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Loneliness among young autistic people, and why this can go un-noticed

Christmas can be an exciting and fun time of year, and yet it can also be a time when depression and suicide rates increase, and people who normally feel lonely or down in their lives can feel even worse.  Being bombarded by constant images of happy people enjoying themselves can`t be easy for somebody who is lonely, and it is loneliness that this blog is about, and how it can sometimes go undetected in younger people.

Why is the problem of loneliness prevalent in autistic people?

Loneliness can affect anybody, but because autistic people can struggle to socialise and communicate anyway, they are more susceptible to it.  It may be that even if the autistic person goes to school or college they find it hard to interact with those around them, and are not included in social groups.  Some autistic people may also find dating and relationships challenging, and so may not be able to get companionship that way.  Having said this a lot of autistic are not lonely, and a lot of lonely people are not autistic.

Why does this sometimes go un-noticed?

The reason for this is probably best illustrated by looking at a scenario such as the one below – take a twenty one year old autistic woman who could go to university, and communicate with people as and when she needs to.  She could have a job, and communicate with people professionally, but may be that is as much as she can do.  Maybe she doesn’t know how to have a laugh, and a joke.  Maybe when she tries to find somebody to talk to about her special interest all she gets is blank looks.  Let’s even suppose that she is invited to nights out or parties – maybe the sheer force of will and energy that it takes her to get up and go in to university or work, and interact with people daily, means that she doesn’t have anything left to go out and socialise.  People may begin to think she is unfriendly, and in the end stop inviting her to things.   It should be stressed that this is not representative of all young, autistic people, but if you can hold it in your mind, it is an example of how somebody can be around people all day, and hold conversations with them, but at the same time still be profoundly lonely.  It might be a cliché, or even the lyric to some cheesy, eighties song, but like many clichés it has a ring of truth to it – sometimes the loneliest place to be is in the middle of a crowd.

What has this got to do with Christmas?

It is a problem that can affect people all year round, and sometimes for their entire lives; a state of isolation in the middle of hordes of people. But at Christmas, when every image you see is of happy groups of people enjoying themselves and socialising, it is little wonder that the feelings can intensify.  Neuro-typical people will probably be going out and socialising a lot more over this time, and many adverts on TV even run with slogans such as `you don’t want to be alone at Christmas`.  Therefore the message that is generally sent out, and drummed in to people is that Christmas is a time to spend with others, and that if you don’t have someone to spend Christmas with there is something wrong with you.  The human mind tends to focus everything inwards, so if there is a problem it is only a matter of time before the person with autism blames them self, and begins to feel there is something wrong with them.  To not be able to find anybody to spend Christmas day with could easily generate feelings of self-hatred – it can be embarrassing, and difficult enough for a person with autism not to be able to find somebody to sit with in a canteen at work or college. As with many other things, there is such a social pressure put on to Christmas that it can make what is already a difficult and complex mix of emotions much worse – sometimes even to the point where it becomes fatal.

(This blog is about raising awareness of the subject of loneliness, and not giving tips on how to deal with it.  However I will post another blog soon that will give tips which may be helpful)

What can people do to help?

The most important thing is to not think that only elderly people can get lonely at Christmas; there may be teenagers who don’t want to spend time with their families, and feel lonely because they have no one to speak to.  People in their twenties, thirties, or any age can feel lonely.  Loneliness, especially over the Christmas period, can be the start of a dark road that can lead to depression, and even suicide.  What society as a whole can do to help is first of all just understand, and realise that it is a genuine issue.  The actual solutions of how to help people to stop feeling lonely are more complex, and difficult to implement.  But if society grasps the concept that people of all ages, genders and races, can have the same sets of feelings, then it would be a big step in the right direction.

The stereo-type of autistic people always wanting to be alone is something that should be out-dated.  A lot of autistic people need to take breaks, where they need to spend time on their own to clear their minds, and there are some people with autism who could happily spend Christmas and even the entire year alone, but this is not all autistic people.  It is hard to face up to other people`s loneliness, and harder still when it is at a time when all you want to do is sit in front of the TV and eat chocolate.  But this blog isn’t even asking people to do anything really, it is simply letting you know – in what I hope is a clear and concise manner- that loneliness is a problem faced by some autistic people, and especially around Christmas time.  If you are involved in the autism community, and can think of anything you can do to help, then you should definitely do it – even if it is something as simple as just talking to somebody.

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Why Autistic People are more likely to be bullied …

 

Anyone can become a victim of bullying, but it does seem that a disproportionate number of autistic people experience bullying at some point in their life.  There are a number of reasons for this, and most of them are to do with the psychology of the person doing the bullying.  There is something about autistic people that makes them appear to be `good victims` in the eyes of a potential bully.  Probably the simplest way to illustrate this point is to list a few of the key issues below so that you can get some idea of what I am talking about.

  • Autistic people tend to stand out from the crowd – one of the fundamental principles of autism is that if you have it you are not like everybody else around you.  This doesn’t have to be a bad thing, and you don’t even have to be completely different from everybody, but the fact is most bullies will pick on somebody who is even slightly different.  This could be somebody who is fatter or thinner, or taller or shorter than average.  If somebody has autism they might communicate differently from those around them, or behave differently.  It might be something as simple as dressing in a particular way, for example, somebody I knew would wear a suit every day.  Or it might be talking in a formal manner in informal situations.  The fact that somebody is looking for a victim means that even the slightest difference will make a person with autism eligible for bullying.
  • Autistic people may not have as big a circle of friends to stand up for them as other people do – what I feel I have to make clear with this point is that I am not talking about everybody here – I am just using what I have been told by a lot of autistic people who have been bullied to make these points – it won’t be true for everybody.  But what some autistic people report is that as they struggle to make friends in school or the workplace, they are singled out within days of arriving somewhere as being that one person who hasn’t made friends yet; therefore if the bully is looking for a victim they won’t be looking for a group, but a mere individual.  This is the beginning of a vicious cycle.  Because they couldn’t make friends quickly enough they became known as that friendless person who gets bullied – and who wants to be friends with that person? Apparently no one, meaning that they are even more likely to experience further bullying.  Of course people should be able to go in to a certain situation and make friend s in their own time and their own way, but unfortunately it seems that a lot of schools and workplaces have social structures almost like prisons; if you are in a group you are much more likely to have people watching out for you, whereas if you are on your own you are much more likely to fall victim to bullying.  It should also be pointed out that people who do have good friends can also be bullied, but the majority of bullies will look for the easiest possible target.
  • A lot of people with autism are not able to read body language or other social cues, so it can be hard for them to read other people`s intentions – this obviously makes them much more vulnerable if somebody is planning to do something to them – perhaps luring them away to somewhere more secluded so they can be beaten up, or manipulating them in to doing something embarrassing, or illegal.  The person doing this might not even be that intelligent or good at disguising what their intentions are, and it may be evident to everybody else in the room – but if it goes completely over the person with autism`s head, then they instantly become a much more inviting target for anybody intending to bully.  People with autism may underestimate the severity of what another person is planning.  It is also possible that they may be manipulated in to thinking that the bully is their friend.  The cues that something is not right when they are being lured in to a certain situation: certain looks, laughs or remarks, may be completely missed.  This allows bullies to be able to manipulate autistic people in a way they couldn’t do with neuro-typical people.
  • Autistic people also tend to take things literally – this connects to the point above in that it makes them easier to manipulate – But what it also does is lend extra power to the words of the bullies – this comes in two ways: if somebody says `I`m going to kill you` most people assume it means they are going to get beaten up.  Now this isn’t pleasant in itself, but if the person with autism genuinely believe what people say to them, and they have to go in to school the next day thinking someone intends to kill them, then the toll that would take on somebody’s physical and mental health must be extreme.  To have the pressure of believing every single threat that is given by a group of bullies would put incredible stress on to an individual.  The person’s family, and their life may be threatened daily.  This might have the added complication of stopping the individual telling somebody about the bullying.  It would also make the experience even scarier for the autistic individual. The other way that taking things literally can make things more difficult is when it comes to on-line bullying; threats and verbal abuse are an unfortunately common part of people’s on-line experience.  But most people know that in reality the people at the other end of it do it for their own pleasure, and probably don’t feel one way or the other about the people they are sending these messages to; if the bully hadn’t come across that particular autistic individual then the messages would be sent to someone else.  I am not trying to say that this makes it easier for the victim, so imagine believing that every random insult thrown up by someone on-line was sent with genuine hate to you personally, then is it any wonder that some people begin to believe these insults and threats, and feel worthless or scared?
  • Sometimes, because autistic people struggle to understand how to fit in socially, they may do anything they feel is necessary to attempt to fit-in with their peers –Unfortunately this makes them incredibly vulnerable to those who simply want to tease them.  In their mind they might be part of a group and they are all having fun together, but in reality they are just the butt of the jokes.  This obviously isn’t the case in all friendships autistic people make, it is just something that can sometimes happen with a bully, or a group of bullies.  Because that desire to fit in can be so strong the autistic person may know that what they are being asked to do is wrong or embarrassing, but they may do it any way rather than go back to being ignored.  Now unfortunately this can happen with any type of social out-cast, whether they are autistic or not.  It is also possible that the autistic person may not know that they are doing something wrong or illegal, and also that they are not trying to fit-in because they want to make friends, but trying to fit-in just to stop the bullying.
  • Autistic people often give a better, more rewarding, reaction when bullied – now bullies like to hurt and manipulate people – this isn’t to say that they will be bad people all their lives, but in that moment they are causing physical and psychological pain to another human being – some do this because they enjoy the power it gives them over someone else, but most do it to see what reaction they can get from another person.  Somebody who is autistic may obviously be provoked to the point of a meltdown –which is just about the biggest reaction a bully can get.  They may wind the person up in subtle ways that will lead to the autistic person having an outburst, and being perceived as the bad-guy themselves.  The reason a lot of bullies, or former bullies give as to why they hurt people to provoke a reaction is that they were bored.  This doesn’t have any weight to it though, as there is really no reason to be bored in today`s society – the internet and mobile phones give us everything we could ever want at our fingertips, and yet some people choose to use this to bully.  People who engage in provoking these kind of reactions do so for their own enjoyment, and unfortunately autistic people often provide the best reactions.
  • Autistic people can struggle to ask for help with a problem because of their communication skills – maybe they physically can’t ask or tell because of an inability to speak? Maybe they are too scared and anxious to make an attempt at telling a teacher, co-worker or parent about what has been going on for them?  Maybe they believe the threats of the bullies, and don’t speak-up for this reason?  Whatever the reason is, autistic people can find themselves suffering in silence at any stage of their life.  People say tell a teacher or a parent, as if that solves everything – that`s fine but if you don’t know how to tell somebody, if you don’t have the confidence to approach somebody, if the idea of going up to someone and starting a conversation like this is almost as scary as being bullied, then what are you to do?  I am not offering solutions here, but perhaps it is better if the parents and teachers try to notice the problem themselves, and look out for it?  It is really important that somebody else knows what is going on and supports the person who is being bullied.

The above are just a few points that occurred to me when I began to think about why autistic people are more likely to be the victims of bullies.  I suppose what I did was put myself in to the shoes of a bully, and ask myself if I wanted to hurt somebody and get away with it, what type of person would I target, and why?  There may be other reasons, and not everybody who is autistic will be a target for bullying during their life.  I hope that the points I made above make some kind of sense to you.  I am sure I didn’t cover them all, and if any others do occur to you please comment below, and let me know what they are.  I also don’t mean to suggest in this article that only autistic people will be bullied, as bullying is a problem that can affect anyone in society.

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The Long-Term Impact of Bullying

People often view bullying as an unavoidable part of school life, or of childhood in general.  They might think it is a pity that some children get bullied, but they also think it is just a reality – just a harmless bit of playground fun.  But in actuality bullying can invade every aspect of a person`s life.  Nowadays, with the on-set and increasing incidences of cyber bullying, people of all ages can be bullied by complete strangers in their own homes.  There is also bullying in the workplace; either by the manager, or a group of colleagues.  So somebody can potentially be a victim of bullying their entire life, unless something is done to help them.  When you actually step back and take a look, bullying is prevalent everywhere from primary school to retirement homes.  The concept that bullying is something that happens to someone when they are at school, and then it`s all over is simply not true.  But perhaps a more dangerous thought is that any form of bullying doesn’t have a long-term impact on the victim.

The idea of the playground bully has become so ingrained in our society that it is almost as if we just view them as a normal part of life; just somebody who is there and does a job in society like everybody else.  But the long-term damage they can cause is probably worse than the majority of people would ever give them credit for.  It would be silly to say that all bullies are evil, or are even bad people.  Of course their own circumstances could be contributing to them becoming bullies, but this is no excuse.  And it really depends on the severity of the bullying; lot of people have difficult home lives, but they don`t all chase people through lanes of traffic just to kick them in the head.  If you take adult bullying out of the equations and just look at a scenario of somebody who was bullied through primary and high school, it is not uncommon for those years of school to feel almost like a prison sentence for that individual.  It must be torture for someone who is being bullied every day to have to continue to go to school.  At every other point in our life our perception of time is that it goes incredibly fast, and yet in our childhood and early teens we perceive time as trickling by slowly, and so if somebody is being bullied the idea of school stretching on for several more years can feel so daunting that many children often contemplate suicide as a way out – the fact that otherwise healthy children can contemplate killing themselves should put in to some perspective just how psychologically damaging bullying can actually be.  Often the victim will begin to feel worthless, and almost as if they deserve to be bullied.  People can become physically ill and develop mental health issues such as panic attacks or depression, and of course there are often physical injuries as well.  Even when the child has left school those feelings of worthlessness and depression will often remain.

Being bullied is often extremely traumatic.  Because everybody knows somebody who has been bullied, to describe it as a trauma might be looked upon as being a little over the top – but if somebody is surrounded by a group of people who beat them up, and verbally abuse them over a period of years then what is this other than traumatic?   Another aspect of why the after effects of bullying in childhood can last so long is that there is hardly ever any real come-uppance for the bully themselves; most children who bully might get some kind of superficial punishment, but it is nothing at all in comparison to what they have done.  This may seem fair as a lot of people will later grow up to regret what they did in childhood, and even hate themselves for what they did to others.  But this is of no help to the people they have hurt.  It is hard to get over something when there is no closure; if a bully has made every day of an individual’s life hell for years, and then they simply walk a way to happily get on with their own life, then it is incredibly difficult for the target of that bully to feel like things are actually over.  And so there is often a long-term, emotional impact for people who have been bullied.

I am not offering advice on how to deal with the long-lasting effects of bullying for multiple reasons: the first being that I may well cover this in another blog later on in the week.  Another reason is that I suppose it would completely depend on the individual, and the type and severity of the bulling they have experienced – so there is no simple solution to this problem.  I am sure if you have experienced bullying yourself you don’t need me to tell you – or remind you – about the long-term effects, but hopefully this blog has been of use to some of you.  I should also point out that I am not writing specifically about people with autism here – bullying is an issue that can affect anybody in society, and its severity should never be underestimated.

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Autism and the Build-Up of Emotions

It is often said that autistic people don’t show emotions.  For some this may be true, but the emotions are still there, just as strong and potent on the inside as they are with anybody else.  Just because the person themselves can’t recognise the emotions, doesn’t mean that they don’t take just as much of a toll on them as they would if they were aware.  Strong emotions can leave people feeling physically worn out or ill.  Even the smaller, day to day emotions can have an effect on people’s physical and mental well-being.  Displaying these emotions outwardly is obviously first and foremost a way of communicating with our fellow human beings, but it is also a way of relieving some of the pressure from the build-up of emotion we all have inside.  Even if an emotion is positive it is still not always healthy to keep it bottled- up inside, and if the emotions are negative then this can actually be extremely unhealthy.  Autistic people though often don’t have a choice; their emotions are often forcibly kept inside and internalised because they are unable to fully understand, and express them.  Perhaps a good way of showing how this might work is to imagine pumping up a balloon.  It can fill with so much air, and if you keep releasing the air, and then putting more in it will constantly be at various stages of inflation.  But if you keep adding more and more air without allowing any to escape to the outside, then even the faintest puff of breath can cause the balloon to burst.  A lot of the time autistic people will go in to meltdown: scream, cry, fight, or bang their heads against walls, over something that to all intents and purposes is minor.  But just like the balloon, they have filled to bursting point only this time it is with unexpressed emotions.  These emotions could even be weeks or months old: anger, frustrations, stress, even happiness, all flitting around the brain tripping over each other, and unable to emerge in to the outside world in any coherent way, and so even one minor thing can trigger them all to explode outwards, resulting in an outburst.  This is why the term `outburst` is so fitting; it is as if all that pent up emotion simply bursts out.  It is too much for anybody to control let alone someone who doesn’t have a full grasp and understanding of their emotions.  The autistic person can try to reign it in, but ultimately they don’t have any particular control over where it goes or over how it expresses itself.  I don’t particularly know the secret to not carrying round pent-up emotions. I suppose the key is in trying to understand what each emotion is, and to learn to recognise when you are feeling it.  This might sound very simple to someone who is neuro-typical, but I will take you back to an analogy I have used in the past.  Imagine waking up with amnesia and forgetting everything you`ve ever known – every word and what it means.  Eventually, as part of your recovery you are shown a square of colour with three words written next to it.  The words are orange, white and blue.  You are asked to point to which one you think the colour is, but obviously you don`t know.  You do know that to everybody else around you it’s not even something they have to think about – they just see the colour and know what it is.  But for you, you could sit there all day and try to puzzle it out, but in the end you are just going to have to take a wild guess, and hope you are right.  Now I admit that this analogy isn’t perfect because somebody could simply tell you the colour, and then you`d know.  But if you can imagine the confusion and sense of not knowing in that moment it might help you to try to understand how difficult recognising emotions can be for somebody with autism.  If you don’t recognise it, how can you know how, and when to express it?  And in the end it will simply emerge with the rest of the built-up emotions in the form of an outburst.

I don’t wish what I have written here to be too negative; it might sound as if I am trying to say that autistic people can never show any emotion, which would be nonsense.  But I am sure if you are reading this you know enough about autism to understand what I am getting at.  I think that this is a problem faced by a lot of people with autism to varying degrees; sometimes it might not even feel as if it is a problem, until you step back and look at what tends to happen in the days, and weeks preceding a major meltdown, and realise that the build-up of unexpressed emotions could have been the cause.

Hopefully this blog on the build-up of emotions will have been of help to some of you.  If you know and recognise what I am talking about then please comment below, and let me know what your experiences and thoughts on the subject are J

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Bonfire Night

A guest post from Jane 🙂

Bonfire Night

Many children/adults with autism may look forward to Bonfire night and want to join in, but still struggle with the sights, sounds, and smells.  Others may dislike the whole event, and just wish it would go away.  Either way, it can help to prepare and support the autistic individual through this time to minimise any stress that may be experienced, and reduce the risk of meltdowns, which can be distressing and exhausting for all concerned.

  • Prepare your child based on their level of understanding – talk to them, watch programmes about Guy Fawkes and the gun-powder plot, write/draw about bonfire night, make collages – anything that you feel will help to get the information across to your child about what bonfire night is, and what might happen.
  • Make a calendar and do a countdown to Bonfire night – this can be a very visual thing, where the child ticks off the days – I used to draw and cut out fireworks that my son had coloured in, and we would stick them in a row on the wall, removing one each day until November 5th.
  • Prepare your child for the noise by playing a DVD or CD with the sound of fireworks on – you can do this very quietly at first and then gradually increase the volume. If your child is doing something they enjoy with this noise in the background, it can help to desensitise them to the noise of fireworks – maybe not completely, but it can certainly help them to be not quite so distressed by the noise of the real fireworks.
  • If your child wants to join in the activities but is experiencing anxiety, the above tips should help.  Also, if they are going to a bonfire, maybe let them wear ear muffs to drown out some of the noise, a peak cap to block out some of the visuals, and stand further back from the display to cut down a little bit on the other sensations.
  • It can help to have a set time of arriving and leaving so the individual with autism can enjoy the event, but not be exposed to that level of sensory intensity for too long.
  • When returning from a firework display the person with autism may need peace and quiet, and time to themselves – don’t mither them with chores or homework, just leave them alone.
  • If the person with autism prefers to stay home you can keep them occupied with a calming activity, may be centred around their special interest if they have one.
  • They can still wear headphones/ear defenders in the house, or turn the music/T.V. up to block out some of the noise.
  • If the individual is experiencing sensory overload then turning up the volumes may not be a good idea, and trying to keep everything calm and low key can help.
  • If the autistic person can tolerate the smell, then use aromatherapy oils such as Lavender, which can be calming, and also help to mask the smell of smoke and burning that pervades our homes during this time.
  • In the days leading up to Bonfire Night, and the days following avoid going out with the person after dark as people tend to light fireworks for days before, and days after November 5th.
  • The sensory overload experienced by many during this time of year can lead to meltdowns.  If you as an individual with autism, or a loved one with autism has a meltdown during this time it will be understandable.  However, it is possible that the meltdown may not occur until sometime after, when all of the fireworks have stopped, and things seemed to have returned to normal.  This is due to a build-up of emotions during this time, and the trigger for the explosion may be something seemingly small and unrelated – so be aware of this and be patient.
  • Sensory overload can cause some people with autism to `self-harm` as a direct response to their stress levels.  Following some of the above advice should help to minimise this risk.  If self-harming does occur then you need to deal with it in a calm manner so that you don’t add to the sensory overload.  If you are the person with autism who is self-harming then please seek help from someone you trust, or the National Autistic Society on how to deal with this. I would suggest doing something that you normally find calming, which can be a distraction from the cause of your distress.
  • http://www.autism.org.uk/living-with-autism/understanding-behaviour/challenging-behaviour/self-injurious-behaviour.aspx
  • Animals can experience the same level of fear and distress during bonfire night, and it can help the person with autism to spend time with their pet (if they have one) or someone else’s, as animals can be a very calming influence for some people with autism, and in this situation they could help each other.
  • The above are just a few tips which may help you as an individual with autism, or a loved one with autism to cut down on sensory overload, and the risk of having meltdowns.  I hope you find them useful, and please do share your tips with us in the comments box below – the more tips we can share, the better we can support people with autism at this time of year   Jane xxx

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HALLOWEEN

HALLOWEEN

Halloween is one day, but the impact on people with autism can start days before the event, with all the activity and preparation for Trick or Treating, or Halloween parties. Or even weeks before, with the aisles in shops filled with bright orange pumpkins, scary masks, and bright-red fake-blood. This can have a sensory impact on somebody with autism. The impact of Halloween can last for days, or even weeks.  If you decorate your house with black and orange streamers, Jack-o-lanterns, candles, fake spiders, rats, and bats, then it may be a nice change, a fun change for your child with autism, but it is still a change.  And those of us in the autism community know that even good change can be overwhelming for somebody who has autism.

There can also be a lot of excitement around this time of year; siblings or friends of the child with autism may be looking forward to playing Trick or Treat, or going to a Halloween party, or even just to dressing up, and having some fun at home.  People with autism can be very sensitive to changes in the moods of others – they may not always be able to recognise or articulate others feelings, or their own – but they can still be affected by the heightened mood of others.

Bright colours, changes in food such as extra sweets, and different smells in the air, can all contribute to a sensory overload which can leave the autistic person feeling overwhelmed and stressed.  Costumes with itchy materials, or labels, face-masks, wigs, face-paints – all of these things can feel irritating and uncomfortable for someone with autism, even if they want to dress-up and take part.  On the whole, although Halloween can be a fun and exciting time of year for all children, for children with autism it can also be a confusing, distressing, and overwhelming occasion.

Below are some tips that may help you and your child with autism to get the best out of Halloween, and hopefully to enjoy it J

  • First and foremost – your child does not have to take part in Halloween activities if they don’t want to.  You can plan something quiet to do with them that isn’t related to Halloween.
  • Preparation is usually the key to success in most areas when it comes to autism; start preparing your child for Halloween a couple of weeks before the event actually takes place to give them time to get used to the idea of a change.  One way you can do this is to have a calendar, and count down the days to Halloween with your child.
  • Depending on your child`s age, it can be really helpful for them to learn lots of facts about Halloween such as where it originated from, and why it is still `celebrated` today.  They may enjoy doing the research with you.
  • For all children with autism, despite where they sit on the spectrum, writing and drawing about a subject can help them to absorb it better.  They can write poems about Halloween, draw pictures, make collages – anything that is fun and helps to get the information across regarding what Halloween is, and that it is going to be happening soon.
  • Even if you don`t `do` Halloween in your family, the likelihood is that your child will still be affected because of the merchandise in shops, the buzz of their friends who do take part in Halloween, and especially because of Trick or Treat, and how chaotic and noisy the streets can be on that night.  Your child will still benefit from some preparation.
  • If your child is going to wear a costume try to have this sorted out well in advance of Halloween.  Let them get used to wearing it; to the feel of the material for example, and then if there is a problem you will have time to fix it, or find a different costume.  Irritating material, and itchy labels can be particular problems.
  • Don’t try to cajole your child in to wearing a mask or fake fangs if they are reluctant – these could prove to be extremely uncomfortable for someone with autism.  The same goes for wigs, and face-paints.  One useful tip is to try to make a costume from clothes that the child is used to wearing; for example take old leggings and T-shirt and tear them to make a zombie costume, rather than buying a ready-made one, and risking the material itching the skin. An alternative to wearing a mask can be to make one on a stick that they can hold in front of their face as and when they want to.
  • If your child want to do Trick or Treat then prepare them for this by talking, writing, drawing in advance what they can expect.  They may want to wait at the gate with you while siblings/friends go to the door, or they may want to go to every-other door, to have a little break in-between. It can be useful to put a time limit on how long the child will be Trick or Treating for, and maybe have something calm, and quiet planned for the return home.
  • If your child is on a wheat and gluten free diet then you may need to make up some treats especially for them, or enough for the whole family so they are not eating differently from everybody else.  When it comes to Trick or Treat, maybe you could speak to close neighbours, family or friends in advance, and give them some wheat and gluten free treats to give to your child when they knock.
  • If your child is staying home, and needs to be shielded from the noise of Trick or Treat you could use ear phones, and put a favourite story CD on for them, or get them engaged in an activity they normally enjoy before all the noise starts, so they are already engrossed in something, and hopefully won`t be as affected by the noise.
  • To prevent too many people knocking on your door, place a bowl of sweets just outside your door, or near the gate, with a note saying `…Unable to answer the door tonight, but please feel free to take a handful of sweets…`
  • As the noise and excitement wears off your child may need some space to themselves, and some quiet time, so don’t make any demands on them, such as sitting with the family, or doing homework.
  • Try as far as possible to stick to your child`s normal routine.
  • Remember that they may experience a sugar-rush from too many sweets and this could affect their behaviour, making them more hyper-active initially, then possibly tired and irritable as they `come-down` from this.
  • Don’t pressure the child to try new foods on Halloween, such as scary shop-bought cakes.  Make sure their usual food is available for them.

Stress, anxiety, and sensory overload can last for days, or even weeks after such a big change in routine as Halloween.  Don’t be surprised if your child does have a meltdown in the days, or weeks following Halloween.  And remember; when they get upset, or explode because of something seemingly small, that this may actually just be the trigger that has released a build-up of emotions during the Halloween period.

If you do put in to practise some of the above tips you may not reduce sensory issues, or the risk of anxiety or meltdowns completely, but they should help to lessen these difficulties, hopefully making things easier for your child with autism, and for the family as a whole.

*

When my son was younger I was able to find lots of advice and information regarding the bigger changes and transitions, such as going from primary to senior school, or from senior school to college.  I was completely unable to find any advice on the smaller, daily, weekly, monthly or yearly changes, and so I set about creating my own.  The Transition Techniques I developed were specifically designed for times such as Halloween, Christmas, weekend to weekdays, changing of the seasons, and a whole host of other smaller changes – that don’t seem so small to people with autism!

To learn more about our Transition Techniques for these smaller, everyday changes take a look at our Transition Techniques book: http://jkp.com/catalogue/book/9781849052757

978-1-84905-275-7

The KINDLE edition can be found here: http://www.amazon.co.uk/Children-Spectrum-Conditions-Everyday-Transitions-ebook/dp/B00C4XR1PI/ref=sr_1_1?ie=UTF8&qid=1412715667&sr=8-1&keywords=helping+children+with+autism+spectrum+conditions+through+everyday+transitions+kindle

For information and advice on AUTISM/ASPERGER`S take a look at our on-line advice service ASK-PERGERS? on Twitter: https://twitter.com/ASKPERGERS  Facebook: https://www.facebook.com/ASKPERGERS

HAPPY HALLOWEEN FROM ASK-PERGERS?

University:

The last few months have been very difficult, but now everything is finally sorted out for university.  After months of phone calls, meetings, assessments and providing evidence I finally have a grant, along with all the support that I will need in my course.  Although I haven’t started the proper course yet, and have only been doing introductory parts of it, it is still evident that the things we fought for will come in very useful throughout the three years that I will be at the university.  I don’t have a huge amount to say in this blog, the main point that I wanted to make is that there is no real way to make this simple – it can be very difficult getting the help and support needed for university.  But I also firmly believe that it is well worth it.  Some universities are very good and services will go through without any hitches, so don’t automatically think that you will have a very hard time getting what you need before you can attend university.  I have already talked in my blogs about how difficult it has been, so there is no need to go in to too much detail here.  The main thing to remember though, if the process is difficult, is that it is worth sticking to it.  For us it seemed that at every turn something new was coming up, that threw-up a whole wave of other problems.  But at no point did I ever feel that I wouldn’t get to university, or that it would be worth quitting, and not going.  In fact I felt the opposite; that because it was so difficult to get there it would be worth perusing even more.  Nothing should be off limits to people who have disabilities, and unfortunately I do know of people who have quit half way through the process, and dropped out of university because of how difficult it was to obtain the support they needed.  I would never have a go at them, or say they had done the wrong thing because everybody obviously have the right to choose what they do in their own life. But it is a pity that they felt they were denied the opportunity to a further education because their disabilities were not catered for.

Obviously I have no idea how I will find the next three years at university – it might be good or it might be bad, to put it simply. But the simple fact that I was able to go, and to get all the help and support that I need, which for a long time it looked as if I would not, feels like an achievement in itself.  I know this blog is very short, but now I am adjusting to university I hope to get back in to the routine of putting one up every week or two.  If there are any particular issue you would like me to talk about please let me know below in the comments or on Twitter or Facebook.

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

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

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