Lyndalou

Perhaps it should have been made explicitly clear from the outset that this forum is mainly for parents and added to that, parents who only believe themselves to be non-autisics. It perhaps should also have been made explicitly clear that the only autistics who can contribute are those who do not share their life experience to help parents see a way forward out of the darkness and that the autistics who do contribute have proof that they are so because God forbid that any of us are intelllgent enough to put two and two together and realise that their own, at times awful experiences equate to having a spectrum condition! With regards to the programme, anyone who thinks that this society is anything other than intolerant of differences of any kind is living in cloud cuckoo land. What good does it do to bury your head in the sand and be indignant? Someone who 'likes' to say they have AS.

I've sold a moses basket and some baby bottles since my last post . I'm heading towards my first £million - £££ signs are flashing in front of my eyes

I must admit that Facebook is a bit of an obsession with me and my current way of keeping up with what's going on in my own little universe!! I know it's sad but it's also very useful...I have a lot of mums from the various places my son goes to nursery and playgroup on it, my family and various other 'hangers on'. Since I am so awful at organising myself it keeps me in the loop as to what's going on and if I need to, I can log on and remind myself of dates that things are happening! I don't like using the phone if I can help it so it's great just to keep in touch. For instance, I've just had a five min 'conversation' with my sis-in-law in the wee box that pops up and I've just sold a baby playmat on the local 'sales' group...result! (I'm getting a bit obsessed about trying to shift stuff on it too ). I've got a private 'chat' group with a group of mums re doing 'out of school' activities with the kids like going to soft play and I was added to a 'Parents' group that I dip into. Unfortunately, the friend I would count as my closest friend hardly uses it, one old friend refuses to use it so I have hardly been in contact with her and another friend I have to rely on texting because she's not interested so technically all my 'friends' on fb are not the ones I'd really like to have the most contact with but as I said before, I find it realy serves a useful purpose

Not sure if this is a random thing that has happened to me but.... Little baby boys are prone to weeing when they are getting their nappies changed....gotta be quick! My lad was 4 weeks old, bum in the air when he peed in a perfect arc right into his own open mouth - I've never seen a more surprised look on a baby!!

Went to a Wetherspoons recently on their Thursday curry night. The food is cheap and cheerful for a night out and virtually everything on the menu was marked GF.

Thanks Lynne It's nice to know that I'm not alone too! These days I feel like I walk a parallel path and I am simply 'too normal' to be recognised as autistic. What can I do? I met a lovely autistic woman recently and she has suggested to me that I 'ham things up' like not making eye contact to come over more autistic to professionals. I understand why she gave me this 'advice' but it's quite perverse that in order to be taken seriously a person would need to feign certain mannerisms or behaviours that have taken a lifetime to unlearn or are hugely diminished or one has learned to quash in public. THAT is downright odd in my mind although everyone else may completely disagree? Anyway, I kinda like myself the way I am now and hope you feel the same way about you. Lynda

What a great way of putting it. Ditto with bells on

Thanks LancsLad and Sidious for your kind comments. We're all just doing our best to live our lives the best way we can. I think that the key thing though, and for our children too, is to learn to like ourselves and recognise that we are unique human beings with something to offer the world. People live with all sorts of difficulties and they can be either something to rise above or something to succumb to. I am always so humbled when I see people with amputations for instance who raise money for charity by doing marathons or someone like Stephen Hawkings who has achieved so very much as a man unable to move or speak, a person who if looked at sitting in his wheelchair in the street would be assumed to be a shell of a person, not the brilliant thinker that he is (not to say I agree with everything he says)! I often feel sorry for myself and even sitting here watching Sport Relief I think who am I to feel sorry for myself? I hope that my son has the confidence to believe in himself like AS Warrior does when he is older. Life is not likely to be easy but I can see so many strengths in him already and I'll strive to ensure that he builds on those strengths and that he'll know he's loved and respected. If nothing else, I don't want him to waste his life worrying about what people think about him and that he'll understand that the people who matter are the people who will love him the way he is. I've spent too much of my life loathing myself and wishing I was different to the way I've been made and what has been the point in that? I have been very lucky that I've at least had people in my life who never thought of me the way I thought about myself and over time my warped view of myself has dissipated. I know this is a bit cheesy but I thought I'd quote the Whitney Houston song 'The Greatest Love of All' because the lyrics are pretty good: I believe the children are our future. Teach them well and let them lead the way. Show them all the beauty they possess inside. Give them a sense of pride to make it easier. Let the children's laughter remind us how we used to be. Everybody's searching for a hero. People need someone to look up to. I never found anyone who fulfilled my needs. A lonely place to be. So I learned to depend on me. I decided long ago, never to walk in anyone's shadow. If I fail, if I succeed, at least I'll live as I believe. No matter what they take from me. They can't take away my dignity. Because the greatest love of all is happening to me. I found the greatest love of all inside of me. The greatest love of all is easy to achieve (not really, but hey-ho) Learning to love yourself is the greatest love of all. :)

I suppose the way I view things is that although I've had (I think) quite severe difficulties over the years, my own determination to get through and improve my life plus the determination of my parents has got me to where I am today. Unfortunately, I think that 'appearances' count so much to professionals as does a very limited view by professionals (and parents, I might add) of what people with ASD can achieve if they focus on their strengths and learn to cope with the problems they have. I have always been very determined. At 7, I was determined to beat Karen in the running race at Sports Day. We practised for it in the gym hall and I was not going to let a little thing like a wall stop me from beating her so I ran right into it and smashed my glasses into my face in the process! I would never accept being told what I could and couldn't do and hated anyone thinking I was stupid so I practised at home to stand on my head for longer, to bounce balls off the walls quicker, to beat the rest of the class at spelling. I didn't like being compared to my very clumsy sister so I taught myself ways to watch that I didn't bump into furniture or stub my toes as often. After the class completely ostracised me at age 11 I decided that no-one would see me get angry again (and no-one did for many years). I decided that I would try my hardest not to show how hard my legs wobbled with the terror of bumping into the girls with the 'special powers', that if the stammer started I would stop talking, that I would plaster a smile on my face, that I would accept being bullied by my best friend at secondary because I clearly deserved everything I got and try my best not to upset her or pass a test she didn't want me to or she would give the word and her 'other friend' would do me over. Fast forward to age 25 and the realisation I had no friends because of the complete fear of letting anyone get too close, no real prospects because although I had a hard worked for degree I had no notion about what I wanted to do and always got extremely stressed in whatever job I'd been in since Art College. I had been told in one job that I 'needed to grow a backbone'. I got fired from another but was made to sit in a separate area for a week before they let me go which was utterly humiliating. At college, I'd lasted about a month on the checkouts in a supermarket but to this day I feel the humiliation of sitting there with the checkout supervisor going through my till receipts in front of a queue that stretched to the back of the shop because I lost track of what I should tap on the till when I got muddled by the man going through with 12 cabbages. I recognised I could not work with numbers. I recognised that I was unable to do a job which involved explaining technological concepts. I realised that the job I had enjoyed most to date was working in an industrial laundry because I was told what to do and just got on with it and didn't have to speak to anyone in the process. I recognised I was turning into my dad with regards to how things were with other people. I decided I didn't want to get to my dad's age and be bitter and upset about having no real friends and pretending that it didn't (and doesn't) upset me like him. I was determined that I would not continue to be called neurotic, highly strung by other people. Even though I would sit in the dark on my own and wonder what it would be like to screw my head off and put someone else's on, I learned to look serene, to be self-depreciating. So, at age 28 I saw a job in the paper. It required an Art Degree and I had one. It was a huge jump into the dark but if I had any chance of getting my own flat one day it was a jump I was willing to take. I was determined to get that job - it was my way out of sublets and even if I had to live on beans for ever I would do it. I got it. I had to work my backside off, learn all about mental health, learn to get over my hatred of letting people watch me work. I got my flat. I worked very hard at keeping the friends I made but the trick was to always look in control, always agree, never cause any friction if I could help it. I taught myself to walk with my feet pointing forward as I was fed up of mum commenting about the strange way I walked. It was pointed out to me that it was obvious what kind of mood I was in by the colours I wore so I made a point of wearin 'happier' colours. My job got harder. I got more responsibility and my job role changed. I had a mortgage and bills to pay. I was told that I went about my supervisory role in the wrong way and at the same time the bullying from other staff began. The bullying was never tackled and I had no option but to undergo a year of 'Work Counselling' to 'change my approach to my job'. Clients complained about me and I was accused of expecting too much from my staff - I was too perfectionist et al. Nevertheless, I had to redo work that customers complained about because the people I was expecting too much of didn't do the job well enough, I had to struggle to do statistics for funding while my boss sat and played patience on his computer. Over and above this I became extremely expert in hiding the extreme stress I was under. I was determined to get another job to pay my bills, to escape the hell. I studied like hell, practiced and practised for the interview for the job I went for next. I got it. I worked like hell in that job too, even though I was petrified of the girl I shared my office with. My assessor sees me now. A married woman in a nice house with a comfortable lifestyle. He has no notion of how it is possible to hide all the ######, to suppress all the anxiety. He has no notion of how much effort it has take over the years to get to this point....still terrified of getting close to people but for all the world looking confident and easy-going, for want of a better word 'normal'. I am not going to apologise for having the life I have because I've worked damn hard for it but just because I've been determined to get through school, get through Uni, learn over time that I am worth more than being called 'Stupid Girl' by my first serious boyfriend and being a leg-over for a user alcoholic among others, that I don't have the huge panic attacks like the one I had that landed me in A&E on the Millenium, that I have valid opinions and that I am actually quite intelligent even though my husband has to deal with all the finances and I can barely remember what we agreed we'd have for dinner. Determination is a good thing, an incredible force but it doesn't cancel out Aspergers.

I was told by the man who assessed me to give me an opinion as to whether or not I have AS that I have an 'autistic cognitive difference' that had clearly given me significant difficulties throughout my life and that I fulfilled having problems across the triad of impairments. However, it was his view also that I did not 'at all times' experience problems to the exent that would require a clinical diagnosis possibly by virtue of the fact that I had an 'inner strength' that had somehow protected me from the full impact of those difficulties. Personally, I think that is a complete load of old cobblers. Since when did determination count as a valid reason not to have a brain disorder?

We have now had 2 meetings of the support group for adults who have diagnosed or suspected Aspergers / HFA. We are growing slowly using a combination of advertising and word of mouth so feel free to spread the word. We are currently meeting at Goals at Bridge of Dee, Aberdeen and our next meet up will be 7.30pm on 5th April. Those currently involved are within the 20's to 40's age range and both men and women. If you'd like to get in touch please pm me. Lynda

Smug mothers and anyone with false modesty People who overtake on a corner or double white lines Sand in sandwiches at the beach My very expensive, supposedly easily manoeuvrable buggy Getting frustrated about having low frustration tolerance Hypocrites

I like these very much

Is it possible that in his OWN head he has not accomplished what he set out to do? You may think he has done something really well but does he? For example, my son has recently been writing words extremely neatly and to my mind very well on his etch-a-sketch but he has obviously himself been unhappy with what he has done. He constantly wipes out the letters and redoes them but each successive attempt is still not good enough and he is ending up throwing the etch-a-sketch across the room and if he has worked himself up enough then he gets very upset and may cry, scream or be aggressive towards his sister. I may be completely off the mark but it was what came into my head when I read your post.

<'> ><

oooh! I'd definitely eat those...and is it butter icing? YumYum

I've only just skimmed the above so forgive me if I repeat anything... I have come to the conclusion that art is entirely subjective. I have no time at all for the type of art world thinking that exists today which says that the only art of 'value' is that which sells for ridiculous sums and people kill for. Going to Art College put me completely off 'art' because what was taught was that you could not be a serious 'artist' unless you walked, talked and breathed it, hung around in the 'right' art-farty circles and brown-nosed the 'right' people. In my final year I was given a dressing down by one of my tutors because I mentioned I was considering art therapy as a career and since I left 18 yrs ago I still see the same stale repetitive work produced by the tutors I had back then described as 'innovative', 'sensitive', 'forward-thinking' and all that blah-de-blah South Bank Show malarkey. My dissertation was about North American Folk Art. My tutors couldn't have cared less about my subject matter and I got no assistance at all because it wasn't about 'real' art like Expressionism or some-such. It probably didn't help that it was a paper on how American patriotism was expressed in Folk Art too, lol. I worked as a Workshop Co-ordinator for a charity for a while producing paper products for sale a number of years ago. Although it was very idealistic to think that all that was produced was going to be of saleable standard (which was the ultimate goal) along the way the people I worked with learned new skills and many had some very good ideas and abilities. It was good to be part of helping people express themselves in ways they hadn't thought of doing so before and to feel good about producing something themselves from scratch.

I don't tend to quote metaphors aloud most of the time. In fact, I know how annoying it can be when people drop them into conversation (or at least I don't think I say them aloud too much - maybe I do! ) so I make a point of using another way of explaining my point of view. Things like treating other people with respect may be that when I am tempted to retort with a sarcastic comment when someone is rude or sarcastic to me I think 'How would I like to be treated?' and then I may just ignore what has been said to me because the comment's intent is to goad or I may simply ask why the person has said what they have said. That little quote is just there, at the back of my mind, reminding me that I need to try to be a respectful (but not treated like a doormat) person in the situation. Incidentally, it's taken me a long time to get to the point where I am assertive enough to query people's intentions but I believe I have the right to do it now. I'm not saying that I don't at times fire a sarcastic comment back or am not at times rude but I try not to be because my underlying belief is that if people treat each other well then it makes for a better world!

Hi Dekra Has your request for assessment been refused? That's what it sounds like you're saying I'm starting the fight again soon for an assessment. It is such a cop out to say that AS is not a disability like more profound ASD. That may be the case in the sense that many of us are married / in relationships and have kids who to all intents and purposes do not require 'support' in the strictest sense. However, I think it is very short-sighted of GP's and mental health services not to realise that just getting some 'help' in terms of adjustment in the workplace and (like you) some help while studying will help those with AS cope better and therefore experience less stress, ultimately relieving pressure on mental health services from all of us needing psychiatrists, therapists and any other ists there are due to getting ridiculously anxious and depressed..... I don't know about you but just knowing has meant that I have already learned a great deal about what has caused my problems all these years. So Good Luck and I really hope you get somewhere soon! BTW, I stumbled across a great article the other day which I intend to use because virtually everything that I brought up in therapy is covered in it! It is the (long) foreward to Liane Holliday Willey's new book 'Safety Skills for Asperger Women - How to save a perfectly good female life', written by Tony Attwood and it describes me to a T! It might just describe you too? Lynda

I've been thinking about this quite a bit and I've decided that a number of the little old 'quotes' and 'sayings' which were instilled into me as a child have had a very positive influence on my life. Amongst them are biblical quotes (because of my christian upbringing / early beliefs) but many are old-fashioned sayings that help me remember everyday things and hold me true to my own moral compass. I gave up my christian faith many years ago but I've never lost my trust in the particular (I suppose many would say idealist) christian viewpoint of how to relate to other people, even though I recognise the hypocrisy in many people and don't trust anyone bar my family. Among the sayings / quotes I refer to regularly are: Treat others as you would have them treat you Be strong and very courageous (my bible fell open to this when I asked for a 'sign' for help when I was very depressed at 17) Cut your cloth according to your means A stitch in time saves nine Make hay while the sun shines (I make a lot of 'hay' when I'm not depressed ) Slow and steady wins the race Wants don't get If you don't ask you don't get The grass is always greener on the other side I before E, except after C 30 Days hath September, April, June and November. All the rest have 31 except February all alone, which has 28 days clear except 29 in each Leap year If a job's worth doing, it's worth doing well If at first you don't succeed, try try again Lastly...my own saying. Again, this 'came to me' when I was at one of my lowest ebbs as a teenager and really needed to know a way forward because I never thought I would amount to anything. And that was 'Don't limit your horizons' and that has always been something I have referred to when I can't see a way forward I know there are loads more but I can't think of them at the moment! They just pop into my head when they are required most of the time. It would be interesting to know if anyone else has this method of recognising their own personal boundaries and parameters. Lynda

Hi Dekra If it helps at all, Struan mostly copes well with airports and going on a plane! He flew for the first time at the age of 12 months and we were probably very lucky on that flight that it was only an hour (to London) and there were spare seats so he got his own seat and got some attention from flight attendants For the differences in air pressure on take off and landing we had him drinking out of a spouted cup and it seemed to do the trick too. He has been on 3 flights since to and from London and the most difficult flight was when he was still not quie old enough to have his own seat and both hubby and I were crammed in on a full flight with Stru on first my knee then dad's knee and so it went on. He didn't cope very well because it was hot and the air conditioning was loud and he pretty much had to stare at the seat in front. Being confined (his favourite thing ) and bored and coping with a lot of noise, being encouraged not to kick the seat in front and coming down with a cold are not a good combination! Our last trip was very good considering returning home was the day that BA cancelled 80% of their flights due to the 'arctic' weather in London . The main difficulty we have is with all the waiting and there is a lot of waiting and queuing at the airport. Therefore, we always try to travel as light as possible including having baby things at the other end (we visit relatives) and an easily collapsible buggy. Stru also likes sitting on the luggage cart (you have to be very careful with that!!). We check in ahead of time and while we wait we try to stay in not-too-busy areas and we have regular snacks and drinks. Waiting at Heathrow this last time involved having a little 'cordoned off' area overlooking the runway where Stru watched the planes taxiing with his dad and was able to play with his etch-a-sketch. Stru also went on regular jaunts to examine TV's and information screens and I left him to it so long as he wasn't standing right beside people and staring into their faces or over their shoulders at their newspapers!! Stru struggled a bit when we were pre-boarded and then un-boarded again - we had to wait in an area with nothing much to look at and for half an hour (twice) we had to stop him playing on the escalators, something he is intrigued by... On the plane itself, it was packed because they had combined two planes into one. I would like to say that it wasn't at all stressful but the main thing is really just paying constant attention to what is going on, the noises and sensations and monitoring the stress and the behaviour (of everyone). I was absolutely knackered but we survived Good Luck when it happens...Lynda

Hi Dekra We are probably in a similar situation to you to a certain extent. Struan's langauge continues to improve but it would in no way be considered on a par with his peers. He uses a lot of learned and repeated phrases and echolia and there is a certain amount of spontaneous speech mixed in. He speaks a lot at home and to adults outside the home if they start the conversation but with other children the only 'communication' he uses is smiling and laughter, ranging from nervous giggling to belly laughing . At his special needs nursery I have spoken to the SALT and nursery teacher about his language development. The emphasis on improvement (in terms of timeframe) is probably different to the conversations you have had as Struan is going to attend primary one at the special needs school the nursery he attends is part of. They use the Derbyshire Language Scheme within the nursery. On a day-to-day basis they use it in the nursery and then it is reinforced by the SALT when she works with him. I don't know very much about the 'scales' involved to determine the level of ability of the child but I like the sequential way the scheme is taught. I suppose I view it as the 'building blocks' that I can build on at home. I haven't as yet asked for more information about how to use the techniques at home but like you, the last time I asked he was still being 'assessed'. However, I am of the view since my discussion with the SALT that they believe his level of understanding is lower than I believe it is. I am not too worried about this at the moment because I can see a steady improvement in his language abilities at home and I don't think he communicates as effectively outside the home. Every day at home we repeat words and sentences he says back to him, particularly if the sentence structure is incorrect or words are unclear, we use 'mirroring', we make a point of using 'please', 'thankyou', etc, we talk back in the first person, ie, when he says 'Throw ball to Struan' we say 'YOU say, throw the ball to ME' and he says it back. I know a lot of this is 'rote' learning but I believe strongly that he has benefitted immensely from this...yes, it could be classed as 'learned phrases' but I think that if these appropriate phrases become ingrained at an early age then it's all for the good! My little boy has always loved music too so we sing a lot together and I think this a great way of communicating and I'm sure he's learned a lot of language this way too. I don't know what 'level' of ability a child would need to be to communicate effectively in a mainstream environment but I know that Struan is a long way off from that but who knows how much more it will be improved by August. Does Finn have to go to school this year or could you defer? - I think I remember you asking something about this before. If Struan went into mainstream this August, he'd still be one of the youngest in the year so even if he weren't going into his special needs school primary one this year I would probably have deferred him and kept him in nursery. Although he has a speech disorder though, he's also academically on and above par and holding him back would probably not have been helpful with regard to his other skills and development! I hope that you manage to get the bath situation sorted out too. I'm sure it would make like so much easier for all of you. Struan has difficulty with getting water on his head and we have always bathed him so I empathise with you. The night-time routine goes so much more smoothly if it's enjoyable and relaxing! Lynda

Hi Bonbons I have no problem in recommending 'Strategies for Building Successful Relationships with People on the Autism Spectrum' by Brian R. King. I've read this through and am now dipping in and out of it to reinforce and remember the strategies and tips which are contained in it. I think it's a practical book, written by someone on the spectrum and about living with and relating to children and teenagers with spectrum disorders (his 3 children and wife also have ASD). The author puts forward the strategies he feels are helpful for kids at home and at school, using as examples situations he has had with his own children and other children he has worked with in a professional capacity. I give it a big thumbs up Lynda

Is that not advertising the 2009 conference?

What a brilliant response LancsLad and totally agree! I did all sorts of 'odd' things when I was a kid but I was left to it a lot of the time and it probably kept my stress levels down. One thing I still do is sniff my fingertips...I know, very strange but whereas I did it very obviously as a child it has changed over time (having had it pointed out to me that it was strange) to me touching the bottom of my nose and just making it look like I'm scratching it etc... I also frequently played with balls, mostly juggling against walls. This was at the time that all kinds of ball games and skip rope were in vogue. I 'tested' myself to go faster and do longer sequences of bouncing and this also applied to standing on my head or doing handstands, toe-pointing, splits and all sorts of jumping, skipping and hopping. I still indulge in a little bit of toe-pointing and arabesques when I feel the urge but am not fit enough now to do anything else... I would say as long as it is 'safe' and it helps him cope, let him do it! My little boy asks for 'round and rounds' when I have to spin round in circles with him and tickling is a good lever for encouraging him to do things he doesn't want to do Bouncing on the trampoline is a good stress reliever too! xx