Monthly Archives: August 2014

The ice-bucket challenge – Is there a right and wrong way to raise awareness?

Please note: this is not a blog addressing any issues related to the charity itself.  I understand people`s concerns over testing on animals, and the challenge being done inappropriately, but that is not relevant to the subject of this blog.

If you`ve been on-line at all over the last week or so there is no way that you can`t be aware of the ALS ice-bucket challenge.  This was created to raise awareness for Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,”  Thousands of people from across the world have filmed themselves pouring buckets of ice over their heads – people such as George Bush, Stephen King, and Cristiano Ronaldo, along with a host of other celebrities.  According to the official statistics it`s raised an incredible amount of money, but several people have complained about it.  These people say that the actual message is being lost, and that pouring water over yourself is a silly way to raise awareness.  From my point of view I simply looked at what people who suffer from the condition have to say – and everything I read by people with this condition, and their families, was extremely positive.  The idea that you could get hundreds of celebrities from all over the world to endorse your charity, would have been impossible without the use of the internet.  Of course some people have simply picked this up as a thing to do without actually thinking about the message behind it, but they still mention ALS in their videos – the message is still getting out there, whether people realise they are spreading it or not.  The use of social media to get so many people involved really was a stroke of genius from the people who created it.  But it leads to the question, is this the right way, or the wrong way to raise awareness?

If the charity raises money, and they get endorsed by hundreds of celebrities – all of whom are probably followed by millions of people on-line – how can this be a bad thing? The ice-bucket challenge is enough of a challenge that people will feel they have accomplished something, but easy enough that anybody can participate.  It`s fun, and after you`ve done it, why would you not want to nominate three other people?  If you had to do it, why shouldn’t they?  It also plays on a level of narcissism in society – some people love to be seen doing stuff for charity, much more than they actually enjoy doing things for charity.  The ice-bucket challenge lets you not only do a good act, but put it out there for the world to see.

Also, it works.  I had no real understanding or knowledge of this condition until I started seeing the videos on-line, then I googled it, found out about it, and read a lot written by people who live with it.  Now there is no way that I am the only person who has done this.  In reality thousands of people are probably aware of ALS, who weren’t before.  It is not done in a way that would inspire pity instead of respect.  It is simply saying, `we`re a charity, we need money, please donate`.  Things on the internet often go viral; whether it`s a picture, a saying, a certain activity.  They are huge – as in millions and millions of people seeing, and participating in them – in a way that things could never have been this big before.  For the most part these things are funny, and have no actual meaning or relevance behind them.  The fact that something that actually helps to change people’s lives for the better has taken off in this way, is very positive.  And even though I am usually rather cynical about things like this, I have actually found myself getting annoyed at people who criticise it.  Obviously if you were already fully aware of ASL before, and it has already affected your life in some way, this may seem like a silly way to raise awareness.  But as I said before, the voices of the people who actually live with this condition are what matter the most, and they – to the best of my knowledge – are firmly behind this.  I have read several interviews with people who either have ASL, or have a family member with this condition.  They all say that it is an under-funded, virtually unknown disease that has a devastating and terrifying effect on people`s lives.  A few people giving quietly is good, but it won`t have anywhere near the impact that a challenge like this has had.  The fact is, people who are going through this disease endorse this challenge, and in reality, their opinions are the only ones that truly matter.  I can`t say that my knowledge of this condition is perfect now, or that I have checked the charity out fully, and there may well be issues I discover as I look in to it in more detail.  What I can tell you though, is that virtually everybody on-line is talking about ALS – people who I never thought would do something such as tipping a bucket of ice cold water over their head, have been doing so happily – and these are not the kind of people who would do something for attention, or simply to jump on a bandwagon.  These people, for the most part, have donated money as well, and overall I can`t help but view something like this as a positive.  It seems to me like a very clever way to utilise the power of the internet.

The TV, radio, and newspapers are old-fashioned ways to get through to people. If you want to advertise, or raise money and awareness now, you use the internet.  A lot of people do all their TV watching, a large chuck of socialising, and spend much of their free time on the internet.  People can`t avoid something that goes viral – everybody sees it. Also challenges such as this seem to be much easier for people to deal with than an advert which shows the harsh realities of real life.  Things such as the ice-bucket challenge won’t cure all diseases, or solve all the world’s problems, but they will undoubtedly raise a lot of money.  People of all ages, from all of the countries in the world, will see these things. People don’t feel as if they are being put under pressure to donate money – they do it because they want to, because everybody around them is doing it.

 By all accounts, the level of money raised in only two weeks in unprecedented.  I am sure that in the wake of this many charities will launch challenges of their own, and in my view, using social media and the internet to raise awareness and money, is the future.  Is this particular idea perfect?  No it isn’t.  But can it lay the framework for charities reaching wider audiences, and raising more money in the long run?  Yes, undoubtedly it can.  And how can that be anything but a positive development?

For more information about ALS go to http://www.alsa.org/

 

 

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? 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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Injustice – would the punishment fit the crime if the victim wasn’t autistic?

One thing that is known about people with autism is that unfortunately they tend to be the target of bullying at some point in their life.  This is brought on by a combination of being different and standing out from the crowd, as well as sometimes being more vulnerable, and more easily led by those around them.  It is unfortunate how many people will target the most vulnerable in society, be it somebody with autism, somebody with dementia in an elderly person`s home, or somebody in the middle of the street having an epileptic seizure.

 In the last few week’s people fitting all three of these descriptions have been robbed, beaten up, raped, humiliated, and in several cases filmed while the above acts were taking place.  Now that – in and of itself – is a shocking indictment on society, but saying that, is it even particularly shocking?  If you`ve been watching the news recently you know it probably isn’t.  These crimes are horrible to read about, but at least once you`ve finished reading about them you know that the people who`ve perpetrated them are going to be safely locked away in prison – except that`s the problem – you don`t.  There have been several cases recently where young people with autism have been beaten up severely, and I am not talking about being bullied in school, I mean prolonged and savage attacks by fully grown adult men.  The sentences given out to these men are either a couple of months, or nothing at all.  I personally am not a fan of prisons in the way they work now.  I believe that people should have a chance to reform and be rehabilitated, but there has to be a punishment.  Saying that you are going to give somebody community service for a prolonged and brutal physical, and sexual assault on an autistic young man, because they `look remorseful` – as a judge said recently – is simply twisted – where is the line drawn?  The victim of that attack has suffered what will probably be life-long psychological trauma, as well as devastating physical injuries, and yet the perpetrators `looked remorseful` so they escaped prison.  But what if their victim had died?  And that is not a particularly big stretch – punching somebody to the ground, and stamping on their head could easily lead to death.  So what if the victim had died, and his attackers had `looked remorseful` then?  Is this the message we are trying to get across, that unless somebody with autism actually dies you have free-reign to do whatever you feel like to them?  I am not a fan of the ridiculously long prison terms in places such as America, and I have always been opposed to the death penalty, but if someone deliberately sets out to hurt another person, and endanger their life, then regardless of the attacker’s age and circumstances, surely there should be some punishment?

There are other cases such as people who work in nursing homes, who assault and steal from elderly residents with dementia: punching them, kicking them, humiliating and degrading them in every way, and yet when the prison term comes back its three or four months.  The reality is that if you cheat on your benefit, or taxes you are liable to spend a lot more time in prison than if you beat-up one of the more vulnerable members of society.

 I am not saying that people should always be given twenty year sentences – of course you have to keep things in proportion – but assaulting the weak and vulnerable for your own entertainment is one of the most despicable things you can do.  If judges can`t hand out decent prison sentences for this, what is the point in having a prison system at all?  For me it is no different than all the celebrity paedophiles who have recently been exposed.  They got away with what they did for so many years because children in the U K were treated as second-class citizens.  They were able to do what they wanted to do with immunity for so long because they knew in reality that society – although it may have been shocked, and appalled if it had found out about the crimes – did not care enough to take any one child`s story seriously.  It may seem tenuous, but when you can read five different stories in two weeks of the most vulnerable people in society being assaulted physically, sexually and emotionally – in some cases being tortured – being humiliated and degraded, and being scarred sexually, emotionally and even physically for life, and the combined sentence for all of these offenders is under five years – and the vast majority of these will be released early – it is hard not to feel anger.

And then you go on to somewhere like twitter, and read about how people`s children have been failed by Assessment and Treatment Units, where they were supposed to be safe, but instead have been neglected and ending up dying under the supervision of the very people who were supposed to be helping them. These individuals are then failed once more by the authorities and courts, who refuse to take any kind of action against these units.   This simply reinforces the view that the vulnerable are being neglected.  People with autism are being taken away from their families to facilities hundreds of miles away which actually have no experience of autism.  Some are being sectioned, and are not allowed to see their families if they have any kind of meltdown.  The Government are also seizing every opportunity to take benefits, and support from disabled people in society – so I suppose that really clears up the first point; why is it so difficult to see people who commit crimes like this sentenced to a decent prison term?  The reason is that the Government, and the system as a whole, seem to have as much contempt and disregard for vulnerable, and disabled people as the individuals who are committing these crimes against them

Links to a couple of the stories mentioned in the blog. WARNING – they are very distressing.

http://www.dailymail.co.uk/news/article-2719825/Epileptic-woman-woke-severe-fit-strangers-laughing-filming-ordeal-mobile-phones-police-refuse-investigate.html#ixzz39poW8Mfk

http://www.autismdailynewscast.com/sadistic-thugs-who-tortured-autistic-boy-for-days-set-free-under-uk-government-initiative/14092/shanellis/

Links to some of the campaigns surrounding vulnerable people being neglected in Assessment and Treatment Units, and others being moved miles away from their families to completely unsuitable accommodation.

http://justicefornico.org/ #justicefornico

http://sarasiobhan.wordpress.com/about/ #justiceforLB

http://www.saveclairedyer.net/ #keepclaireinswansea

https://twitter.com/LSammas1995 #bringstephenhome

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? 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

 

 

 

 

Results day.

Students always get incredibly stressed whenever it comes to results day because whatever level of education they are in, they are told that the results they get will have a massive impact on their future life, and career.  It would be silly to suggest that results don’t have some impact on your life, but the world is full of people who tried to do one thing, couldn’t and went away and did something else very well.

Obviously you want to get the best results possible, but the important thing is not to become overly stressed with this.  Especially for people with autism; a lot of benefits that can be gained from college, and university aren’t purely academic.  Often people can become much more social, and independent when they go in to higher education, and being able to go out by themselves and communicate with others can open up more doors than simply getting an academic qualification.  It also improves self-confidence.  People can often make good friends, and have a lot of good memories from their time in education.  Obviously this isn’t the only important element, but if somebody has struggled in making friends their whole life, and they come out of college with a close group of good friends, then they are doing a very good job – and that in itself is a massive achievement for them.

For example, I got good grades in college, but just as important as my grades was the fact that I was travelling independently nearly every day, and I was able to become more sociable, and make friends.  Of course I was pleased with my grades, but I simply saw them as a way of getting in to university.  I wasn’t particularly bothered about the academic element of the course.  If I hadn’t got the grades I needed for university though, I would have been able to re-take elements of the course to try to bump my grades up, or I could have left and taken some kind of vocational course.  I could have simply dropped out of education altogether, and gone in for a different kind of work.

 It is also worth pointing out that whatever stress teachers try to put on your shoulders, at eighteen you are still a teenager, and whether you get in to university or not, will not define you, or who you can be.  It all depends on your skill-set.  If you struggle to cope in college maybe going straight in to university is not the best thing you could do – why get yourself in to all that debt, and put yourself through all that stress when there are other options out there – other training programmes, courses, and jobs that may be much better suited to you?   I took a year off after college to focus on my writing, and if I hadn’t done that I probably wouldn’t have set up this blog, made the contacts I have, or be writing for on-line magazines and newspapers now.

The idea of staying in education until you are in your early twenties is only a recent thing for the majority of people.  This doesn’t mean that it shouldn’t be taken up by anyone who wants to take it up, but no one should ever feel that it is the only option for them.  It is an option, and a good option, but the level of stress some people put themselves through when choosing this option is ridiculous – you’re still a teenager, so relax.  Even if you have to repeat a couple of years of college, and you are in your twenties when you go to university, it’s no big deal.  You are still young.  You can go to university at any time you want to in your life.  The idea of learning as much as you can by a certain age, and then going out and getting a job based on the knowledge you`ve accumulated over the past twenty one years, is redundant in today’s economy.  Anyway, education is a life-long thing.  The fact that you are not smart enough to do something aged eighteen doesn’t condemn you to a life-time of not being able to do things.  It just means that things might come a little more slowly, but you have to see the bigger picture – in forty or fifty years’ time, what will you care if you achieved something aged eighteen, or aged twenty?

There are all different kinds of education, and all different types of knowledge, and each of these can be put to use in one job or another.  Many of these forms of knowledge are not taught in colleges or universities, but that doesn’t make them, or their effect on your life, any less real.

 

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? 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

Create a Reward Plan for your Child with Asperger Syndrome

978-1-84310-622-7

Even though I talk about how positive autism can be a lot of the time, it would be silly to try to tell people that it is a wholly positive experience.  There can be a lot of negatives that go along with it, and I am sure if you are reading this blog you know that for yourself.

For me, when I was younger, one of the biggest negatives was the frequent meltdowns I used to have; shouting and being aggressive.  I have spoken in the past about how distressing this was for everybody involved.  Because most of the time this was directed at my Mum, she would feel bad, and I would feel guilty.  It wasn’t until after I was diagnosed with autism, aged nearly nine, that we were able to start doing anything that really had any impact on these outbursts.

 My Mum devised something she called the Reward Plan.  I`m sure you all think you know what Reward Plans are, but this one is different.  First of all, even though my Mum created it, she did it with my input, and kept me informed of what she was doing the whole way through, so that I fully understood, and was comfortable with the plan when we started using it.

The main principle of the plan was to focus on positivity, and never punish or criticise what could seem like bad behaviour.  The reason for this being that we don’t see behaviour such as outbursts/meltdowns as being bad – it wasn’t as if I was choosing to have a meltdown – so to punish me for something I had no control over would have been useless, and counterproductive.

The idea was to give points for any positives that could be gained from a situation.  For example, `I calmed down more quickly after having an outburst – 5 points`   My Mum designed a chart with a dragon on because I really loved dragons at the time, and collected them.  It might seem strange, but within two weeks of implementing this programme my behaviour in general had greatly improved, and I had far fewer outbursts and meltdowns.  The same continues to be true to this day.  I can`t say that it will completely take away any of the negative behaviours that come with autism – I don’t think there is anything that can do that – and as autistic people don’t choose to have meltdowns these may continue as they have with me.  But for us the Reward Plan cut down the frequency and severity of my meltdowns, and made them manageable.

Without this plan, and the positive effect it had on us, I don’t know where I would be today.  This is why a few years ago we wrote our first book about the Reward Plan.  It wasn’t done with any attempt to make money – even though we do get a small amount from each sale – the main aim of the book was, and always will be, to try to help families who are struggling with their child`s meltdowns, to benefit from the same techniques that helped me.  I can`t promise you that the techniques contained within this book will solve all your problems, but I do think it would be well worth you at least trying them if you are struggling to cope with your child`s meltdowns/outbursts.

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 Based on the incredibly fast-acting effect our Reward Plan had on my meltdowns, I would recommend it for anyone, and everyone to try.  Even though the books title is Create a Reward Plan for your Child with Asperger Syndrome, the techniques can be adapted for people of different ages – if the problem doesn’t stop when you reach adulthood, why should the solution?  It can also be used for people with Autism in general, and for conditions such as ADHD.

 In fact there is no reason it simply needs to be used just for outbursts and meltdowns; over the years it has helped me to become more independent and sociable, as well as encouraging me to try things I might normally never have tried.  My confidence and self-esteem has increased greatly since my Mum created our Reward Plan.  I am now more able to make decisions, try new things, and make and maintain friendships.

One important thing to add – our Reward Plan was never intended to make me less autistic – the whole point of the Reward lan was to help me to gain the skills I will need to get by in the neuro-typical world as best I can in order to keep me safe, but more importantly to help me to embrace my autism, and to get the best out of it – to deal with the negative aspect of having autism so I can focus on all the positive things about being autistic.

If you want to take a closer look at our Reward Plan book go to http://jkp.com/catalogue/book/9781843106227 where it can be viewed and purchased J

Autistic or a person with autism?

`A person cannot be defined by something they didn’t choose, such as the colour of their skin, or the fact that they have autism.  We can only be defined by our actions, the choices we make, and the way we choose to treat other sentient beings …. `

Jane – ASK-PERGERS? 2014

Blogs I`ve written in the past have already touched on the merits of the phrases `autistic` and `person with autism`, but after hearing several people talk about this recently, I feel that I need to talk about it again.  For me it seems absolutely bizarre that there even is a debate about these two phrases – if you can even call them that.  I didn’t realise until a couple of months ago that anyone found either of these terms offensive, but some people are apparently offended as they feel being called autistic defines their whole being as autistic, whereas being called a person with autism makes it clear that they are a person first, and someone with autism second.  If this is how you feel then I respect this, and I would be interested to hear why you feel like this, but below are some of the arguments I have thought of against it:

  • The natural use of language is to say that if somebody is diagnosed with something they are a variation of whatever that thing is, for example diabetic or asthmatic. I am not drawing parallels between these conditions, simply between the language used.  Each phrase seems to have its right place in properly structured, grammatically correct sentences.  You could either say this person has diabetes/autism, or this person is diabetic/autistic.
  • People say that it is labelling somebody to simply call them autistic – that they are more than just autistic – of course they are, but you don’t say that you can’t call somebody white because they are more than just a white person. Everybody is multiple things in life, and in reality if you have autism then you are autistic – so if you say you are a person with autism you are simply saying you are autistic in a longer, more roundabout way.  Of course if that is what you want to say, say it – there is nothing wrong with that.  But saying that the shorter version labels you as something you are not, and is somehow insulting, whereas the longer version is perfectly alright, seems very odd to me.
  • This brings me on to my next point – why is it so terrible to imply that somebody is autistic? It seems as if a lot of parents don’t want to use the phrase autistic because by saying that autism is just a part of their child, they can diminish how much autism affects their child`s life.  But autism affects every part of the autistic individual: how they feel, how they interact with others, how they see the world, and it always will for the rest of their life.  This doesn’t mean it`s the sole element of who they are, but it does mean that it’s something they shouldn’t feel ashamed about identifying with.
  • Most autistic people do not feel ashamed about using the word autistic – mostly it is professionals, or neuro-typical parents who argue it shouldn’t be used. With all due respect to them, they need to take a step back and let the people who actually matter in this issue speak – so autistic people can say what they want to be known as, but that should only be for personal preference.  As long as the majority of people aren’t offended by a phrase, and they are only using it to describe themselves, or people like them – such as I have autism, or I am autistic – then it should be ok.
  • This whole debate seems so trivial, but more than that, it divides a community that should be united. I have seen people with autism reduced to tears because they have been told off for calling themselves autistic.  I have seen people who agree on ninety nine percent of things, falling out simply because of how they refer to their children.  This is in a day, and age where whenever you go on-line you see new stories of autistic people being taken hundreds of miles away to substandard care units, the Government tearing away benefits from disabled people, and forcing them back in to work even if that`s an impossibility for them, and people being assaulted, abused, and even dying when in supposedly safe care facilities.  This really is a time when people in the autism community should be coming together to fight these battles.  It is not big, and it is not clever to tell someone with autism off for referring to themselves in a certain way.  And I think that if most people actually looked at the world around them they would see that there are more important things to be getting angry about.  You might as well stand there criticising a fire-fighter`s choice of hat as your house burns down.
  • The term autistic doesn’t actually imply anything other than you are talking about a person with autism. This notion that lot of parents like to throw around nowadays – that it is only a phrase used by people who define somebody solely based on their condition – is unfair.  and the fact that neuro-typical people have a go at autistic people for referring to themselves in a certain way is simply ridiculous.  I can understand if somebody with autism is offended by this for some reason, although I would ask them to think about it in a logical way.  I don’t use my condition to define myself, and yet I call myself autistic.  Autism isn’t who I am, but I am an autistic person.

I just want people to think sensibly about this whole subject.  The fact that people seem to have taken something so inconsequential, and pointless and turned it in to such a hot topic for the media, and such a controversial issue, is bizarre.  So much time is being wasted, and so many arguments fought over something that means absolutely nothing.   Yes your child is a person with autism, which by definition means they are autistic.  The kind of person who would define somebody based solely on a condition, will do so whatever terminology you use.  Trying to lessen the autism will do nothing other than stigmatise it even more.  Autism is not something to be ashamed of – some people do use the condition to define themselves, and that’s their choice.  Of course there is nothing wrong with saying I am a person with autism, just don’t have a go at somebody who says I am autistic.  And please, could we just concentrate on things that actually matter from now on?

My name is Paddy-Joe Moran. I am a 19 year old autistic author of two books, and co-founder of autism advice service ASK-PERGERS?If you need any more help or advice about Asperger`s, or simply want to talk about it check out my free help and advice service ASK-PERGERS? On Twitter https://twitter.com/ASKPERGERS Facebook https://www.facebook.com/ASKPERGERS?ref=hl

Also to read more from me go to my blog https://askpergers.wordpress.com/

And have a look at my books (at the time published under pseudonyms, but I did co-write them trust me on that!) http://www.jkp.com/catalogue/book/9781843106227

http://www.jkp.com/catalogue/book/9781849052757