Tag Archives: issues

Autism and issues with my routine ….

Last week I wrote a blog about my new routine and how it has been helping me get more done, and feel better about myself, and while that’s true it would be misleading to leave it at that, and not talk a bit about some of the things that can, and have gone wrong with it. These are things that have gone wrong this time, but could also go wrong with any routine; so they are not issues with the routine itself, instead they are things that happen that impact on if, and how I can stick to my routine.

Sometimes it`s hard to establish a routine: What I mean by this is that for me if you do something a few days a week it`s not really a weekly routine. So when I plan out what I will be doing on each day of the week (planning to do the same thing each day) and then have to say “ Well not on Wednesday because I have to go out, and not on Friday because I have to go out then too.” It feels like I am not taking the time to get myself set in a new routine. Of course life throws up things you need to do, and I would not be able to stick to the same plan every day of my life, but if I can`t even stick to it for the first week how am I meant to feel like it`s a daily routine? If I only do it a few days each week it`s hardly a routine. The best thing would have been to clear a week, and do my routine each day so that I was in the swing of it then start to change it as, and when it was needed to fit in the other things life throws up. This way I would have been set in my routine, and more able to get back to it if it had to be changed one day.

Missing one part of it can mess up the whole day: If I say I am going to be up at six, work out and start my work by eight, and in fact I do not get up till seven then that can throw my whole day off. Why? You might be asking. I am at home all day after all, so what if I do the same things just an hour or two later than I was planning? And it`s a good point – that would be the smart thing to do. But sometimes it is not as easy as all that. Often I will try to get back on track after something has not gone to plan, and just find myself unable to do so. Try as I might the days where things go wrong early on hardly ever end up going well. If I am going to make a routine work I need to stick to it fully. Something as small as getting up a bit late can throw me off track for the whole day. Perhaps planning to get up as early as I do is the issue? I like to be up early and enjoy working in the mornings, but if I do have the whole day to work with perhaps I am less likely to fail to get up if I plan to get up a bit later? Or perhaps I just need to make sure I get to bed at a better time so I am less tired in the mornings? Either way that issue can be dealt with, but the point is that anything that goes wrong can mess up the whole routine for any given day.

Not having a plan B: Sometimes things will happen that you just can`t control, for example I get hay fever and sometimes it`s pretty bad. Some days it`s normal; just a blocked nose and a bit of sneezing – nothing too bad. Nothing I cant work through. But every now and then I wake up and it`s bad; I am sneezing every few seconds, my head hurts, and I am sweating and burning up. I feel dizzy, and at times like this there is just no point trying to work. It does not happen often, and only ever lasts a day at a time, but when it does it messes up my plans. I spoke about how I need to plan my rest time too in my last blog, or I end up doing nothing, and this ties-in with that. If I find myself waking up unable to do my routine I am often unsure of what to do. Do I try and do it? Do I admit that I can`t and do something else? What else is there to do? If I had a plan B, a back-up plan to be used on days when I can`t stick to my routine this would not be an issue. The plan could be something as simple as “Watch a few episodes of a certain TV show”. That might not sound like much, but when I am overloaded or feeling the impact of a sudden change of routine it`s very hard for me to find something to do. This is in part due to the fact that I don’t want to do anything, and just can`t get exited about doing things when I feel that way. Therefore, if I were to think about watching a T.V. show on the day I would not want to do it, but if it was pre-planned “If I am unable to do my routine I will watch this show” the chances of me forcing myself to do it (and enjoying it) are much higher. This cuts down on the risk of me just sitting around feeling overloaded after a change to my routine.

Having too much free time: Free time is good, and for me it is needed; I don’t like working to a routine where every minute of the day is planned beforehand (some people do, and it`s just a case of what works for you). But I found that I was working until 12 and then the next thing I had planned was to read at nine at night. This meant I had a lot of time to fill. It`s not to say I did not spend any of that time well: I got films watched, I read and I did work around the house, but I do think perhaps giving myself so much free time in the end was not helpful. I could have half that time, and still have a lot of time to relax and do whatever I want to do. Again how much time is planned, and how much is set in the routine will depend on the person, so to a point I am just trying things out to find out what works for me.

So overall I would say my new routine is a good one; it has helped me somewhat, and has definitely made me feel better on the days when it has worked, but it`s far from perfect yet. But that’s OK, as I said it`s about trying things out, seeing what works, what helps and what makes things worse, and coming up with a plan that helps me to get more done and feel better. That takes time and there might be a whole load more things to learn before we get there, but as long as we get there in the end that’s the main thing. And even in the mean-time having some kind of routine, some basic plan for at least parts of my day is helping me do more than I would if I had nothing at all. Things might not have worked out right away, but they hardly ever do and a good routine is something that’s worth taking the time to get right.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

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

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

How the media is shaping public perceptions of autism for the worse.

I was planning to write a few more specific response blogs to some of the stories that have been doing the rounds on Twitter over the past few days, but I just don’t have the inclination to sit down and give each story so much time. If you`re not sure what I am talking about let me explain.

First of all we had the autism/radicalisation story in the Daily Mail; a story which implied that autistic people are more likely to become terrorists, and I did take the time to write a full response to this one. Then over the weekend I came across another story, this time linking autism to screen time. In this article a professor of neurology talks about two studies which he claims show a link between screen time and autism. The idea being that some children can develop a type of autism from spending lot of time on Ipads or laptops, and if parents take those away and play with the children more then the autism will go away. A ridiculous story that harks back to the days of the refrigerator Mother, and once again a story written by a professional, based on work by other professionals, that has angered and offended the autistic community.

Then there was a story by writer Kathy Lette, again in the Daily Mail, in which she talks about feeling the need to hire a sex worker for her autistic son as he felt he would never be able to get a girlfriend on his own. As a lot of people on Twitter have already said, it`s not the idea of using a sex worker that’s the problem. It`s the fact there is nothing in the article to suggest that Lette talked to her son about the idea, not even when she came close to picking a women up on the street. It reads as if her plan was just to pick the woman up, turn up and present the woman to her son. Not even going in to the fact that he might not have wanted sex then, or with that particular women, there is the issue of planning. Doing anything that is not planned for, or part of the routine can be hard for autistic people. But something like this should never be sprung on anyone, least of all some one with autism. There is also no input from her son in the piece, and not even a line to say that he is happy for her to write about him in this way. I fully understand that there is a limit on words in an article, and perhaps she did talk to her son both about her idea and about writing the article, but what’s angered a lot of autistic people on twitter is that neither of those things are in anyway clear. It reads as if the plan was hatched and nearly put in to action without him knowing at all. And while this point might have nothing to do with autism, there is also the fact that the writer seems to make no distinction between hiring an escort from an agency, and picking a women up off the streets. From what I understand women working for escort agencies are perhaps less vulnerable, and exploited than women who are forced to work the streets.

All of these articles drew a lot of reaction from the autistic community. There was anger of course, but the overriding feeling seemed to be one of frustration. How many more ridiculous stories about autism are there going to be? We live in a world where, based on one debunked lie from a disgraced former doctor, thousands of people believe that vaccines cause autism. A world where people can go on T.V. and claim to cure autism by changing children’s diets. A world in which some parents will buy and then feed their children bleach because some con-artist has sold it to them as a cure for autism. And not just a world where every school shooting is linked to autism, but now a world where professionals think it`s OK to go in a national news paper, and link terrorism with autism as well.

There are of course other issues: hate crime, so called mate-crime, benefits being slashed, lack of employment for autistic people, autistic people being locked up for years in institutions with no good cause, and there are stories in the media of parents killing their autistic children, and almost being given a free pass by the press due to the stress of `putting up with` their autistic child for so long. I could go on.

It might sound like I am being negative, but I am just stating the facts when I point out the issues that face the autistic community. It`s important to recognise what these issues are if we are ever going to do anything to deal with them, and bring about some changes. But sometimes it does feel overwhelming, and that’s where the frustration comes in. Autistic people want to do what we can to fight against the levels of ignorance in society, but when we see that ignorance floating down from the top levels of the professional world it can feel as if everything we are trying to do is being undone by those who claim they are trying to help us. And it`s not just professionals, it can be some parents too, like those who cling to the idea that vaccines cause autism.

I feel – and this may sound a bit self-serving, but I am not just talking about myself here – but I feel that reading the writings of autistic people is the best way to understand autism. I know when I read other autistic peoples` blogs or posts on twitter I lean more, and recognize more that I never realised or thought of, than I do reading any study or report. And yet it seems that for the most part it`s harder for autistic peoples` voices to break out of the autism community, and in to the mainstream than it is for parents and professionals.

What I mean by this is that autistic writers and bloggers talk a lot of sense, and yet it feels like our voices are mainly being heard by those already in the autistic community. This does not mean there are not some well-known autistic writers in the mainstream such as Temple Grandin, or that nothing autistic authors write gets picked up by the media. But I do think overall it is harder for us to get our voices heard. Where as a professional – and to a slightly lesser extent a parent – can have an idea and no matter how silly it is, or how detrimental to autistic people, it can and often will get mainstream press coverage. Leading to ideas such as autism being caused by vaccines, being cured by diet, or being linked to screen-time filling up peoples timelines, and becoming part of the casual view of autism held by those who are not autistic, and don’t know anyone who is. Whereas genuinely good, thoughtful, insightful, and helpful ways to deal with real-life issues facing autistic people are often stuck within blogs, or on message boards being viewed by only a small amount of people.

It feels as if what you have to say about autism matters more if you are someone who works with autistic people, or a parent of autistic children than if you are autistic yourself. This makes it harder to fight the other battles that need to be fought when those who are meant to be helping you hold so much more power than you do. Even more so when they use that imbalance of power to spread silly or dangerous ideas, and to add to myths and stereo-types around autism.

Often, all the responses to articles like the ones I talked about above will only be read and spoken about in the autistic community, whereas the articles themselves are out in the mainstream.

So what? You might think that as long as autistic voices are being heard by autistic people what’s the big deal?

Well it`s the mainstream that shapes the view of society as a whole, that gets read by the next generation of parents and professionals, and helps to shape their view of autism and autistic people. And I, for one, would rather have those views shaped by the writings and thoughts of autistic people themselves.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

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

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

Autism, and the confusion around receiving gifts …

Sometimes being given a gift can be awkward for anyone; they might be given something they don’t like and have to try and pretend that they do like it. But for people with autism even being given something they do like can be awkward: knowing how to react, what to say, how you should look, and things like that is not something that will come naturally to most autistic people. So why can receiving a gift feel awkward? And what can you do about this?

What do you do and say if someone gives you a gift? This might sound like an easy question to some of you – you just say thank you and then open it. But the fact that you are meant to say thank you is one of those unwritten rules that can be so hard for people with autism, and they might just not think so say thanks. This might be even more likely if the gift is not given on their birthday, but is a random gift. They are not in the mindset of being given something, and it will take them by surprise, and saying thank you just might not occur to them. That’s not because they are being rude, it`s just because saying thank you is not something that is automatic to them as it might be to someone who is not autistic. I know that when I was younger often I would not think to say thank you without being prompted, and once someone had pushed me to say it I would often feel embarrassed, and try and get out of saying it.

But even now that I do know to say thank you I still find it hard on Christmas morning to know if I should say thank you after each gift, or just once at the end. Should I say thank you after a big gift, but at the end if its just a few small things? Would it be odd to thank someone after each gift if you are sat next to them and opening the gifts one by one? Or is it rude to not say anything? Does it matter? I genuinely do not know.

I tend to say thank you at the end. I open anything I happen to get and then thank whoever gave it to me once everything is open. But even then I feel unsure. How long should I look at each thing for? I am going to spend a lot of time looking at them in detail later on, but is it OK to just turn something over in your hands once and put it to one side after someone has spent money on it? Even if you plan to look at it later on? Again I am not sure. I tend to do this, but I do not know if it’s the right thing to do or not.

Added to that for me – and I am sure for other autistic people – is the fact that it can be hard at times for people to read my face, and tell how happy or not I might be about whatever they have given to me, and even when I speak my voice may well be flat. I might look up with a blank face and say in a none-too-excited voice that I am very happy with what I have been given. It would be hard to blame someone if they though I was lying about that. Lots of autistic people say that they find it hard to put emotions in their face or voice – that’s not to say they will not be there from time to time, it`s just hard for us to force emotion to be visible.

There is also the fact that once someone has given you something you are no longer in the background; you become the centre of attention for a while as people watch to see how you will react. This in turn makes you think more about how you react, and makes you doubt and second-guess yourself more.

Like everything in life there is an unwritten etiquette to being given gifts, and like all unwritten rules they can be hard for autistic to people to understand. What I tend to do when I am given a gift is to say thank you once I have been given it, and again after I have opened it. If it’s a birthday or Christmas I will open them all then say thank you after that. I don’t know if this is the right thing to do, and it`s hard to really ever be able to tell; as with a lot of things you just need to do what you think is right, or what comes naturally to you. Being given a gift is meant to be a fun thing, and whoever is giving it to you most likely would not want to think of you being worried about what you are saying or doing in response.

You can find my book here  : http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum.html/ 

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

Twitter https://twitter.com/ASKPERGERS

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

AUTISM: when you plan for a change that doesn`t happen …

It’s a well known fact that change is hard for people with autism. If we are going to cope well with it we need to spend time planning for it and be ready well in advance. But what if the time comes and in fact things do not change as we thought they would? Is that a good thing, and can we just get on with our old routine as if nothing has happened? I cant speak for everyone, but for me the answer to this is No. If I have spent days or weeks planning for a change, and going over it again and again in my head, and then the moment comes and I am told it is not happening that will throw me even more than the original change would have done. I can give you a recent example of this, and attempt at least to explain why it impacts on me in the way that it does.

Last month my Mum was due to go in to hospital for surgery. She would have been in for a few days but then after she came out she would have needed looking after for quite sometime. Things would have been very different; I would have been doing a lot of the jobs, we would not have been getting as much writing and ASK-PERGERS?social media done, and my Dad would have been coming around more. While none of this is bad in itself it would have been different, and therefore I needed time to plan it and get used to the idea in my head. We talked it over a lot, planned what time I might get up, what time I might do the jobs around the house, how we might still get some writing and editing done, what I might make to eat, and just about everything else. We knew we had to plan otherwise we were leaving ourselves open to things going wrong. As far as we knew we had everything planned and set up to deal with the change that my Mum going in to hospital would bring – only she ended up not going in.

I should point out that we did know her operation might not go ahead, and in fact I was not at all shocked when I got the text from her a few hours after she had gone to the admissions unit telling me there were no beds, and she had to come home. It’s just one of those things that can happen, and has been happening more and more lately. But even though none of us were surprised at this change of plans it did put us in a strange place. We were all ready for things to change; for the normal routine to be put on hold for a while and a new routine to take its place, and now none of this was going to happen.

So what is meant to happen in this or similar situations? Are you just meant to wake up the next day and get on with your normal routine – that thing you have been telling yourself for weeks you wont be able to do. For me it does not work like that; it has been a month since my Mum was meant to go in to hospital, and I don’t think we have really got back to any kind of normal routine with work, the house, going out or anything since then. That’s not to say we have not done anything productive, but we have not done it in a routined way. We spent so long getting in to the mindset that our routine was going to change that we have been unable to change back, and get in to our old routine when there was no need for change.

I don’t know about anyone else with autism, but I can`t plan for two possible outcomes in a situation like this. I can plan for the change of routine, but that takes so much planning, and so much time to get used to I don’t have any space left to make a real plan for what will happen if that change does not take place. Just looking at this one situation, how can you make a proper plan for something that is so uncertain? It’s OK to know in the back of your mind the change might not take place, the operation might be cancelled, but what then? When will it be rearranged for? A week? Two weeks? A month? Will there be a set date for it? Or will it just be when ever they can fit it in? All these things would need a plan of their own, but we have no way of knowing which one we would be planning for until after the operation was cancelled. What about things that we decided not to do as Mum would be in hospital? Do we plan to do them now that she is not going to be in? Or would it be best to just leave them?

For me it’s too much to think about and too uncertain to plan for. I can plan for a change to my routine – even though that is hard enough – but I cant make any real plans for a change to the change. I just have to deal with that as and when it happens. But that is not easy to do; not knowing what is meant to be happening or when tends to lead to nothing or not much getting done, and the stress of this added to the stress of the change can lead to meltdowns. This has been the case over the last few weeks, and I am not to sure what we could have done to prevent it. As I say planning for something so uncertain is hard to do, and there is something of a feeling that with so much change back and forth meltdowns were bound to happen.

You can find my book here http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum.html/

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

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

The Long-Term Impact of people with Autism being detained in Hospitals

I am sure anybody reading this will be aware of the various stories about people with autism being taken away from their families, and forced in to hospitals.  But just in case you are not, I will briefly refresh the situation.  Across the country various young people with autism have been placed in the care of hospitals and ATU`s.  This is often against the wishes of themselves, and their families.  The institutions that they have been placed in are not specifically designed to support people with autism, and often very vulnerable people are being placed among those with significant mental health issues, and drug and alcohol addictions, and this is clearly not an appropriate environment for someone who isn`t facing these issues. There seems to be no upper-limit on how long people with autism can be kept in these institutions.  The families are often turned away when they attempt to visit, and visiting in itself is difficult as most of these places are located many miles from the families’ homes.

I suppose what I wanted to talk about in this blog isn’t so much the moral issues, as they have been discussed many times, and it is fairly obvious that it is not right to take people with autism away from their families, and keep them for an extended period of time in an inadequate facility.  What I am really talking about is some of the actual practical effects this could have on the person. This is based on being somebody with autism myself, and imagining the impact that something like this would have on me.

First of all let`s look at why these people are being detained in the first place.: there doesn’t seem to be any one particular reason for admitting them in to hospital; some people are asked to voluntarily stay there for one night, and find themselves still locked up months later.  Some are meant to be there for a few weeks, but are then not allowed to leave – despite their families knowing it is the wrong place for them.  Others are in places that are close to home, and then suddenly taken away to other places, hundreds of miles away, that are not equipped at all.  In reality it all seems fairly murky.  There should be no reason for forcibly taking somebody with autism to any kind of institution, so of course the excuses and reasons will seem flimsy.  Whatever people may try to tell you, autism is not a mental health condition.  Now at this point I feel that I do need to point out that sectioning somebody who has a mental health issue under the mental health act is different – it might not particularly be easy or nice, but sometimes it has to be done if someone is a danger to themselves or others.  But the key point of sectioning someone is that it should be done to ensure the person gets the best support, and care that they can – mental health professionals are supposed to come and check where somebody who has been sectioned is staying, and if their treatment is right for them.  Now people with autism shouldn’t be sectioned under the mental health act as they don’t have a mental health issue.  But even if the person with autism does have a mental health issue that is separate to their autism, the way they are being treated is still wrong.  Parents might have agreed for their children to go to an ATU for example, just for a few weeks so that they can be assessed, and ultimately helped. Consent for assessment and treatment should in no way imply that what has been happening to families up and down the country is ok.

The idea here appears to be a basic level of misunderstanding, and ignorance around autism; somebody is autistic so they are having meltdowns, so they are detained and sent to hospital or ATU – often hundreds miles from home.  They have their time outdoors, and their contact with their families restricted – in a way akin to somebody in prison.  They don’t know when, or if they will ever get out. So let`s do a list: here we have uncertainty, change (routine, location, people, environment) we have sensory issues: sights, sounds smells, we don’t have any of the things that may comfort, or calm a person i.e., particular possessions, or contact with family members and friends.  I think this would provoke a pretty negative reaction in most neuro-typical people, but in autistic people – well I know I would be bound to have some pretty serious meltdowns if I was in this situation.

There seems to be a principle that the more negative aspects of autism can be treated or cured if the person with autism is kept in a medical facility for long enough – this is nonsense.  As myself, and my family can attest to, the only way to help minimise the impact of outbursts and meltdowns is by a lot of hard work being done at home  If you add in all of these other elements you are never going to solve the problem.  There is a huge difference between a specific respite care centre for people with autism, that is fully staffed with competent highly-trained professionals, and allows visiting and freedom of movement for the autistic person, and somewhere hundreds of miles from home that is set up to deal with individuals with complex mental health issues.  It appears that people are trying to treat autism with methods used for completely different issues.  A good way of thinking of this is to imagine yourself turning up to A&E with a broken leg, and finding your arm being put in plaster – when you ask why you are told that the doctors knows best, and you just have to stick with it.  As time goes on your arm is still restricted, and you can feel your leg becoming ever more painful.  You are told that you can have the plaster off your arm as soon as your leg heals.  Because that is a physical example it is much easier for people to understand.  The concept, when it is translated to something inside the mind becomes much more complex for people – simply because they cannot see it.  But for anyone who has any concept of autism, what is happening to these individuals is no less ridiculous or frustrating.

We have established that there are absolutely no benefits to people with autism being locked in ATU`s and Hospitals – often many miles from home – and that this is a very strange, and unpleasant situation.  But if there won’t be any lasting benefits, will there be any long-term effects at all?  Well, there may well be.  Again these are just thoughts from my own head, and I don’t want to imply that these are things that will happen to everybody that is in this situation.  I am again just using the way my own mind works as somebody with autism, and tying to imagine the effects that something like this would have on me.

I know first-hand, again from my own personal experience, and from talking to a lot of other autistic people, that one big change to routine, or one particularly busy social event can have implications that can be on-going for months.  It can cause feelings of sensory overload, which can lead to depression, or severe outbursts, or even physical illness.  And that can be, as I say, from only one event, or particular change.  If we are talking about somebody spending months, or even longer, experiencing these thoughts, feelings and emotional overloads daily, then the idea of how long the after effects could remain is incredibly daunting.  I don’t want to be pessimistic, but the impact of something like this wouldn’t be over quickly for anybody – least of all somebody with autism.

There is also the worry that even though the autistic individual might not have any mental health issues when they are admitted to these places, an experience like this could easily bring on conditions such as depression and anxiety.  These are unfortunately common in autistic people, and are likely to be triggered by their experience.  They might not be present at all before somebody is admitted to one of these places, but they could well become apparent once they have been they are released.

Another unfortunate consequence is the damage that being detained can do to the work that has already been done to help the autistic person.  I know myself – again from experience – that it can take a life-time to build-up certain skills.  The impact that being locked up for so long can have on social and communication, and independence cannot be underestimated.  I can`t say for sure that this will happen in every case, but it does certainly have the potential to knock the skills somebody has developed right back to basics.  So not only it is a completely ineffective treatment, it could also destroy everything the individual and the family have worked for, and achieved.

All of the above hasn’t even taken in to account what the various drugs forced on these individuals could do to them.  The commonly accepted facts about drugs prescribed to people with mental health issues is that they generally would cause some kind of side effect – but that this may be worth it for the positive effects.  The problem here though is that because people with autism don`t actually need these drugs, they don’t get any positives from taking them, and are simply left with the after-effects – whatever they may be.

These are just a few thoughts that I have had as a person with autism, reading about these families.  I am sure there are a lot of other issues that people who are more directly involved in them can bring up.  I understand that at times some of the people who work in these places, and perhaps even the people who arrange for the autistic person to be taken in, might think that they have that persons best interests at heart – as hard as this may be to believe – but good intentions don`t meant anything unless they are backed-up by good and positive actions.  And in this case, actions are definitely speaking louder than words.  Whatever is happening, whatever the justification for it, it is wrong – plain and simple.  The sooner not only the professionals, but the general public wake up and see this, the better.

My new book:  http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum.html/  

Links to families who have been affected by this issue, and campaigns that have emerged because of it:

https://www.facebook.com/JusticeforLB?fref=pb&hc_location=profile_browser

And the LB BILL

http://lbbill.wordpress.com/2014/11/04/lbbill-draft-one-launched/

http://michelledaly.blogspot.co.uk/2014/11/warrior-mum-nina-nis-journey_22.html

And the petition

https://www.change.org/p/nicola-sturgeon-bring-my-autistic-son-tianze-back-home-to-scotland

http://michelledaly.blogspot.co.uk/2014/06/warrior-mum-leos-journey.html

And the petition

https://www.change.org/p/nhs-islington-bring-my-son-stephen-home-care-for-him-in-our-community-bringstephenhome

https://www.change.org/p/wigan-mbc-adult-social-services-and-calderstones-nhs-don-t-send-my-21-year-old-autistic-son-to-another-secure-hospital-assess-him-using-top-experts-we-can-recommend-to-have-support-to-live-in-the-community-and-flourish-as-a-human-being

https://mail.ntlworld.com/mail/u/0/#inbox/1499c361075e8da4

http://justicefornico.org/ (not specifically autism, but still relevant)

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

Twitter https://twitter.com/ASKPERGERS

Facebook https://www.facebook.com/ASKPERGERS?ref=hl

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

Dyslexia real or not?

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

There are a few points I would like to make:

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

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

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

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

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

 

 

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