Lyndalou

Interesting topic Warrior... By all accounts, what I've heard is that it is thought that a lot of spectrum kids in particular like Thomas because of the exaggerated facial expressions of the characters and simple black and white/right or wrong storylines. If a character behaves in a certain way they are a 'really useful' engine or they've caused 'confusion and delay'. My little boy likes Thomas and for some time when he was more echoliac he would use phrases from the programme - if I was annoyed with him he might say 'Cinders and ashes' or 'Mummy puffed' for instance. I've heard that Star Trek could be a lot to do with logic (the Vulcans) technology and the understanding of and misunderstanding between various cultures (sound familiar?). An ex of mine had the entire Next Generation collection!! Star Wars may be similar to above but also because again it's good against evil/right and wrong etc... ?? re others but I like Woody...you got a friend in me!! Lynda

In one job, I know that I wasn't able to fulfil what was in my job description very well because I was overwhelmed with everything I was meant to do. I asked for help but I was told I didn't need it; I had requested extra training because I was actually teaching myself on the job while 'teaching' other people what to do. I knew that I didn't have the skills necessary and knew that those who I was supervising knew I was blagging it all the way! I had stepped into the post when another member of staff went off sick with stress. I had a triple role; I was running a business (while teaching myself how to make the product we were selling), overseeing staff with mental health problems (some of whom refused to co-operate with me because of my gender and my age) and I was also meant to oversee the staff running 2 other departments. It was this part of my job that totally went by the wayside and this is when the bullying began. I repeatedly asked for the bullying to be dealt with too and was told that as it was not 'observed' so there was nothing that could be done about it. The 'promotion' I had been given I had neither requested or applied for - I was actually given it as a 'thank you' for previous work I had done and in hindsight I should have turned it down but I was in desperate need of the payrise back then! My boss was prone to say that being a boss was all about delegating and he was very good at that meaning that the staff were handed some of his job to do too. I will never again work within mental health in this type of capacity...it's not good for my mental health!!

Yep, I know that guilty feeling when it's pointed out you've been a bit slack! It doesn't matter how much you tell yourself that you work very hard the majority of the time, you think that when you've taken that extra bit of time out or not put in your all even though you know that the person making the comment only works half as hard as you, you still feel guilty. Of course, when I say 'you' I actually mean 'I', lol! There's always been an anxiety that comes over me when someone makes this type of comment because I simply don't know what the 'acceptable' amount of effort is for each job. All I know is that I've had to work hard and I want to work hard but I also want to be appreciated for the effort I put in! Over time, I have recognised the importance of breaks in order to be able to be mentally able to do the job much the same as you need propler nutrition in order for your body to function properly - that is never easy though as I always find something to do!

Darkshine I know you are absolutely right and if I take a step back I can see that clearly. I think the problem is at the moment that I am mired in obsessing about what it means to be an undiagnosed or as Treskster puts it a pre-diagnosed Autistic because as you say, even with a diagnosis it's hard to be taken seriously and I'm so sorry that your family treats you that way. My mother is the one person who believes me and given that I've had an awful lot of issues with her over the years with me only really reconciling my feelings towards her in the last few years, this means a lot. I had a bit of an epiphany. I now know why the situation with my friend has upset me so much and can't believe I didn't see it before. It also is a lot of the reason why I feel so hurt coming on this forum and feeling brushed aside. It all comes back to me being 11 years old all over again. It's the feeling of sitting on my step in the playground for weeks on end by myself and ignored by my classmates, left unnoticed by the teachers and having parents I reached out to laugh at me. It's the feeling of anger and absolute helplessness and of not having any idea what to do and who to trust. The situation with my friend right now is a replay. She is popular and attracts people to her like bees to a honey pot just like my friend in primary school did with my 7 years strong classmates. I had worked hard to have a certain rapport with my neighbours who I viewed as (low level) friends who are pals with my popular friend. I had thought that the main thing that upset me was that she has a disabled child and that other people see her situation as more requiring of support than mine. However, it's actually that I know she has 'influence' with other people, even if she doesn't say anything explicitly, that people are onside with her and I am now sitting by myself on my sofa worrying about who to trust and how far her influence has spread. I come on here to look for support and I know that the difficulties I am experiencing right now colours my view of discussions and makes them more personal. Thanks for putting things in perspective. Lynda

It's very hard when people are clearly disapproving and in the case of this couple, downright ignorant in their attitude towards your child and your parenting. You can only do what you feel is right at the time and as you say, your son was sitting happily and there is no reason why other people should act this way towards you. Unfortunately, it will happen over and over because often people simply don't understand but hopefully in time you will start to be able to turn a blind eye or at least know the right way to react in each situation. There are cards that you can get from the NAS which state that your child is autistic and that this is why they are acting or reacting in a certain way. I think they are called Autism Alert cards. I don't have them as I have not as yet felt the need for them but they may be helpful for you if you don't know what to say to these people. You simply have to walk over and put it on their table and I would think they would be quite embarrassed and at least might stop staring and pointing! It doesn't happen very often but there was the one time that my little boy was on a slide with other little boys and he chose to sit at the top, making it difficult for the other children to get past because he didn't want children coming down the slide behind him and he was apprehensive about children coming up the steps. He was getting upset and it was clearly he was acting a little unusually. I just casually said to the other mother who was standing at the bottom of the slide that he was apprehensive around other children and quickly we got onto the subject of developmental disabilities. She was absolutely fine with it and gave guidance to her boys accordingly saying that my son was a 'bit shy' and to let him have a turn as I coaxed him to come down the slide. It's a breath of fresh air when this happens! You see, there are those who are more sympathetic in amongst the numpties!

Thanks Robert, I'm actually not in work at the moment but this is a lot of the reason I fear returning to work in any shape or form. I am in the very fortunate position that I would no longer have to do a full time job but this issue is something that I know would affect me even if I did a part time job. I'm doing voluntary work at the moment, working towards a common goal to set up a family group as part of a team and I've found that similar issues have cropped up, even doing this. You are right in that if I returned to a paid job I would have to work hard to ensure I took proper breaks and went home on time. For this reason, it's always been easier for me to do shop work or something that has defined breaks and people who take over from me at the end of a shift. For this reason, I've decided I would just do something like this if it's for some extra money but if it was to 'work' I would work by myself from home. I suppose this is teaching me more about myself and how I view things and it's a learning curve yet again which I didn't see coming. I had to undergo a number of months of work councelling in a workplace around 10 years ago as I was informed that my standards were too high and I expected too much of people. This intensive period of 'retraining' if you like did help me to see things more broadly in the workplace in terms of people's roles within teams and working to people's strengths. What it didn't really address however was that some people you work with have an ability to shift responsibility for work and how it is best to deal with this as different situations arise. I've found that often there are all sorts of reasons why people shirk work and I don't really know how to distinguish what are 'genuine' reasons from 'not so genuine' ones and how I'm supposed to respond. I automatically find myself questioning my own standpoint while at the same time having a knawing suspicion I'm just being taken for a mug (and a bad team player when I complain). I completely agree with you that people just expect to step into well paid jobs now without doing all the dogsbody work first and I believe this nitty-gritty stuff can be what you learn from the most. I find it hard to see graduates complaining when I know all the menial jobs I have done!

All I can say is 'Ain't you the lucky one to have found these amazingly receptive and clued up professionals who see further than the end of their own noses?'. Do you know, my child is diagnosed and no-one gives much of a monkeys about him. All I get is 'He's not that bad' and 'Hasn't he come on' and people don't really think he's THAT autistic because he says 'Please' and 'Thank you' and doesn't flip out at the supermarket. He's chatty and friendly so it doesn't matter that his chatter consists of an awful lot of echolia and he is completely clueless about half the things that are said to him. I remember with clarity my mother constantly saying 'Will you just stop copying everything I say' and that she found it in turns infuriating and very funny that I needed things repeated to me over and over. I still deal with the same problems now that I see in my own child but I get very little support (apart from a wonderful teacher) and all the support I have I've had to fight for. I research autism to help my child and myself every single day. No-one else is going to do that for me. I have read numerous articles, blogs and current research and ran a Support Group for a short while where I was peer-recognised as having AS. I had the OT who worked with me for a number of months when I was in a very bad place after finding out about AS and subsequently being disbelieved, saying to me that I am a 'Pioneer' because she recognised my autism when I was just brushed aside by other professionals 'with experience of the condition'. I don't want to be a 'Pioneer' - I want to be recognised, valued, supported and understood. I've come on this forum for about a year and a half and initially was picked to pieces because I have self-diagnosed and have NO CHOICE but to be. Yes, there are those who perhaps are completely unable to be objective. I've met autistics who have talked to me at a volume loud enough to be heard a mile away but had no notion their voice was loud. There are those who have simply no idea how they come over to others and I'm not saying I'm not one of them but often I'm painfully aware that I'm being avoided or that there has been a change in attitude towards me and I can spend a lot of time trying to figure out exactly what I did or said 'wrong'. For 20+ years I've been trying to better my life and come to terms with various difficulties which I have which are all part of the diagnostic criteria for an ASD. What it would appear is that I have done TOO MUCH WORK, so much in fact that I am not considered to have the condition. The way I am is measured against the expectations of what professionals and parents expect their child or teenager to be able to achieve. I studied abroad when I was 19. This was a big tick AGAINST me having an ASD because the expectations are that kids with ASD cannot do this and are not independent enough to go so far from home. In fact, many women with ASD have actually done quite adventurous things. What was not taken into account was that at the age of 15, I 'knew' I was only allowed to shop in one particular shop when I shopped BY MYSELF in a town 30 miles from where I lived. At the same age I 'knew' that I had killed my old best friend because the hatred that I had for her eminated from me and killed her. I 'knew' I was an evil person who no-one wanted to be friends with or if they did then they had every right to abuse me. When I went abroad I did very little for FUN because I had no idea how to structure my time. Within a week I was in a relationship with a man who only wanted to be around me in order to get to another girl. I became obsessed with being able to count all my own ribs jutting out through my skin and lost a considerable and noticeable amount of weight because I was always too busy to eat, became addicted to the feeling of being hungry and exercised excessively. I always described that year as the reason I didn't end up in a psychiatric hospital because I was convinced I would have done if I had remained in close proximity to people who caused me great mental anguish at home. However, I remember that year fondly for the amazing experiences I had but I assure you I am certain that it would have been a completely different experience for someone deemed NT. Why should I now be penalised for having a 'normal' life with family responsibilities? I even felt it was held against me that we are 'middle class' because of course, so many autistics struggle financially. My lifestyle is as a result of my HUSBAND's job. It would not be the same story if I was the principal breadwinner. Perhaps some people do lie. Perhaps some people are convinced they are on the spectrum and they are not. I am absolutely and totally aware of my own limitations, the problems I have maintaining any friendship I have, the way I crack up if my kids make too much noise or I can't get time to myself, the stress I feel when I can't organise my day. I can assure you that I am not lying.

I've always known that I have a strong work ethic. It's something that I've always thought of as a strength but looking back, I know that it has contributed to what has caused me a lot of problems in the workplace and with colleagues. I was never able to understand the 'laissez faire' attitude of people that I have worked with and even when others seemed to agree that other colleagues weren't pulling their weight, they would always stick up for them with reasons that they were having a hard time of it or they had not been feeling well. I found that it someone's work was questioned then the questioner tended to come off worse in that they (me) weren't sympathetic to the other person's situation etc. I suppose it wouldn't have been such an issue if I hadn't quite often had to actually do more work and put more effort in because others weren't. However, I still tended to end up being in the 'wrong' because of my 'attitude'. No-one ever seemed to appreciate that I worked through lunchbreaks and went home late and quite often didn't claim overtime. A person who did half the work and had long lunches seemed to be appreciate equally or even more. How can this be? I simply don't understand how getting a job done to a good/high standard in the agreed amount of time can ever be viewed as a negative thing? I am still at a loss - it is something I will never understand and I think it will always upset me.

I don't know how to post a link to this blog but this is worth looking at: www.aspergersgirls.wordpress.com Scroll down and you will come to 'Most Popular Posts' At the top of the list is a description by the author of 10 'traits' women with Aspergers generally possess (the author does state that this list is based on a compilation of different women's experience and her own and does not claim that these traits are an exact representation of every woman with Aspergers). Under this is a list of the 10 Myths relating to how women with Aspergers present (same caveat as above applies).

I absolutely do not mean to have a go at you Justine. It's just now been 2 years since my son was diagnosed and not much less time than that since all my own puzzle pieces fell into place. For me that is. Not for the professionals who are meant to 'know' what constitutes ASD and what does not. The OT I worked with last year was moved sideways in her job because the psychiatrist she was under did not like her working with people who had (diagnosed) AS as he felt that the diagnosis was invalid. She informed me that everything I said to her and even the way I spoke was indicative of all the people she had previously worked with who had AS. She asked me to provide my opinion on a piece of research she was conducting into how to write questionnaires regarding anxiety measurement in people with AS. I was very happy to do this because I (and she) was certain I had something to contribute as I have had anxiety difficulties, traceable back to the age of 5 or 6. Her psychiatrist boss is very highly respected in his field of expertise. But, can I respect this doctor? No, I cannot. He, for me represents the very worst of the medical profession with his arrogance and narrow mindedness. He also lied about me to another professional. Doctors are not infallible - as my mum would put it, they have 'feet of clay'. This doctor and many like him are up to their necks in clay.

'While it is stirring for those of us with AS to see all of this attention being focused in our direction, many of us remain without a formal diagnosis, particularly if we don't have a Y chromosone. Females, from the littlest of girls to the eldest of ladies, continue to fly under the radar of proper diagnosis, eventually landing in worlds where they don't belong. Neuroses, schizophrenia, obsessive-compulsive disorder, personality disorder, oppositional defiant disorder, anxiety issues, social phobia - these are familiar diagnoses for women beyond a certain age who struggle to make sense of the environment, society, relationship rituals and the like. Not that these diagnoses are completely off base. The chances are very good that any mix of those comorbid factors also lay on a lady's genetic code. The problem is many counselors and doctors seem unable to see AS crouching in the middle of the huddle. Why then (many of us ask) does a diagnosis of AS remain a guy's thing? Why do researchers still report that AS affects males three to four times more often than it does females, despite top psychologists in the field, such as Tony Attwood, Judith Gould and Lorna Wing, trying to reframe our thinking from 'AS does not affect females' to 'how can we recognise AS in females?'....more and more Aspie women are joining web forums...A voice here or there might not be heard, but the collective voice of women willing and able to share - wow. That's a loud chorus that can't and won't be ignored...and will serve as an important catalyst to encourage contemporary thinkers to have the realisation that a significant number of females do, in fact, have AS.' Liane Holliday Willey Foreward to 'Aspergirls' The psychiatrist who covers my area does not believe that AS even exists. The expert who gave an opinion - that I am autistic 'some of the time' - is a devotee of Simon Baron Cohen Yep, I stand a cat in hells chance of ever receiving a 'formal' diagnosis. Do you think I'm pissed? You bet I am.

I could never think that ASD does not excist in adults that would be rather stupid as it is a lifelong condition and my boys will one day be adults with ASD,what I don't believe in is self diagnosis and so if someone on here is giving advice from an ASD point of view when they only have a self dx I really would not pay much attention to that person. Thanks for that Justine. Makes me feel even better today and that's really quite sh1t!

That is indeed an interesting article. Thank you

Feeling really fed up about this whole topic at the moment. I don't feel believed, listened to or taken particularly seriously at all. I suppose in the 'virtual' world I have a little more freedom to feel like I can share and perhaps some people might 'get' a bit of what I'm saying. In the 'real' world however, I don't think what I say is taken particularly seriously. If you 'look' normal then you really have to suppress the frustration and put up and shut up. I'm finding that very hard right now. I have a friend who has a disabled child who 'looks' disabled. I can't help but feel quite bitter about the 'pecking order' that is afforded to disability with developmental conditions appearing to fall right at the bottom. I feel like she hoovers up all the sympathy and empathy there is because she has perfected her 'look' of saintly mother-of-a-disabled-child.. I can't do this because it isn't me and I'm not false. I don't want sympathy for my son or for myself for being the mother of a disabled child and an adult with this 'disability'. All I want is a bit of understanding but there is a definite lack of it even for my son so I think I can expect about 0.005 % of available understanding going.

It's definitely typical to 'collect' things, put things in order and like the 'look' of things. I quite like certain things to look 'new'. My son has toys in his room that are not really 'played' with as such but every now and again he takes them down and has a look at them - to be honest they are simply ornaments to make his room look nice. The way I approach things now though is not to buy too many things which my son may not have any interest in. There are also things which I have now given to his sister or things I ask them to share. Magically sometimes, if his sister plays with things he has had little interest in before then this encourages him to both develop some play skills and practice sharing. More often than not though, he is more than happy to just play or engage with the things that interest him which are quite limited. I personally feel that children should be taught the value of things and that if things are not used then they should be used be someone who will appreciate them (I am in no way denigrating a child receiving a gift with best intentions as I myself received many toys as a child which I never or seldom played with). There is nothing wrong with your son having a few possessions which are not used 'typically' but also it can't be allowed to get out of control.

Slightly off the topic Caroline but I feel strongly reading your post that you may require some help to address the anxiety issues your child has. Anxiety is very much part of the ASD mindset but in order to functon as best as is possible for the person, that anxiety needs to be managed somehow. Being apprehensive around others of the same peer group is common in people with ASD. I see the apprehension in my son's face when he is confused and uncertain as to how to interact with other children. In myself, I have always called it 'the giant question mark' hanging over my head. It IS frightening but it doesn't have to be completely debilitating. I assume your son attends mainstream school? If this is the case, then presumably he is having to face these fears every day which must be very difficult for him. He is possibly mulling over many things afterwards which impinge on his sleep. Is there any way you can introduce him into environments with children which are less stressful for him? By learning to interact with children who pose less of a 'threat', he may be able to start overcoming the fears which overwhelm him. I take my son into situations with 'mainstream' children as he needs to learn to deal with everyday environments but I also try to provide him with lots of downtime by himself or low stress play opportunities with other children with ASD. I see a noticeable difference in how my son copes with his friends who also have ASD (or other disabilities) and children who don't.

It can be quite difficult to gauge when my son is unwell or if he says something is 'sore' etc, what exactly is sore and how bad the problem is. This is due to his speech disorder but it is possible that it may not occur to your son (or my son) to tell you (or me) how he is feeling or he might not recognise how he is feeling. Over the last week or so, I have been letting the school know how my son has been sleeping, what his mood has been like, if he has been complaining about anything and I've also been keeping an eye on the fact that his sister is full of the cold as is my husband as it is likely that my son will also be affected by this, if not now then it is brewing! In return, the school has been letting me know how he has been there. I wouldn't worry too much right now about your son 'telling' you about how he is feeling. There are 'clues' like you say as to how he is feeling. You are being kept informed by the school and as you say, he is sleeping more than normal which is a good indicator that he is a bit under the weather. If you think in future that your son is ill it might be an idea to ask him directly if he feels unwell. When my son (and my daughter, who also can't 'tell' me how she is feeling due to her age) seems 'off' I keep a good eye on their temperature, how much they are eating, I push fluids, keep them warm and contact the doctor if I think it is necessary. There have been times that I've maybe left it a bit late as I had no idea he had a throat or an ear infection! I normally tend to give them Calpol if they are really whingey and keep a good stock of Karvol (I think the children's stuff is useless) at this time of year so that they get a decent night's sleep.

Would this work with younger children?

Filled it in but it doesn't seem particularly indepth. There was no option for anything other than official diagnosis so I left that part blank.

I think I get what you're driving at... However, they should be offering you some other help if you are considered 'high risk' in some way. When things seem very bleak, it can be very hard to see a way through - they should be helping you to clear the path in front. Thanks for the birthday wishes - it's the big 4-oh-no!!

You've maybe done some of these things so ignore if so. Some of the things that helped lessen my anxiety were cutting down on caffeinated drinks, cutting down on alcohol (though I'll be having a glass of wine tonight as it's my birthday ), deep breathing exercises and exercise in general. I try to eat reasonably well so I don't have as many problems with sugar highs and lows and I try to get a reasonable amount of sleep too. I use earplugs at night if I can't sleep and have herbal stuff to put on my pillow. I try to keep my physical problems at bay as best I can. Unfortunately, to alleviate stress at a time that I was under great strain I took up smoking again which doesn't really help (blah, blah you know the rest). I'm not saying that this will stop anyone being depressed because frankly it doesn't stop me becoming depressed but it does make things more manageable. If you can think and reason better you can make better informed decisions and less rash judgements. Anxiety can breed depression and then you are in a loop. There's also the issue of 'reactive' depression caused by your situation or a feeling of being out of control versus whether the depression is more clinical. However, if the end result is similar; ie. you feeling completely hopeless and having suicidal thoughts then your GP ought to take this very seriously. They have a duty of care towards you and if they are not recommending medication for some reason then they should be offering you some alternative option. Some GP's are very reluctant to prescribe medication these days as in the past they've been accused of handing them out like sweets. However, if they only start you off on a low dose, short term prescription then I can't see what the problem would be. Often, medication can go hand-in-hand with talking therapies etc.

What are the reasons they give you for not considering short-term medication?

Hi Metalhead When you say your doctor refuses to let you have any medication, are you talking about your GP or someone else like a Psychiatrist? If a GP, I would say change them asap so that you can speak to a more sympathetic one. I don't believe that medication is the 'answer' per se, I think that there are many other things that you can do to alleviate or at least lessen the impact of mental health difficulties. However, they have their place and the right type for you might help you to be able to get out of the place you find yourself in right now. If a Psychiatrist, it might be a bit more difficult to change to another one but not impossible. If you are in 'the system' then you may be able to access an advocacy service in your area to help you speak to your Psychiatrist about how you are feeling and why you feel that medication could help you meantime or to help you request a change of Psychiatrist. When you are in a vulnerable state, this might be a helpful avenue to go down (you can also get help to go to the GP but you may find that a local advocacy service work within prescribed limits and this is why I ask if you are in 'the system' already). A google search might be all you need to do to find one. I've been on medication which helped me get out of my 'big black hole' and I've also been an advocate and have seen the best and the worst of the mental health system. I was also on medication when I was an advocate, lol Best of Luck Lynda