Tag Archives: why

Why are we still hearing that more Males than Females are Autistic?

Women and autism has long been a controversial topic. For years many women were diagnosed as schizophrenic, depressed or just ignored instead of being given a diagnosis of autism. But now a lot of these women are taking matters in to their own hands, and forcing the world to look at autistic women and girls in a new light. You only have to spend five minutes on Twitter looking through their stories to see the common thread. They had a child/friend/husband with autism, or just read up on it, and felt that perhaps they were autistic, and then went to a professional to have that confirmed, and were either flat-out refused, or were told that they could not be autistic because, they had friends, children or could talk to the Dr/psychologist, and sent away again. A few years down the line the strain of living with undiagnosed autism, while trying to act and live like a non-autistic person, becomes too much, and they have an autistic crash. There are a lot of cases of late diagnoses or self-diagnosis, and as I say most of the stories follow a similar path. It should by now be clear to us that women and girls are autistic too, and that we need to take notice of this, and make sure that they can get the acknowledgement they need earlier in life. But there is one statement that is still thrown around far too much in my view, and perhaps it is one of the things holding us back.

`There are far more autistic males than females`.

Think about that for a second. It’s something I can recall hearing years ago, before anyone worked out a female profile for autism, and before the boom in autistic women coming out, and making the professionals sit up and take notice. But why do I still see it so much today? We know now that autism does not just present itself in one way. Now I don’t believe in a female/male profile per-say, as I know some men who would fit the so-called female profile, who therefore went undiagnosed themselves for years. That’s not to say that the female profile has not been a huge help and that a lot of women do not fit in to it, it’s just to say that we want to keep learning more and changing our ideas, instead of getting stuck in a whole new ridged way of thinking about things. There are a lot of autistic women out there now who would never have been diagnosed without the `female profile` though, and what it does show us is how blinkered professionals have been when it comes to giving out diagnoses of autism. When you think that we have known about autism for less than one hundred years, it seems strange that we should set such clear, unmoving statements as `There are far more autistic males than females. `

Let’s look at it this way – we hear some people in the media talk about an `autism epidemic` and about how `there was no such thing as autism in the past. ` We know that this is a silly argument. We found out what autism is, and the more we learn about it the more we can notice it in people. Therefore more people are being diagnosed as autistic. It’s not hard to work out.  And I think the same goes for the statement about more men being autistic than women, or boys than girls. We might have more males on the books diagnosed as autistic than females, but I would be willing to bet that this is only down to the fact that most of the women or girls who are diagnosed have to fight for years to get that diagnoses. It’s as if the system said “Women and girls cannot be autistic.” and then made sure it was so, and that fact would remain true by refusing to diagnose them for years. When we look at the amount of women who have been forced to the point of having an autistic crash, and losing their jobs, as well as suffering from related mental health issues due to this, it is clear that something must change.

Perhaps the first step in this would be to stop saying that more males are autistic than females, and just stop worrying about those numbers. Assess everyone on their own, and not as a male or female, and see if they are autistic.  Don’t let their gender play a part in your thinking.  We know that autism can present in different ways: sometimes in outbursts, sometimes in being quiet, sometimes in being unable to understand emotions, sometimes in being too empathetic to others to the point of neglecting yourself, and these points, along with other things, are what we should think of when we think of autism. Not one set idea that only applies to one small section of society.

You can find my new book: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34253.html

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?

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

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Autism & Animals Book – and why writing such a positive book has been so hard for me …

Today, June 16th ASK-PERGERS? new book, Autism & Animals – the benefits of animals for autistic people, will be published as an E Book.  We are looking forward to the book being published and hoping that lots of people read it, and enjoy it.  The book takes a positive look at the relationships that often form between autistic people and animals, and the benefits this can have on things such as confidence and self-esteem, understanding and expressing emotions, and on our general sense of well-being.

The process has been quite stressful, partly because although we have two books published already, and Paddy-Joe has a book coming out very soon of his own, all of these have been published through a professional publisher, and so the Autism and Animals book is our first attempt at self-publishing, and it wasn`t as straight-forward as we`d hoped!  In fact we have really struggled to get printed copies, and have settled for the electronic version for now to prevent further delay in publishing.

However, these difficulties are not what has made the writing and publishing of this positive book so hard, and so stressful for me.  I don`t want to go in to too much detail, but the past year or so has been the absolute worse time of my life.  Both Paddy-Joe and I have been through some really horrendous experiences – the death of one family member who we loved more than it is possible to say, the near death of a close and equally loved family member, who remains on palliative care.  An investigation in to the death (I can`t say any more about that) and another family issue that has been extremely stressful to the point of making my son and myself very ill.  All of the above has meant time away from my autistic son for me, and a complete disruption to his routine.  This, along with anxiety and grief have caused him to have increasingly explosive meltdowns on most days.  I really can`t describe how scary they have been for both of us, leaving us with chest pains, dizziness, and an extremely low mood.   There has been more, so much more, too much to write here, and too personal for social media.  We are both exhausted, and completely burned out.  For over a year now I have felt unable to work on ASK-PERGERS? and have left most of the work up to Paddy-Joe.  I am trying to rectify this, but still most days my depression is such that I am unable to interact, even on social media.   My son isn`t feeling much better, but he has done his best to continue with our autism information and advice service through Facebook and Twitter.

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So why did we press-on with completing the Autism & Animals book (which I came so close to scrapping so many times)?  It is partly because we didn’t want to let anyone down.  Lots of individuals and families contributed their stories and experiences to the book.  We had already started writing the book before our lives were turned upside down, and we had to keep postponing completion of the book, and then postpone publishing due to our personal circumstances, and the way we were feeling.  However, my son encouraged me to continue with the book, and we worked together on it as often as possible.  With weeks on end spent at the hospital, often awake all night and all the following day, no proper food or rest it was extremely difficult.  And when I was at home with my son he was so agitated by everything that has happened and so overwhelmed that the meltdowns were (are!) coming thick and fast, and each one completely wiped us out.  However, my son kept reminding me that we had made a commitment to the people who had contributed to the book, and they were all so kind and patient, that we pushed on, and finally the book was ready to be published! We also wanted to publish while our dogs – Fred and Poppy, the inspirations behind the book – are still with us as they are quite old now, and have a few health problems.

Our lives remain extremely difficult at the moment, although not as chaotic and distressing as they have been over the past year and a half.  We are trying to get back to some sort of normality, but this is hard as many of the issues are still on-going.

I am so glad we didn`t give up, and now have a lovely book to share with you all J

The book is dedicated to my parents, and published on June 16th as it would have been their 63rd wedding anniversary, if they were both still here to celebrate.

The book is a testament to the loyalty, intuition and strength of animals.  And shows just how beneficial they can be for some autistic people.

And here`s the link for anyone who may be interested J

The book is called Autism & Animals – the benefits of animals for autistic people – and is priced at £4.99.  And I can`t believe it is finished at last!!

https://www.amazon.co.uk/dp/B01GO1N1X6

Jane Donlan x

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?

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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 and gaining weight.

This might be a sensitive subject for some, but I read an article the other day that was saying autistic people have a tendency to gain weight, and that most of us are overweight. It got me thinking why might this be? And is it an issue or not? I believe that if is this true then a lot of it will be down to routine and eating habits. Nothing ground-breaking there – that’s what most weight gain is down to – but how might being autistic impact on this? Below are a few of the reasons I think autistic people might gain weight, or find it hard to lose the weight they have gained.

(1) Not caring about appearance: The first thing that needs to be said is that none of these points will apply to all autistic people. There are some autistic people who care greatly about the way they look. But there are also a large number of people who could not care less about how they look, or what people will think about them. There are two main reasons people like to be slim, and in shape. One is for their health, and the other is for their looks. Being motivated by looking good is not a bad thing; it can push people to eat right and work-out. But if you are happy to go through life without caring about how you look, or what others think of you, then gaining weight is easy to do.

(2) Only eating certain foods: There are some autistic people who feel unable to eat lots of different foods. They have a few things that they are able and happy to eat, and they have these same foods day-in, day-out for years. If these things consist of pizza, ice cream and chips then it makes sense that they would gain weight. The thing is, it’s not a case of someone being a fussy eater – there is a lot more to it than that – so even if someone wishes to lose weight, changing what they eat might be extra hard for them to do.

(3) Fitting in the time to work-out: If you are autistic and have a carefully constructed routine that helps you get through your days, then it’s hard to change that, and work something else in to it. You have to decide how much you want to work-out, and when you want to do it. And you then have to change your routine, and fit it in.

(4) Where to work out: Talking of working-out, what about gyms? They are noisy, busy and packed full of people who wish to talk to you about their workouts. It might not even be that the autistic person does not enjoy the gym; they might just not feel able to go all that often due to sensory overload. It could be that they plan to go, but have a stressful day and cannot. So what about running? Well again you have to go out and about, and if someone suffers from anxiety, or they are worried about bumping in to people they may be expected to talk to then this might be hard for them too. A lot of autistic people, including myself, do the bulk of their work-outs at home.

(5) Stress eating: It is well known that many people eat when they are stressed out – not just autistic people, but most people. I am sure there are all kinds of psychological explanations for this, but I don’t know them. If you have had a bad day then sitting down to a nice meal, and something sweet afterwards is a great way to end your day. But eating to help with stress or anxiety is not a good thing, and if you’re autistic and likely spend a large part of your time stressed or anxious, it is a recipe for disaster. If you feel anxious and stressed on an off all day, and every time you do you eat something, no matter what it is you’re going to gain weight. But if that something is crisps or chocolate then you’re going to gain a lot of weight.

(6) Finding it hard to break from routine: I talked about how it might be hard to find the time to fit something new in to your routine, but what about cutting out old stuff? Well if someone is in the habit of getting a takeaway once a week it might be hard to get out of that habit. But if that person is autistic then changing an established routine is going to be even harder. Making changes to diet and where and when you eat is not easy, and everyone finds it hard, but if that routine is a key part of how you get through each day then it’s going to be even harder. It might be best if you are autistic and looking to lose weight, to change things bit by bit. Think about, and plan the changes out well before hand, and don’t just rush in to them.

As I said at the start, not all of these points will apply for all autistic people. Everyone is different, and not every autistic person will struggle with their weight. Also it is important to say that being overweight does not have to be a bad thing. If you are happy with the way you are then I would say don’t worry, just relax. That being said even if you are happy with the way you look you might want to think about losing weight for the sake of your health. If you do want to change your weight then think about some of the points above, and work out if any of these issues are what is stopping you from losing weight, or making you gain weight to begin with.

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?

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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

Why I`ve decided to take a year out of university ….

I was due to start my second year doing film studies at university at the end of this month, but I have decided to take a year out.  There are two main ressens for this.  One is my work. I wanted more time to work on my writing, and autism talks than I would have got if I was going in to the second year of a university degree.  And the second reason is that the last five or so months have been so stressful, and full of difficult things that I need a break.  But underpinning all of that is why my autism affected my time at  university.

I have to say I got a lot of help when I first enrolled, and I can’t fault my university for the way they have helped with both my autism, and dyslexia since classes began.  But I think my conditions still made my time there harder than it would otherwise have been.  I don’t drive so to get from my house to my university I have to get two trams.  This is OK when I am traveling mid-morning to mid-afternoon, but when the lecture does not end until five, or starts at nine I ended up traveling right in the middle of rush hour.  As the year went on it became harder and harder to do both the traveling, and the lectures in the same day.  If I had a three hour class the last thing I wanted was to get straight on to a packed tram, and have to fight my way off only to get on to an even more packed tram.  And if I had got on the two busy trams in the morning I felt too overloaded to be able to pay close attention to my class.  I also found it hard to balance my university with my autism-related work.  My aim is to one day make a living from my writing so I feel that it is something I need to put a lot of time in to in order to make this happen.  But I found that even in my first year I was expected to do so much reading and work out side of the class room that it ate in to my time for writing, and planning talks. Now I do feel that if the traveling, and overload after class had not been an issue this might have been OK.  But once I had been to a class I found it hard to do anything else that day, and if I knew I had to go out to a class I found it hard to do anything in the time leading up to that.  This meant that three days of the week were spent doing nothing, but being in university. Add to that the fact that each class came with a group project that meant you had to come in on other days, and meet up with your group.   I felt I had hardly any time at all to do what I think of as my real work.

So in the end I decided to take a year out. I want to take some time to relax, and try and de- stress, but I also want to use this time to work, and write a few more books.  It took me a while to decide, but I feel now that I made the right decision.

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.

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?

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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