Monthly Archives: March 2014

Autism Awareness Day/Month

April is Autism Awareness month.  I am assuming if you are reading this blog you are already pretty much aware of what autism is, although I would appreciate it if you could share it with as many of your non-autistic friends as you can – not for any selfish reasons – simply because the point of this blog, and this month, is to raise awareness about autism.  What I want to talk about for the most part in this blog is what type of awareness is raised.  Many people have very negative impressions of autism.  A lot of the time this is because they are presented with a certain image of it, so that`s all they know.  It is the same with things such as Tourette’s or Down`s Syndrome.  There are a whole number of different stereo-types out there, but that is not particularly what I am talking about in this blog.  A lot of the time people will try and raise awareness, but they will do so in a way that is very soppy and sentimental.  Now there is a place for sentimentality, but the worry is that people will think that people with autism should be looked on with pity rather than with respect. For me the best thing you can do is simply get the facts out there – that`s what people need to know. A lot of the time people will post things that present autistic children as being nothing more than a burden, and parents of autistic children as being super-heroes for putting up with them.  Now all parents need an out-let, and most of the stuff they put up is fine, but contrary to popular belief, parents of autistic children are not super-heroes; they are just decent people and good parents who get on with their job as parents – dealing with any challenges that autism throws up is just one more aspect of this.  Also, when people say things like `people with autism are special and unique` well, everybody is unique, having autism has nothing to do with that.  There also seems to be a general feeling in a lot of areas – or certainly I get this feeling from a lot of the material I see – that people with autism aren’t members of society equal to everybody else, rather they are a group of people who need to be pitied.  I know this is the same for a lot of people who have various disabilities or conditions, but I am focusing on autism in this blog.

Below are some points relating to Autism Awareness:

  • People with autism are no more special than anybody else.
  • There is a place for sentimentality, but ultimately people need to hear facts to understand about autism.
  • A lot of the things out there seem to simply be designed to make parents feel better about themselves rather than actually help anyone.
  • If somebody doesn’t have a good understanding about autism and they read some of this material, then of course they are going to think that people with autism are incapable of doing things for themselves.
  • There are so many elements to autism – and yes, a lot of them are negative – but there are also a lot of positives to be gained, and some materials that try to raise awareness don`t really make these obvious.
  • It is important that you don’t raise awareness of autism as something that should be cured, or as something that is wrong with people.
  • When collecting money for autism related charities it is important that people don’t give you the money because they feel sorry for people with autism, and that you don’t present people with autism as being pitiable – People should give money because they want people with autism to have the same opportunities as everybody else, and not because they feel sorry for them the same way they might do an abandoned dog.
  • On that note I believe that all charities that raise money for people with autism need to have autistic people in positions of power, otherwise it gives the impression of a group of neuro-typcial people patting themselves on the back saying `aren’t we good helping these autistic people?` without having any genuine understanding of autism.

Overall, I think helping to raise awareness of autism can only be a good thing, as long as it is done in the right way.  It is a fairly sensitive issue and there are lots of ways to get it wrong, but like everything related to autism, it should be led by autistic people as they are the only true experts on autism.

 

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

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Special Interests

One of the most well-known things about people with autism is that in general they have what is referred to as a special interest. This means a large interest, and often vast knowledge, about a certain subject.  These interests could be virtually anything.  The idea of having a special interest seems to have a lot of negativity attached to it.  People think that it is an obsession or that it is unhealthy, whereas if somebody without autism has an encyclopaedic knowledge of the same subject they are just considered to be very knowledgeable and no more is said about it.  I suppose my own special interests would be films and books, although in the past I have been just as in-to dinosaurs and dragons.  A lot of people are interested in books and films; some of them have much bigger collections than me; houses full of books and five or six thousand films, and they have an encyclopaedic knowledge about literature or cinema.  So that on its own is a special interest – they are not by any means restricted to people with autism.

Now their interest in books and films is just as strong as mine, and yet they don’t have autism.  So why are special interests so associated with people on the autistic spectrum?  A large part of this isn’t actually the interest itself, but rather how some people with autism can sometimes express that interest; the majority of people without autism – and a lot of people with autism – will know that not everybody wants to sit there and hear them talk about star wars for two hours, or deliver a lecture on the processing speed of their computer, but some autistic individuals will talks endlessly, and seemingly unstoppably, about their particular area of expertise. I have encountered this myself several times.  They have absolutely zero interest in engaging you in a conversation, they simply want to talk and have somebody listen to them.  Any cues that you are not particularly interested in what they are saying go completely unnoticed.  And this is really where the negativity comes from.  Now of course this isn’t a particularly good thing, but there are ways of working with people to help them to cope better in social situations.  Because whether somebody has autism or not, learning if somebody is interested in what you are saying is a life skill that is well worth having, even if it is difficult.

 But there is a lot of positivity that comes from special interests as well; the most obvious one is that you have a subject that you are passionate about.  You can immerse yourself in it, learn more about it and gain knowledge and experience based around it.  Sometimes, like in my case, you can use your special interest to your advantage – I have now written and published two books of my own and am doing film studies in university.  So overall I believe that having a special interest or a passion is an extremely good and positive thing in people’s lives, but if you let it affect how you interact with people socially in a negative way, then it might be time to re-evaluate how much time you are spending on that particular area of your life.

 

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

Sould you get your child diagnoised with autism or not?

To most people a diagnosis of autism for their child is the first step to dealing with a lot of the problems that they have been facing.  But for others the idea of a diagnosis is akin to giving their child a label for life; one that they think is unfair to inflict on their child.  I would presume that most people reading this will have a diagnosis, or know someone who has a diagnosis.  My own personal view is that you should get yourself, or your child diagnosed, if you think they do have autism. I talked to people on Twitter and they made some points about not wanting to get very young children diagnosed, or believing that they could handle their own children’s problems better than professionals could.  I understand both these points, and even though I don’t think a diagnosis would hurt just to make sure they knew what they were dealing with, and to make sure the child didn’t have something else going on that they weren’t aware of, they aren’t the particular type of parents I am talking about.   I am talking about certain people – some of whom I have encountered in real life, and others on-line – who treated being diagnosed as autistic as though it was some kind of stigma. They looked down their nose at parents who got their children diagnosed, and acted as if they were better parents for making those decisions.  Those are the kind of people I am talking about in this blog.  I don’t think it matter what age you get diagnosed at as long as it works for both you and your family, so none of this is aimed at people who choose not to get very young children diagnosed.  But in this blog I will weigh up the pros and cons to try to understand other people’s point of view.

Cons:

  • A lot of people say that if you get your child diagnosed and therefore, label them, you are marking them out for life; people will treat them differently or maybe patronise or bully them. 
  • They also believe that their children will feel that they have something wrong with them and that they aren’t normal.  They worry that this will affect their self-esteem.
  • Some people say that they don’t want social services interfering in their family life, as they might if the child was diagnosed. 
  • A lot of parents will argue that they don’t want a medical diagnosis for what they perceive to be just their child`s personality.

 

When it comes to giving children a label – yes, fundamentally that`s what any diagnosis is – one thing is for sure; if your child does have autism and it goes undiagnosed, they will pick up their fair share of labels going through life. Depending on how it expresses itself; they could be labelled as shy, rude, ignorant, unsociable, and in some cases even violent.  This is due to the fact that issues they could be helped with – if people knew what was going on for them – go untreated because they don’t have that one label of autistic.  Also, I don’t know about anybody else reading this, but I find it pretty offensive that a parent wouldn’t want their son or daughter to be labelled with something that I have.

The likelihood is that if your child has undiagnosed autism then they will feel that there is something wrong with them.  They will feel that they don’t exactly fit in, but they won’t know why.  They may become alienated and lonely, but if they know that they have autism then they would know that there is a perfectly good reason why they don’t feel the same as everyone else, they would know that there are plenty of other people out there just like them and that they are not abnormal.

It is perfectly understandable that people don’t want Social Services to interfere in their lives – but why would they?  Unless you contact them, they won’t even know your child has been diagnosed.  And anyway, even though they may not be able to get it right every time, they are a perfectly good resource if you find you do need them somewhere down the line. 

The point about a medical diagnosis/child`s personality is a fair one; but just because your child gets a diagnosis doesn’t mean they have to change – they will still be the same child with the same personality.  Anyway, autism doesn’t make your personality, it is just a part of how your brain works.  Even though I am fairly positive about autism I have had a lot of struggles with it over the years.  I have managed to change certain aspects of it, and I don’t believe that has affected my personality whatsoever.

 

Pros:

  • Getting a diagnosis allows you to finally put a name to any issues you may have been having.  What I mean by this is, especially as you get older, you may start wondering why you find it hard to be in busy places, why you get anxious and panicky, or any number of other things.  The stress of having to deal with these things is bad enough, but if you add that to not knowing why you have them in the first place, it becomes a pointlessly stressful situation.
  • It gives you access to a whole host of services.  There are a lot of services set up to help people with autism, and your child will be autistic whether you get them diagnosed or not.  They will have all the same issues other autistic people have, but all those other autistic people will have access to the services – your child wont.
  • Also, people who get diagnosed will be able to look at other people who have been diagnosed with autism, talk to them and find out what they did to make life easier for themselves, and find out what they can do to help themselves.  If you are undiagnosed, not only do you miss out on services, but you miss out on other people’s experiences.
  • It will actually give your child a lot more self-confidence.  This is true whatever age you are diagnosed at, but especially so for children, who struggle to understand why they are behaving in the way they are.  If they can understand what it is that makes them behave in this way they actually gain a lot more confidence and self-belief, and it is easier to then tackle the bad parts of autism.

 

I still believe that being diagnosed is the best thing for somebody with autism.  If it was anything else you wouldn’t even think twice.  I think you can still take matters in to your own hands and do what you think is best for you and your family – a diagnosis confirms that you are doing the right thing – there is no need to let professionals take over.  And your child doesn’t have to tell anyone they don’t want to tell, that they have autism.  The label won’t follow them around if they choose not to tell people, but if they behave in certain ways without diagnosis, people will remember, and that will follow them around.  In my personal opinion I think it is best to get your child diagnosed as early as possible, just so it is clear what is going on.  I wouldn’t have a go at anyone who didn’t get their child diagnosed until that child was old enough to make that decision themselves.  But I just feel that in my own life, being diagnosed was a huge turning point in allowing me to get control of some of my behaviours and to become more confident.

 

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

Dyslexia real or not?

There has been a lot of talk lately about whether Dyslexia even exists.  As someone who was diagnosed with Dyslexia when I was seven, it seems very odd that people are questioning whether it exists or not.  I know it exists because I have lived with it all my life.  I know this blog is normally about autism and related issues, but I have given a bit of thought to this over the last day or so and just wanted to put my views out there. People who claim it doesn’t exist seem to be saying a couple of different things: one thing I`ve heard is that it is mostly middle-class children who are diagnosed with having dyslexia, suggesting it is something rich people come up with to make excuses for children who aren’t really that intelligent – the main argument seems to be that instead of trying to diagnose something, you should simply give the children the help that they need. It was also argued that a diagnosis wasn’t helpful and all children who struggled with reading or writing should be given the same amount and type of help.

There are a few points I would like to make:

1)      Of course mostly middle-class children are being diagnosed – you have to pay for a diagnosis – even if that comes back saying your child doesn’t have dyslexia.  The reality is that in today’s economic climate, the vast majority of people can`t afford to spend a few hundred pounds on something that they can`t guarantee will help them in the long run – but if you have the money, you spend it because you think it might benefit your child.  It is no different than anything else throughout history; middle and upper class people will often look as if they suffer from something more, simply because they have the money to go out and get diagnosis and treatment.

2)      One former teacher said that he believed debates about terminology and correct diagnosis were taking up time that could be spent helping children and coming up with ways to teach them to read and write.  Well, in a way he is actually right, but my question would have to be – if he thinks spending time on terminology and categorising peoples problems are a waste of time, why spark a debate about terminology?  It is hypocritical in the extreme.  He is right, it is better to help people rather than spend time debating what you are going to call the issues they are having, but does that mean we should remain ignorant and refuse to diagnose anybody – no, of course it doesn’t.

3)      Should all children who struggle with reading and writing be given the same type of support that dyslexics are given? Short and simple answer – no – First of all, there is a reason people with Dyslexia have specially designed techniques to help them to learn to read and write and spell.  It is because they need specific help.  Somebody without Dyslexia may pick things up faster than somebody with Dyslexia (and remember I speak as someone with Dyslexia when I say this) Why should they have to work with techniques that go more slowly than they can learn?  There is no point holding them back.  Of course it is right to give them the same level of support, and to not act as if their inability to pick something up is less important than that of someone with Dyslexia.  But that doesn’t mean you teach everybody the same.  Also, if you teach people with Dyslexia just like everybody else, the likelihood is that you will destroy their confidence.  They have a perfectly valid reason why they struggle to pick things up – it doesn’t mean that they will never be able to do it, it just means they will have to work hard.  But if you take that reason away – you tell them that it doesn’t exist, that they are just like everybody else – what does that make them? Stupid?  I am not saying Dyslexia can be used as an excuse.  People with Dyslexia don’t need an excuse – they have a perfectly good reason.

4)      Diagnosis itself – of anything – is a strange one.  Without getting too philosophical about it – does anything really exist?  Something like autism for example; everyone in the world thinks and feels things differently.  They have things they find easy and things they find hard.  They have a certain way of thinking.  A certain percentage of these people, who think and feel and interact in a different way to the majority of people around them are put in to a big category named autism.  Now at one end of that category you could have somebody who is slightly socially awkward and likes spending time alone – you could have a highly successful business man who could be the CEO of a company and make massively important deals every day.  At the other end you could have somebody who just sits in their room every day, can’t talk or look at people and still uses nappies.  Now without wishing to be derogatory towards anyone, you can see that there is a vast difference between those two individuals, and yet they are both diagnosed with the same condition, because they both share some of the core symptoms – just to differing degrees.  All you are doing when you diagnose someone is ticking off a list of symptoms that put them in a certain category and sub-category which somebody else thought up years before.  Now that might sound pretty negative, but in actual fact I am not so sure it is.  If you can put a name to your collection of issues it is much easier to get help. You can search for specific resources out there and talk to other people with the same condition, find out what worked for them and what might help you.  If you don’t diagnose it, you never really know what is going on for you, therefore you can’t get help.

5)      If you mention Dyslexia to most people, even a surprising number of professionals, they seem to think it is something to do with how well you can read.  This is nonsense.  Dyslexia has certain key elements, but depending on who you are you can have all kinds of different issues that go along with it.  Difficulty in either reading/ writing, poor organisational skills and a bad short-term memory are the most common issues, but there are many more.  People who argue that because it doesn’t affect everybody in the exact same way it can’t exist, are just being silly if you think about it.

 

 

6)      A lot of people will claim that everybody has had symptoms of Dyslexia at some point in their lives, and really they are just things that everybody struggles with – that some people are simply more intelligent and get through these issues faster.  I should probably tell you a bit about myself at this point:  I could read efficiently by the age of three, but now, even aged nineteen, my hand-writing is still like that of a very young child and my spelling is terrible.  I don’t mean that in the sense some people do, where they make the odd mistake and then go back and change it – I mean there are literally thousands of words that I still can`t spell, even to this day – many of them basic, everyday words  I was diagnosed with Dyslexia aged 7.  At this time I had an IQ of 120, which was higher than the average fourteen year old.  I co-authored and published my first book aged twelve.  At this time the only things I could handwrite were my name and a few basic words.  When I was fifteen and had my second book published my handwriting and spelling had improved, but was I still years behind the average fifteen year old.  Because I was home educated I did not have a GCSE in English, so I had to take one when I was in my second year at college.  I did get half an hour extra in my exam but I didn’t use it, but I did do the exam on a lap-top, and I managed to get the second highest mark in the class.  I finished college after obtaining the equivalent of three A* in IT.  I don’t think that one of my assignments was handed in without at least ten spelling mistakes.  I am not some kind of genius but I am fairly intelligent, yet even to this day my handwriting and spelling are absolutely terrible.  If it wasn’t for having a diagnosis of Dyslexia, and my Mum creating Dyslexia friendly strategies to help me with my spelling, I don’t believe I would have achieved any of the things in this list.  The frustration and anger that you feel when you can’t spell a word you need to spell or write for an assignment, even though you know it is only a basic word, is incredibly hard to describe to anyone who hasn’t felt it.  But I think that if I didn’t have a diagnosis this probably would have destroyed my self-esteem and caused me to get so angry I`d put my fist through the computer.