinking.  And it’s good to see that the show highlights these instead of just trying to make us feel sorry for autistic people.

Overall I am enjoying the show, and I can see why it is going down so well among autistic people. It highlights a very real and important issue that a lot of autistic people face.  An issue that lots of autistic people have been trying to draw attention to for years now.  Putting it out there in the public eye must be a good thing. Another thing that I enjoy about the show is that is manages to portray how funny things can be without feeling like it is making fun of autistic people.  It is funny in parts because that’s just how life is. But despite that is does not feel as if it is set up to make light of people, and their autism. I plan to keep watching it, and see how it goes on.  Hopefully it will continue to be good.  Let me know what you think of Employable Me down below.  Do you enjoy the show?  Tell me what you like or dislike about it.

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

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?

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

 

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?

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

Writing 2016

You might have noticed that 2015 was not a great year for writing for me. This was due to various personal reasons. I think I had a grand total of eight blogs up in those twelve months, as opposed to something like forty the year before. I failed to get my horror/thriller book edited and put out, and near to the end of the year the online magazine I wrote for changed ownership, and I have heard nothing about whether I will still be writing for it.

But this is not a blog post intended to wallow in self pity – what I wanted to do was just quickly tell you what I plan on writing for 2016.

I want to put up at least one blog per week. I might do more, but one a week should be a basic.

I want to write more for The Guardian.  I know a lot of you enjoyed the stuff I wrote for them last year, so I want to keep that up.

I want to help my Mum self publish her book on autism and animals – something I think a lot of you will enjoy, and find very helpful!

I also want to edit and publish my horror/thriller book.

Now I don’t want you to think this is a new year new me blog post. It is far from that.  In fact it is more getting back to how I used to be.  New year same old me I guess you could say. Some of you might know that I got a deal to have a new book published last year. So I aim to get that edited, and I think you will be hearing a lot more about it on here before it comes out later this year.

Overall I hope and plan to write and edit a lot this year, and I hope you will enjoy reading it.

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

Why I`ve decided to take a year out of university ….

I was due to start my second year doing film studies at university at the end of this month, but I have decided to take a year out.  There are two main ressens for this.  One is my work. I wanted more time to work on my writing, and autism talks than I would have got if I was going in to the second year of a university degree.  And the second reason is that the last five or so months have been so stressful, and full of difficult things that I need a break.  But underpinning all of that is why my autism affected my time at  university.

I have to say I got a lot of help when I first enrolled, and I can’t fault my university for the way they have helped with both my autism, and dyslexia since classes began.  But I think my conditions still made my time there harder than it would otherwise have been.  I don’t drive so to get from my house to my university I have to get two trams.  This is OK when I am traveling mid-morning to mid-afternoon, but when the lecture does not end until five, or starts at nine I ended up traveling right in the middle of rush hour.  As the year went on it became harder and harder to do both the traveling, and the lectures in the same day.  If I had a three hour class the last thing I wanted was to get straight on to a packed tram, and have to fight my way off only to get on to an even more packed tram.  And if I had got on the two busy trams in the morning I felt too overloaded to be able to pay close attention to my class.  I also found it hard to balance my university with my autism-related work.  My aim is to one day make a living from my writing so I feel that it is something I need to put a lot of time in to in order to make this happen.  But I found that even in my first year I was expected to do so much reading and work out side of the class room that it ate in to my time for writing, and planning talks. Now I do feel that if the traveling, and overload after class had not been an issue this might have been OK.  But once I had been to a class I found it hard to do anything else that day, and if I knew I had to go out to a class I found it hard to do anything in the time leading up to that.  This meant that three days of the week were spent doing nothing, but being in university. Add to that the fact that each class came with a group project that meant you had to come in on other days, and meet up with your group.   I felt I had hardly any time at all to do what I think of as my real work.

So in the end I decided to take a year out. I want to take some time to relax, and try and de- stress, but I also want to use this time to work, and write a few more books.  It took me a while to decide, but I feel now that I made the right decision.

Why I haven`t blogged for a while ….

Over the last few months I have not been blogging much, as you might have noticed.  There are two main reasons for this: one is that I have just been too busy with life to have any time to work on a blog, and the other is that when I did have time to write I had to spend that time working on articles, and books.  Without going too much in to my family`s business there has been a lot going on this year:  Death, near death, illness, and surgery.  It has been quite a hard year, but this is not a blog for moaning about things like that.  All you need to know is that what has been going on has taken up almost all of my time and energy.   Added to this is the fact that I had the second half of my first year of university to get out of the way, and it meant I didn`t have a whole lot of time left over to write.  But the time I did have I ended up spending working on books, and article.  This means that I have somehow managed to get a deal to have a new book on autism published, finished off writing my horror novel, and had quite a lot of articles on autism published.

But I enjoy blogging, and I want to get back to posting something at least once a week if I can.  So this is just a small post to say that I will try and get back to blogging soon, and to ask if there is anything you want to see me talk about on here?  It can be a general autism issue, or something about my life or ASK-PERGERS itself.

Paddy-Joe.