Monthly Archives: April 2014

The use of Language.

Nearly anyone could tell you how important language is; not just for practical communication. The words we use have the power to change and sway people`s perceptions of the world around them.  For example, it is a well-known fact that every politician who has ever existed has lied to the public at some point.  The ones who get away with it are either (a) so good at it that you don’t even realise you are being lied to, or (b) the ones who can phrase it in such a way that you don’t even mind that they are lying to you.  With the right choice and use of language you can manipulate people to feel virtually anything.  And that is why the words we use to describe other people are so important.  I have talked in the past about being annoyed when people find words like `disabled` offensive.  But I have also said that some words are created simply to de-humanise others, or to separate people from the rest of society.  The issue of words such as `disorder` or `condition` are very controversial, and I am not talking about these words.  What I am talking about is the choice of words lots of professionals and media people tend to use in reference to autism.  Most of this seems to come out of the U.S. but you do come across people from all counties using phrases like these.

The kind of words and phrases I am talking about are things like `epidemic` `sufferer` `disease`.  Now, none of these words are offensive on their own, or when used in their proper context; if you suffer from something, or have a disease, that`s fine, you wouldn’t get offended if somebody pointed it out to you.  But if you are autistic that simply means your brain lines-up differently to other people`s.  So to imply that I am diseased simply because I have a different way of thinking and feeling than you do, manages to make you sound both deeply, deeply stupid, and also very intolerant.  Also, the use of the word `epidemic` implies something that is spreading – autism isn`t `spreading` – more people are being diagnosed because we have a greater understanding of autism now; the same as every condition that has ever been discovered appears to become more prevalent once we have a better way of testing for it.  People will use phrases like `battling autism` and the `fight against autism` – all terms like this can do is breed anger and resentment – you are battling and fighting, but against what? Against the way your child`s brain works?  Where can all this anger and fighting actually get you to?   It seems as if the anger just goes round and round in one big spiral, achieving nothing.  It is not a war, you are not battling anything; autism is just the way people`s brains work.

A lot of the language around autism does seem to be extremely confrontational and aggressive; as if it is some disease spreading around between our children that must be fought off at all cost.  Of course there are negative aspects to autism – you`d be a fool to say that there aren’t.  And maybe in certain situations you might struggle to find the positives, but the majority of people can see both positive and negative things in their autism.  Autism is far from a disease; in reality it is a way of thinking, and a way of feeling, and a way of seeing the world.  It comes with its own set of challenges, and some of the positives might not always be so easy to see.  And even though autism doesn’t always define autistic people, it is a massive part of who we are.  A lot of people seem to believe that the child, and the` autistic part` of the child, are completely different, and they go on about wanting a cure, without seeming to realise that their child wouldn’t be the same person if they changed from being autistic to non-autistic.  And it is the same thing when you use language like `diseased` or `epidemic` or talk about `waging a war`.  You are not using these terms about some separate, invasive element – you are talking directly about a group of people.  And even though I believe in listening to everybody`s opinion, I think you need to have at least a basic grounding in a subject before you talk on it.  So I think if you use words like that – words that prove your ignorance – the best thing you can do is stop talking, go and read a few books, and come back when you are qualified to join in the conversation.

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

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Excuses Vs Reasons.

Autism is not an excuse – it may well be a reason – but it is never an excuse.  What I mean by this is, if something occurs such as a meltdown in a public place, you don’t need an excuse, you have a perfectly valid reason for your behaviour.  You can choose to share this reason with the people around you or not, it’s up to you, it doesn’t matter, it`s none of their business anyway.  But there is a fine line between things that you genuinely can’t help, and creating excuses for things that you can help.  A lot of people claim that they get in to trouble socially because more people aren’t autism aware.  But sometimes I think that the people who need to be most autism aware are the people with autism themselves – I say this because we need to be aware of the impact we can have on those around us – of course some people can’t be aware of their own behaviours, much less control them, and these individuals don’t need excuses, because they have perfectly good reasons – but if you have autism, and you know you have a tendency to offend people, but want to maintain your friendships, just try to think about what you are saying before you say it.  Don’t think to yourself `would I find it offensive?` think about what people may have found offensive in the past, and then decide if you want to go ahead and say it.  I am not for one second trying to say that this would be easy, but if you don’t try to think about the impact of what you are saying before you say it, then don’t be surprised if some people react negatively to what you say.  Having autism doesn’t give us free-reign to say whatever we like to people.  It might be thought of as cute if a child does it, but if a grown man or woman goes around telling everybody exactly what they think of them – we are probably going to get in to trouble at some point.

  I have had a lot of people tell me that they don’t struggle to start friendships or relationships – but maintaining them is almost impossible.  And largely they can’t see what they have done wrong.  It is very, very rare that an argument is ever entirely one person’s fault.  We all know that autism, by its very nature, influences our behaviour, so if you are in a friendship or relationship the person probably knows that from time to time something you do or say is out of your control.  But you also need to be aware of the impact your behaviour may have on them – for example, if you move in with a partner and you know that every time you get in from work you are so overwhelmed by all of the contact and social interaction of the day, that you often end up having outbursts if you then have to talk with your partner, you should explain to them that you need half an hour alone, rather than having to talk to them straight away and risking having an outburst, and shouting at them.  They might be perfectly aware that you have autism, but if you don’t explain how it affects you, what can they do to help?  You need to talk to the neuro-typical people around you that you are close to, and you trust.  Everybody in life has to compromise a bit.  People who go through their life saying `this is who I am, I don’t change anything for anybody` are either liars, or are very difficult to get along with.  To maintain any kind of relationship in life; be it a friendship, a partner, or a relationship with your own family, we have to be willing to compromise – that is the foundation of all healthy relationship’s – whether you have autism or not doesn’t come in to the equation.  Obviously with autism, our behaviour may be a lot more difficult to change – I can say that from my own experience – but we would be incredibly selfish if we didn’t even try for the sake of the people we care about.

One thing that you have to think about is how much the neuro-typical people you are close to might be compromising, and accepting parts of your behaviour that they find difficult to live with; maybe they put up with your outbursts or sensory overloads, maybe they deal with the fact that it is harder to go out and do things spontaneously, and maybe they restrict the number of their possessions that they leave around because they know you need your things around you.  There might be all kinds of things that they are changing or holding back – compromising isn’t easy for anyone, whether they are autistic or not.  If the people we care about are doing things to make our relationships easier, then we should try to do the same.

Obviously you might not be able to tell by yourself what it is you need to do, in which case, don’t be afraid to ask people for help.  You could ask people you are already close to what they think you can do to improve new friendships or new relationships.  You can ask people if there is anything that you do that annoys them, and then change it if you can.  The people who love you may be prepared to overlook or accommodate things you do, but not everybody will be. It is not about making yourself any less autistic, it is simply about trying to make your life easier, and about being able to maintain relationships that are important to you.

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

Awareness versus Acceptance

 

Many people argue about whether awareness or acceptance are what people with autism want from society.  Lots of people will say that an awareness of autism is fine, but people can be aware and still not accepting.  Virtually everybody thinks they know what autism is, but that doesn’t stop people being offensive.  And some people argue that acceptance suggests that it is up to the neuro- typical people to say `Oh, we accept people with autism` as if NTs can decide what types of people are acceptable, as if autistic people have put forward a fairly good case and they`ve been accepted in to the day to day order of things.  My view is somewhere in between:

Awareness

  • Awareness means everybody being aware of what autism is, and having at least a basic knowledge of it.
  • Awareness is a positive thing because it will hopefully lead to greater understanding, easier access to services, and make life easier for autistic people.
  • The vast majority of people are already aware of the existence of autism, even if they don’t fully understand it.
  • Awareness can help improve the lives of people with autism.
  • Awareness can’t solve all of the problems.

 

Acceptance

  • Acceptance means people who aren’t autistic accepting autistic people and their ways.
  • Acceptance can be very positive as it might make things easier in the work-place or learning environment.
  • The word acceptance does have a tendency to give a lot of power to the people without autism, as it suggests that it is up to them to decide if they want to accept autistic people or not.
  • A lot of people don’t like the phrase `acceptance` for that very reason.
  • Does this mean that acceptance is a bad thing?  No, it doesn’t. But it doesn’t mean that it is something that you have to be careful about when approaching.

 

Taking the positives and negatives from the concepts of awareness and acceptance, I think that there is a good ground to be reached somewhere in the middle.  Most people are awareof autism to some degree – even if it is just through Rainman. Some people are acceptingof it without really knowing what it is.  For me the real key is understanding; you can be aware of autism, but not really know what it is.  Often this will lead to pity, people being patronising, or a belief that people with autism are either dangerous, or completely pointless trying to communicate with.  A lot of negative stereo-types pervade the public’s perception of autism; they are accepting yes, but quite often they are not accepting of real autistic people.  They might be aware, but in reality they are not aware of real autism, they are aware of the Medias` portrayal of autism.  That is why understanding is so important: you are aware of autism – good.  You are accepting of autism – good.  But do you understand autism?

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

Should you grieve for the child you should have had? and what I think about it.

One of the things I have often heard said – that never fails to wind me up – is that when a child with autism is born, professionals will often say `you need to grieve for the child you should have had`.  Ok, there are so many things wrong with that I am not sure where to start.  But first of all let me say – I don’t necessarily blame the parents – I think if you are a professional and you have any kind of understanding of your job, you should know that this not a good thing to say to parents.  Obviously the parents have had an idea of a child in their heads for some time before it was born; what their child will be like, things they will do with the child, and what it will go on to achieve.  And of course it is going to take some time to adjust to the fact that the child isn’t the person they`d imagined in their head. – But here is a little list of why the term `grieving for the child you should have` had is so wrong:

  • The term `grieving` is usually applied to somebody who has died – of course you might say `you need time to adjust to this, read up on it and get yourself used to the idea` but in my mind the idea of grieving for a child is something reserved solely for if it dies.  What this does is put the idea of a diagnosis of autism on a par with the death of a child.
  • Another fact is that grieving for the child you should have had implies that you won’t be able to do any of the things you had hoped to do with thischild.  And that it won’t be able to achieve or fulfil any of the things you had hoped it would.  Basically, the professionals are telling you `your child is autistic.  Abandon any hopes you had for it. `
  • There is no `child you should have had` – you got pregnant, you had a child, that`s it, end of story – it wasn’t like you had a child who died, and then someone snook in and replaced it with a living child who was autistic.  The so-called child that you are grieving for is a collection of thoughts and expectations from your own mind.  You are basically grieving for the idea of the perfect child – a child who never existed.
  • When professionals use the term`grieve for the child you should have had` in my mind they are doing nothing but affirming all of the negative stereo-types and stigmas associated with disabilities.  If the parent doesn’t have any particular knowledge of autism, they are only thinking of the worst- case- scenario, which probably isn’t anything like the reality, and therefore the professionals should be confirming that the child can still lead a happy and normal life.  Whereas when they talk about `grieving`, all they do is increase the negative beliefs that exist around disability.
  • A diagnosis of autism should be turned in to a positive thing as far as I am concerned; now you know what is going on you can make steps to – not curing – but minimizing the negative impact of autism.  It shouldn’t be used as an excuse to make the condition seem worse than it is.  Grieving for the child you should have had basically makes it sound like parents should sit there wishing they`d had a `normal` child.
  • Parents are emotionally vulnerable at this time – they might not be in possession of a lot of facts about autism.  They need to be reassured and have things explained to them.  They probably don’t understand how highly offensive what they are being asked to do is.  In my mind, you are comparing me, and what I have going on, to the death of a child.  You are saying I am not the child my parents should have had, that I cheated them, and that they need time to get their heads around the fact that I`ve been born, rather that the child they were supposed to have.  Apparently my very existence is so offensive that it needs a period of mourning.

 

I can`t speak for everybody with autism when I say this is offensive; I am speaking from my own point of view.  But I can tell you that there are not many things that I find offensive.  Obviously I don’t like things like racism, and I may get upset or angry about it, but that is not the same as being personally offended when somebody insults me – but when people talk about grieving for children they should have had, I do get offended.  But I stress again that I do understand that parents may have no idea how offensive this may be.  Yes it annoys me, but I am not blaming them – they have been given terrible advice and they didn’t know that they shouldn’t take it.  I hope that if you read this blog and you are one of these parents, you won’t be offended, but rather you will take on what I have said, and that you will try to use it to perhaps get a better understanding of why I am so offended by this concept.

 

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