llisa32 Report post Posted April 30, 2007 Hi, I have spent a few hours reading all the posts today and wonder if anyone has some advice for me? My son is currently 7 years old with an above average IQ, he's far advanced with his speech but was diagnosed with dyslexia at 5 as it was hugely obvious he had a problem with his reading. Turned out his speech was a couple of years in advance but his reading was a year or so behind his age. myself and my family have always thought my son had got his 'quirks', . He's not sat stil since he could run, practically every week in nursery saw a new bruise from launching into/off a wall/chair etc. He has no sense of real danger and is still useless at crossing roads - forgetting to stop and look. He has always refused to wear jeans - too hard, will only wear certain jumpers/t.shirts etc (have to be soft), has fav fleece blankets for bed. At home will onyl use certain cutlery to eat with and regards food he only likes/will eat certain stuff. He evn has food he will only eat at 'nanny's, or 'daddy's. If we don't have the right brand/flavour he will refuse to eat. He collects any small toys like pokemans etc and knows the names of everyone created - same with powerrangers. He has certain toys that must go in his pocket each day, or in his bed each night. He hates change and would gladly go on the same hol to same place every year. He dislikes team games, and struggles to maintain friendships as he doens't seem to get the 'give and take' and I think prob bores the pants off some children he talks to He cannot stand anysort of mickey taking etc, and if someone accidently knocks into him he assumes it was done on purpose. - the flip side of that is his liking for 'you've been framed' - the slapstick style has him in stiches laughing and he will watch the same video over and over. If he gets excited he will be like a toddler, it's hard to describe but he sorts of screws his fists up and stands on tip toes looking like an excited toddler (that make sense?) Anyways......I'm rambling and heres why.....my gut instinct is that something is not quite 'right' and that he may have mild aspergers...however, his school love him to bits and because accademically he's doing fine they see no problem and have questioned whether seeking a disgnosis and getting a 'label' would be a good move or not. It seems I am being disouraged at the moment from seeking answers/diagnosis becasue some people feel that to get a diagnosis would give him a label with s stigma - this attitude really winds me up. But is that what actually happens? What should I do - do you think my gut instinct is right, or as he's doing fine at school (apart from team games), just watch and wait. I really doon't know now whether to proceed with seeking diagnosis or leave things be Any help/advice very gratefully accepted Quote Share this post Link to post Share on other sites
lynda4 Report post Posted April 30, 2007 Hi llisa I hope you get lots of replies as this is a tricky one and it would be helpful for you to have a few opinions on this, so you can make your mind up. Here's my view on it - They say that everyone has some autistic traits, absolutely everyone, so there isn't really a clear-cut point where you can say one person is 'normal' and another has an autistic spectrum disorder. You could think of it like a line with a non autistic person, who has no signs of an ASD that your average Joe could see, at one end and a severely affected person at the other end, maybe one who has no speech even as an adult and will always be in some sort of carehome. In between lies all the rest of us. I certainly have some autistic traits, myself and some caused a few difficulties at school, so,e still do now but they are minimal and I managed through life and school without extra support. There are loads of other people like me, with one foot in the camp but no diagnosis, several of my friends are like that. Given the difficulty of not having a clearcut diagnostic test, like a bloodtest for ASDs and everyone having some traits, I once asked a professional at what point then do you get a diagnosis? I was told that its usually when you can't get through life, accessing all the things you need to, without extra help. He said some people go for a diagnosis when they're quite old and he knew of someone in their 80s who was diagnosed. I asked why was it necessary at that age and he said that they'd always wondered why they did this or that, why they had this particular difficulty or behaviour trait and just wanted to know. That person was very pleased to have a diagnosis and therefore an answer. Other reasons for diagnosis, could be because of difficulties at school, where its causing anxiety and the child isn't reaching his/her full poential and needs some extra help put in place. I think this is one of the main reasons why a diagnosis is necessary. Sometimes its helpful for parents to know exactly why he/she does certain things that are really anti-social or wind them up. Sometimes if the parents get the diagnosis, they'll then understand their child better, be able to tell when bad behaviour is deliberate and when not, so this can help with discipline. You don't want to punish a child for something he can't help, equally you don't want to let him off when he needs to learn right from wrong. When it comes to learning, apart from school, children with an ASD often learn things in a different way and so if you know that, you'll be able to tailor your parenting to take that into account. I had to teach ds2 about emotions and facial expressions and things like that,that other kids pick up naturally. I had to teach him, like you'd teach another child their tables. If I hadn't known he had an ASD, I might not have realised some of the things he finds difficult to pick up and neeeds to be actively taught, or re-taught again and again. If behaviour is an issue, it helps to have a diagnosis, so you can tell people why your child is doing whatever he's doing and hopefully they'll understand and make allowances. Its helpful to have a diagnosis so you can tell friends and family members, who think he's normal and your parenting is to blame. You could visit the doctor and ask that he doesn't have to sit and wait for his appointment but can always go straight in at the time he should - same with a hospital or dentist. There are financial benefits of course, but he would have to be more than borderline to get those. They would help pay for any extra expenses he has as a result of his disorder, like extra specialist tuition, or even breakages if he has behavioural problems! When all's said and done, most people don't want a diagnosis unless they really need one. If they really need one, the diagnosis often comes as a relief because it helps them access extra support. I think there might be some stigma associated with a 'label' and we have encountered it just mildly a couple of times, but this is insignificant compared to the benefits of a diagnosis when the need is great. It sounds like your son is happy in himself. Has some educational problems but not behavioural, more to do with his dyslexia. He would need a diagnosis and extra support for that and it would make a big difference to him. He will have extra understanding from the teachers, may be entitled to a laptop to do his work in class if he's struggling, could get special computer programmes to help him, maybe extra tuition and should get extra time in formal exams. From what you say, it seems that his other differences are small and aren't affecting him in a negative way. He's well loved, doing ok at school and home and those around him just see him as quirky, a little eccentric perhaps, which can be very lovable and endearing. This may change as he gets older, his differences might subside to a large extent or become more obvious and troublesome and then it would be clearer that you need extra help and a diagnosis. The only thing I would worry about at the moment is the sense of danger thing, you'd have to make sure that everyone who is caring for him knows the extent of this and watches him accordingly. It sounds to me like he definitely does have some autistic traits, if pushed I'd say Aspergers but it also sounds as if its not causing him any real problems at the moment, so if it was me, I'd be inclined to let it lie, watch and see. If he grows out of most of the traits a diagnosis won't have been necessary. If they increase as he gets older, it probably will. If he gets to around 12 and hasn't needed a diagnosis so far, you could leave it up to him to decide what he wants to do about it. My son with AD/HD and some traits was diagnosed at around 11 but has since refused to mentally accept the diagnosis and wouldn't take any extra help at school. This meant he struggled through school but has stuck to his guns that he didn't want it and has now come through a very difficult patch of adolescence and is doing very well. He's learned to adapt, as our kids often do to some extent and would rather have the downsides of not having a label, for the sake of his self esteem. DS2 and dd have both fully accepted their own diagnoses, will happily talk about it to anyone and both have had extra help at school which has been great for them. They don't see it as a bad thing, more a difference among people, we're all different and that just happens to be the way they are different. So all three have been diagnosed but ds3 has dropped his and managed without it, that's his choice and I think, for him the right one. I would suggest you keep on reading posts and know inside your mind that he does have some traits, maybe a little more than some other people but not severe. As long as you are aware, you can adapt your parenting, with tips and info from sites like this and books if you choose to read them. It will all help you to know and understand him better, where he's coming from and help you keep him happy and safe. If later on, you decide to go for a diagnosis, you'll already have a head start by knowing so much about ASDs and how they relate to your son. That's my take on it, I'll be interested to read other people's. Quote Share this post Link to post Share on other sites
BusyLizzie100 Report post Posted April 30, 2007 There's not much I can add to Lynda4's brilliant reply! My eldest (DS1) is nine and was dx with Asperger's at 7, mainly because we had become so much more aware of autism through the diagnosis of his younger son with ASD. DS1 is very bright and is achieving well in many ways academically at school, although his handwriting is still illegible and he is very unco-ordinated. The main advantage we have found to getting a dx is that, as Lynda says, it points us in the right direction- it helps us to understand him and his unique approach to things. For the whole of Keystage 1 school could not see any problem, and it was only when he went into Year 3 that things started to go pear-shaped. His anxiety and stress just became so much more apparent, and he is years behind emotionally. He struggles to identify how he is feeling and this, along with his difficulties with social understanding, cause him most problems. His difficulties have become more obvious as he gets older, as his peers continue to develop along 'typical' routes that he is unable to follow. I'm not looking forward to the transition to secondary school as I feel he will struggle even more. After a lot of pressure from us, he now gets 4 hours of support a week, although I'm not convinced that school are using them very well. But they are much more aware now and he has access to an Alphasmart, which he is getting used to. With the dx is able to access the autism outreach service, which should be a good thing - except that the particular person responsible for our area is rubbish! One last thing - in my opinion, there is no such thing as 'mild' Asperger's or 'mild' autism. You either have it or you don't. The differences occur depending on how much difficulty you have with things and in coping with life, as Lynda says. When DS1 and DS2 are having a tough time or going through a bad phase, both can display more 'autistic behaviour'. For example, DS2 is struggling badly at school at the moment because the gap between him and his peers has grown too wide and he has significant speech and language problems, so his behaviour has deteriorated and he is far more aggressive now than he was. Hopefully, with the right support, which in his case should be a change of school to a special setting, his needs will be better met and his behaviour will improve. If your son appears happy and is not experiencing difficulty, it could be that his needs are being adequately met. Your son may or may not be on the spectrum, and only you can decide whether to seek a dx or not. It is well documented, however, that children who appear to have autism (and by that I include Asperger's) or have two but not three of the triad of impairments, so don't 'qualify' for a 'proper' diagnosis, still benefit from being treated as though they have autism or Asperger's. Hope that helps, Llisa. It can be a very confusing time. Remember, you know your son best. All the best, Lizzie x <'> Quote Share this post Link to post Share on other sites
badonkadonk Report post Posted April 30, 2007 (edited) Hi Lisa, First off I think it's great that you're at least asking questions regarding your son. However, being Aspergers myself, I have to say that reading your posts and the replies that followed threw up so many red flags and flares for me that I couldn't not post a reply this time. Usually if things bother me that people on here write I can dismiss them and accept the fact that there are a lot of people on here that are new to ASDs and are not approaching the issue with the same information that I am and so can ignore the little things that bother me and just move on happy at least that they are taking steps to find out more. It's not that I can't do that for you or that your post is the worst post I've ever read but I really want to help you try and understand all the other reasons why you should seek a diagnosis other than the ones you have come up with because to put it bluntly, I think you're kinda missing out on the bigger picture here. Please don't take this as an attack, I know I write this alot in my posts and it's not me making excuses for then launching a veiled attack at people but I know that people can get a bit irked when some idiot comes along and starts saying 'don't do that, do this' and I just like to get the point across first that I'm only here to help myself and my family have always thought my son had got his 'quirks', . He's not sat stil since he could run, practically every week in nursery saw a new bruise from launching into/off a wall/chair etc. He has no sense of real danger and is still useless at crossing roads - forgetting to stop and look. He has always refused to wear jeans - too hard, will only wear certain jumpers/t.shirts etc (have to be soft), has fav fleece blankets for bed. At home will onyl use certain cutlery to eat with and regards food he only likes/will eat certain stuff. He evn has food he will only eat at 'nanny's, or 'daddy's. If we don't have the right brand/flavour he will refuse to eat. He collects any small toys like pokemans etc and knows the names of everyone created - same with powerrangers. He has certain toys that must go in his pocket each day, or in his bed each night. He hates change and would gladly go on the same hol to same place every year. He dislikes team games, and struggles to maintain friendships as he doens't seem to get the 'give and take' and I think prob bores the pants off some children he talks to He cannot stand anysort of mickey taking etc, and if someone accidently knocks into him he assumes it was done on purpose. - the flip side of that is his liking for 'you've been framed' - the slapstick style has him in stiches laughing and he will watch the same video over and over. If he gets excited he will be like a toddler, it's hard to describe but he sorts of screws his fists up and stands on tip toes looking like an excited toddler (that make sense?) It seems to me here that far from 'having' 'mild Aspergers' your son is actually displaying at lot of the personality traits that make up those first listed by Hans Asperger. I can't say he's Aspergers, of course not, but the way in which he lives his life seems similar to me to that of others who are also Aspergers/ASD. The way I see it the word Aspergers (ignoring the whole stupid Syndrome thing for a second) refers to the guy who first created this list of traits that can be common in people who are Aspergers. This doesn't mean that these 'differences' are found in every person who is Aspergers but that they are common to those who are and not as common to those who are non-Aspergers or Neurotypical. It's a hard one to explain because in a lot of ways I'm not so different to you or the guy who lives next door to me or my mum or anyone else who is Neurotypical and even those 'differences' that I do have aren't so radical and extreme when you compare them to Neurotypical behaviour or thinking. I like to do things in a routine and I don't get jokes, the difference between these preferences and liking to do things randomly and being able to get jokes aren't all that hard to grasp because it's essentially human behaviour or thinking that's just a bit different....it's not like I walk around on all fours and talk in numbers. I know you're probably thinking, what on earth are you on about? But what I'm trying to say is too often people dismiss those around them as couldn't possibly being Aspergers/ASD because they are not 'abnormal' (for want of a much, much better term) enough and so they get 'oh they're just different' or the whole 'mild' thing comes into play. Because it is something that most people are not aware of or understand I think the presumption is that these people who are Aspergers must be so totally different to Neurotypicals and in many, many respects it's just not the case. Looking at me and talking to me (depending on the situation) you would never know that I do/think differently to you but when you take all the little things that I do, do differently and all the ways in which I do think differently then you can see that it's only when you address these things on a whole that the big difference between Neuros and Aspies becomes clear. I hope this makes sense. So I guess that deals with you referring to 'mild Aspergers' but I'd just like to pick up on a couple of other things. You refer to knowing that your son is "not quite 'right'" and I know that you put that term in indents but regardless it helps if you can approach him being different as positively as possible. There is nothing 'wrong' with me and I certainly do not suffer...I'm just different. Just different and there is absolutely nothing wrong with describing myself as being just different. I believe 100% that I was born being me and that it boils down to me being wired differently. I know that it can sound flippant especially when these little 'differences' can make coping with life and living in a NT world incredibly hard and frustrating at times but mostly I struggle to live through life just as anyone else does. I just tend to struggle with different things and in different ways to most NTs is all. When it comes to seeking a diagnosis I am 100% behind it. Yes a lot of people do worry abouting getting labelled 'with a stigma' and these fears have popped into my head at times and tend to reappear whenever my diagnosis is treated/received negatively by others. BUT, their reaction is the negative, not my diagnosis. For me my diagnosis (aged 22) finally confirmed that I wasn't going mentally insane, that there wasn't (and still isn't) anything wrong with my mental health. It also meant that I could finally begin to piece the fragmented jigsaw puzzles, that I have always carried around in my head, together at last. Now I get it, now I know why walking around a Supermarket can be the most terrifying and stressful experience that I will probably ever come across. Now I know that I'm not a bad person for not being able to tolerate the noises that other people make when they eat. As much as it can lead to negative reactions from an ignorant society it has so many more positive impacts. Now I can say to people, look I'm not being rude when I don't look you in the eye and it's not your fault why I don't want to talk about the weather. All my life so far I have been treated as a miserable, surly ignorant trouble maker with a bad attitude and lack of respect. I mean so many parents worry about the label of Aspergers of being a negative impact on their child's life...are they really so ignorant as to presume that a non-diagnosis will be any more positive? I understand both sides of the argument but the one thing that so many people forget when they discuss this on here is the most important point of all......your child.....do they not deserve to understand themselves just because mom and dad worry how they are going to explain this one to their friends? Do they really need to spend their whole lives thinking they are wrong and a bad person for not being able to do things the same way as 'most' other people? Should they not get a shot at understanding their differences no matter how long it might take them to process the information you're giving them and turn it into a positive? Yeah it probably would be tough to begin with and I'm sure a lot of kids would reject the notion of 'being different' but the more socialising and living in the 'real world' come into play as they move out of education the more difficulties they are going to face if they do not at least understand that they are different for a reason. So what if academically they are doing fine? Since when has Aspergers been a learning disability? It's not. Yeah sure some kids who are ASD and Aspergers can have added learning difficulties but you shouldn't dismiss a diagnosis just because your kid is learning ok. With Aspergers the ability to learn things is pretty much a given considering that we commonly have an average or above average intelligence. The fact that your child is not coping so well when he's not learning should be the pressing issue here and even if an official diagnosis is not pursued you should at least give some serious time to investigating ways to better understand your child and teach them effective coping mechanisms that they can use in future. I know that teaching coping mechanisms probably sounds really daunting and scary at this point but it really isn't, it refers to things that can be quite simple such as wearing sunglasses and ear plugs/using an mp3 player when out shopping as it lessens the chances of sensory overloading. Again I'm not having a go and recognise that this is probably more the school's viewpoint than your own but seriously just because he appears to be coping shouldn't mean that something shouldn't be done. Why wait until your child is unable to cope with life and is upset and acting out his frustrations and anger in a negative way before you take steps to give him a better understanding of himself? It just doesn't make any sense. One last thing - in my opinion, there is no such thing as 'mild' Asperger's or 'mild' autism. You either have it or you don't. The differences occur depending on how much difficulty you have with things and in coping with life, as Lynda says. When DS1 and DS2 are having a tough time or going through a bad phase, both can display more 'autistic behaviour'. For example, DS2 is struggling badly at school at the moment because the gap between him and his peers has grown too wide and he has significant speech and language problems, so his behaviour has deteriorated and he is far more aggressive now than he was. Hopefully, with the right support, which in his case should be a change of school to a special setting, his needs will be better met and his behaviour will improve. If your son appears happy and is not experiencing difficulty, it could be that his needs are being adequately met. Your son may or may not be on the spectrum, and only you can decide whether to seek a dx or not. It is well documented, however, that children who appear to have autism (and by that I include Asperger's) or have two but not three of the triad of impairments, so don't 'qualify' for a 'proper' diagnosis, still benefit from being treated as though they have autism or Asperger's. Lizzie, just as I mentioned above, the same applies here, I'm not having a go, just trying to help but there are things you have put here which I really disagree with as someone who is Aspergers. 'You either have it or you don't'....I recognise what you're trying to say and agree fully with the no such thing as 'mild' Aspergers but I'd just like to put my point of view across and that is that I don't 'have' anything. This is just how I feel. I don't have something, when I walk around I don't have Aspergers sitting in my pocket. I don't have a lump in my head that needs taking away or that even could be taken away. By referring to Aspergers as being something I have I immediately begin to feel more negatively about it because I guess my head thinks that if you have something you could technically take it away. I would never seek a cure or anything like that so I guess in some respects it shouldn't bother me but I just find it sits easier with me and it is easier for other people to understand if I just say that Aspergers is part of me, just like my freckles, freakily huge big toes and green eyes. I am Emily first, someone who is Aspergers second just as Aspergers doesn't explain who I am, but it forms quite a large part of the definition of me. Again I disagree with you when you say the differences in those who are Aspergers/Autism occur based on how difficult they find life/coping. I don't think you can measure the 'level' of someone's Aspergers/Autism based on their ability to live positively and happily in an NT world. I seemingly 'cope' a lot better on the surface than those who are Aspergers but have more noticeable communication difficulties. This doesn't mean they are 'more' Aspergic than me as my senses, I have found out, are a lot more sensitive than others who are Aspergers. I think you also have to look at how much the person is aware that they are Aspergers and what coping mechanisms they are putting into place. You could have a kid who has quite big differences to that of NTs but who is fully AS aware and is employing the right strategies and approaches to life that mean that negative feelings/frustrations don't crop up so much and so what NTs perceive as being negative behaviour/thinking isn't as likely to be seen is that person. So when you say your sons display more 'autistic behaviour' when they are going through rough patches it makes me feel kinda sad for them that you think of Autistic behaviour as them getting their stress/anxiety/frustrations out in a negative way (or way that isn't the best for the kids emotional health). Just because at times they act happy and positive and can display 'good' behaviour, it doesn't make them any less Autistic, it just means that at that moment in time they have less difficulties to face and are able to 'cope' better. In pretty much the same way that when NT people go through rough patches, like problems at work, problems with relationships, their moods can change and their ability to 'cope' with life can change. I know that this is essentially what you go on to say in your post but the difference is that I would see their behaviour deteoriating or their ability to cope deteoriating as a result of circumstance and just 'behaviour' rather than them being 'more Autistic'. With the right support and setting you're right your kids will 'cope' better/be happier but it won't make them display any less 'Autistic behaviour' just less negative behaviour. I hope that makes sense and you can see the difference between what I'm saying and what you're saying. I hope you see what I'm saying as me trying to help and give some advice. I do find it difficult to get into words what I want to say and more often than not what I say does tend to get people's backs up but my intentions are nothing but good I promise I hope at least that having an Aspie point of view helps. Emily xxx Edited April 30, 2007 by badonkadonk Quote Share this post Link to post Share on other sites
Mumble Report post Posted April 30, 2007 Emily - Wow . Sorry, I know you don't like the praise thing, but tough Being Aspergic is unrelated to intellect and/or academic achievement; but suffering in the classroom because you are Aspergic and your reactions are misunderstood is. I have a pair of blue shoes, I have a hole in my tooth, and I have (currently) a cold, but I am Aspergers. It is as much a part of my identity as are the 'facts' that I am female, 7/8 English etc. As to the 'mild' aspect - I can see how this is used as a defence mechanism given some of the social stereotypes around autism, but it is fundamentally flawed. Given that Aspergers describes a different type of thinking (as Emily describes well), mild doesn't make sense - as an analogy (and I certainly do not mean to offend anyone here), you wouldn't refer to someone (I don't think) as mildly gay. To know that you are different, and to go through your school years and early adulthood knowing that you are different; that things that other people find enjoyable are, at the best, illogical and at the worst, painful, has to be worse than any potential misunderstandings related to a label. I can now (I was diagnosed 2 1/2 months ago at the age of 27) work backwards and explain some difficulties I have experienced to others, but more importantly to myself. I can now think positively about my positives and work around my weaknesses, rather than thinking that there is something terribly wrong with me. I found out at diagnosis that my mum and schools had had concern about me since the age of 2 1/2, but nothing was done. I understand that there were particular reasons for this, but I cannot forgive the decision not to have my difficulties investigated and to keep this from me. Without my diagnosis, this insight, and the understanding I now have from my university supervisor, would not have been possible. I would still be beating myself up over what I self-labelled as my 'stupidities'. Quote Share this post Link to post Share on other sites
BusyLizzie100 Report post Posted April 30, 2007 (edited) Badonkadonk, I'm feeling pretty much under fire from all areas these days so I'm just going to bow out here. Heaven knows, I was only trying to help. For the record, I love my sons very much and I'm doing every thing I can to support them. Edited April 30, 2007 by BusyLizzie100 Quote Share this post Link to post Share on other sites
mrs fussy Report post Posted April 30, 2007 So what if academically they are doing fine? Since when has Aspergers been a learning disability? It's not. Yeah sure some kids who are ASD and Aspergers can have added learning difficulties but you shouldn't dismiss a diagnosis just because your kid is learning ok. With Aspergers the ability to learn things is pretty much a given considering that we commonly have an average or above average intelligence. The fact that your child is not coping so well when he's not learning should be the pressing issue here and even if an official diagnosis is not pursued you should at least give some serious time to investigating ways to better understand your child and teach them effective coping mechanisms that they can use in future. I know that teaching coping mechanisms probably sounds really daunting and scary at this point but it really isn't, it refers to things that can be quite simple such as wearing sunglasses and ear plugs/using an mp3 player when out shopping as it lessens the chances of sensory overloading. Again I'm not having a go and recognise that this is probably more the school's viewpoint than your own but seriously just because he appears to be coping shouldn't mean that something shouldn't be done. Why wait until your child is unable to cope with life and is upset and acting out his frustrations and anger in a negative way before you take steps to give him a better understanding of himself? It just doesn't make any sense. Lizzie, just as I mentioned above, the same applies here, I'm not having a go, just trying to help but there are things you have put here which I really disagree with as someone who is Aspergers. Hi Id like to come in on this if i may, firstly id like to explain that I have a 7yr old boy that is presenting with Aspergers. We are currently in the process of seeking a formal diagnosis for him, this is I must add is a long and frustrating process. As you say badonkadonk what if they are academically doing fine?, my son was and still is, but at the begining of March was in Crisis due to him not being able to cope with the social demands of school, and from their (school)and my own inability to understand how to help him deal with this.All that was ever said to me was that "oh hes bright hell overcome it" for 3 years!!!.It was only when it was suggested to me that this behaviour he was displaying may be aspergers (by a very expierienced teacher) that i actually stopped blaming him for it(i am ashamed to say).I and my hubby have since attended courses and read lots on ASD to get ourselves informed so that we can now hopefully help him the best we can, and try to help him also understand. Basically what i am trying to say is that i think if YOU think that your child may have ASD iPersonally would seek a diagnosis dont wait for it all to go wrong because when it does its not a pretty sight and without a diagnosis the heip is a long time coming as we have found, at least if you already have a diagnosis accesseing help will not be a problem.We are now in a situation where we are probably going to be waiting 18mnths before our son receives the help he needs. Sorry i know i ramble but i hope you can understand what im trying to say. Badonkadonk Iagree with absoloutly everything you have written you talk a lot of sense.BTW I am convinced that i too have aspergers since reading so much information about it and makes me understand certain things about myself. Thank Mrs Fussy. http://www.asd-forum.org.uk/forum/style_im...icons/icon9.gif http://www.asd-forum.org.uk/forum/style_im...icons/icon9.gif Quote Share this post Link to post Share on other sites
bid Report post Posted April 30, 2007 Please don't feel like that, Lizzie...your perspective as a parent is completely valid, and your support for other people here is really appreciated. Bid <'> Quote Share this post Link to post Share on other sites
pearl Report post Posted April 30, 2007 Wow, I have nothing to add to all these thoughtful replies, except - welcome to the forum llisa <'> I hope you find some answers here. Your boy sounds lovely. Quote Share this post Link to post Share on other sites
mum22boys Report post Posted April 30, 2007 Hi and welcome <'> Look i'm certainly not going to go too in depth here because others have far more worthy things to write! I like a lot on this forum have been 'in your shoes' (I hope no one takes that literally, I do think before I speak when talking to M, really!!!). I think go with your instinct, you are his mother, you know him best. I can't say, yes he has AS or no he doesn't. It seems to me you are worried about labelling him. From experience I have realised to worry about getting M labelled would have been selfish, I would have denied him the extra help and support he desperately needs. I read somewhere a mothers comment which went something like....'I either have a label of autistic or spoilt little brat for my child, therefore i would rather have the label of autistic' I agree, my son has behavioural problems and I knew if I didn't get a diagnosis be would be kicked out of school pretty quick. If you are concerned go to your GP. He can refer on to the necessary people. Depending of where you live depends on the wait. M was on just the Communication Disorder Assessment list for 18 months, that was after being seen by CAMHS. I knew M needed an assessment. He was diagnosed a month ago with Autistic Spectrum Disorder. I although he is now 'labelled' believe it was the best thing we could do for him, particually as the autism appears to be showing itself more. Good Luck in what you decide, and remember to ask any questions here, it's what we all do. Oh and Emily I hope I haven't offended you with anything I have written as your answers are so spot on that it made me quite nervous replying this time! mum22boys Quote Share this post Link to post Share on other sites
Mumble Report post Posted April 30, 2007 Badonkadonk, I'm feeling pretty much under fire from all areas these days so I'm just going to bow out here. Heaven knows, I was only trying to help. For the record, I love my sons very much and I'm doing every thing I can to support them. BusyLizzie, For what it's worth, I really do not believe that Badonkadonk was in any way attacking you. It's just a case that particular terminology, which often originates from a neurotypical perspective, tends to grate against what we know it is like to be aspergic. Simply (if there is anything simple about this), to say Aspergers is something we 'have' brings inherent notions of something wrong that has in someway attached itself to us. We are not somehow NT underneath an aspergic 'front'. Mumble. Quote Share this post Link to post Share on other sites
bid Report post Posted April 30, 2007 Just to wade in...I am a parent and I have also been referred to CLASS for an adult assessment. Personally, it doesn't worry me to hear (or say) about myself that I (may) have AS. Although, just to be pedantic, I would say I am autistic. For me it just feels quite awkward linguistically to say I am AS. And I suspect you would all be horrified if I repeated what my 17 year old son and his mates at his special college for AS call each other...definitely not PC!! Bid Quote Share this post Link to post Share on other sites
pearl Report post Posted April 30, 2007 BusyLizzie, For what it's worth, I really do not believe that Badonkadonk was in any way attacking you. It's just a case that particular terminology, which often originates from a neurotypical perspective, tends to grate against what we know it is like to be aspergic. Simply (if there is anything simple about this), to say Aspergers is something we 'have' brings inherent notions of something wrong that has in someway attached itself to us. We are not somehow NT underneath an aspergic 'front'. Mumble. See, I get genuinely confused over terminology Mumble. When J was 1st diagnosed I was told to say he has Aspergers because to say he is Aspergers would make him seem like he was being defined by his diagnosis. It also feels clumsy saying he "is" Aspergers, particularly to people who dont know much about it. He has Aspergers like he has blond hair, fair skin - I dont think its particularly insulting, its part of him, not all of him. Does that make sense? J refers to himself as having AS & seems comfortable with it. Quote Share this post Link to post Share on other sites
Mumble Report post Posted April 30, 2007 (edited) See, I get genuinely confused over terminology Mumble. Hi Pearl, Sorry, my intention isn't to confuse and it certainly isn't to make anyone angry. I'm very tired, I've had a horrible time in university today and I'm feeling over-sensitive . I think Emily has put a number of these issues far more sucinctly than I can hope to do tonight. I think we're probably in danger of going down the 'cure' route, and that is so emotive, I don't want to comment further on that. It concerns me that 'to have' suggests a separation and a possibility of removing - that's all. I think there is a semantic difficulty here. I wonder if Bid has actually found a much clearer way of expressing this. I am autistic. Maybe the difficulty is actually in seeing Asperger's as a separate diagnosis from autism, which it is not. Mumble. Edited April 30, 2007 by Mumble Quote Share this post Link to post Share on other sites
Tally Report post Posted April 30, 2007 Hi Lisa, and welcome to the forum. I am (another) adult with Aspergers. It sounds as though your son has some significant Asperger traits. I see that many parents find it difficult to come to terms with the possibility that there is something 'wrong' with their child, but I don't see Asperger's as wrong, just different. Personally, I feel that diagnosis is important. Although your son is currently doing well in school, there may well come a time when things change. A lot of Asperger children who cope well with primary school struggle in secondary school. It will be easier to resolve any issues if the diagnosis is already in place. And it will help your son to understand himself. For a long time I thought I must be a horrible person, because I didn't have any friends. Understanding Asperger's has helped me to see that I don't actually make a lot of effort to make friends, and that actually, I do not need much social contact anyway. It won't be long before your son starts to realise he is different from the other children. If you can explain to him that he is indeed different, and this is why, he is more likely to see his differences as something positive, rather than the negative way so many undiagnosed Asperger children seem to see themselves. The best way to help him develop is to understand him, whether it be Asperger's, or some other condition. Quote Share this post Link to post Share on other sites
llisa32 Report post Posted April 30, 2007 Wow! - Thank you to all of you who have replied so far....I've finally found somewhere I can share my thoughts on this subject with people who have the experience and knowledge I need. For the record I am not the slightest bit worried personally about my son being diagnosed, or if other people see it as a label for him. it won't alter the fact that he keeps us on our toes with a smile on our faces and for the most part in tears of laughter. I know in my gut that he has most 'signs' of Aspergers, I've been reading up for months now...whats thrown me is the attitude of several teachers, which although I think they think they mean well...they're actually not helping - they've already suggested perhaps I'm worrying too much, reading too much into behaviours etc. Plus all the other cliched comments I've read on here - he'll grow out of it etc etc. It was his learning support teacher (for the dyslexia) who used the term 'mild aspergers' and she gave me the impression that it was a term used to describe those who were doing fine academically etc, and that she thought he would prob grow out of it - Obviously esp after some of the replies tonight I am now better educated myself and know that not to be the case I feel that I know my son knows he's different in some way to his peers, but he can't put his finger on why...on occasion he has come home from school saying that no one plays with him which as u can imagine broke my heart. That was about a year ago and of course I went into school and spoke with the teachers and asked them to monitor play time etc. I've also spent a lot of time with him explaining the fine art of playing with friends - the importance of sharing conversation, letting them speak etc...He has made some progress on this front, and does get invited to partys etc but if there is anyone running around and not eating at the table with the other party go-ers it;s usually him. I guess I wanted to share everything so I could convince myself again that I'm not overreacting and that I should persue this - the last bout of explaining my concerns to the school through me off kilter. He'll be going into year 3 this September and I fear his teachers won't be able to keep such close tabs on him at break times etc, I really don't want him to hate school. At the moment I really dislike feeling like some people just find him a bit 'weird' - it bothers me they think that. For example he has a real phobia about getting his hair cut and an absolute hatred of the water spray - it usally takes me an hour of coaxing to get him into the barbers (and to stay there!) and then he sits in the chair with the biggest scowl possible declining any conversation - god forbid they try and put gel in! - I use the same barbers each time as at least they are used to us appearing at the door several times before we actually make it into a chair - but I can tell they think somethings a bit odd - I think I wish sometimes I could tell them what. My take is that whatever the preference of naming convention is, he's still the same child, with traits that make him both endearing and different. I just really want to make sure I ensure the relevant people are aware of the differences and help guide him through. My biggest worry is the social interaction. If he never wears jeans, and only wants to eat with wooden handle cutlery who cares! Anyway.....I'm off on a ramble again - I've obviously been storing this up for a long time. Thank you again to all who have replied thus far - you are all being very help and welcoming. Quote Share this post Link to post Share on other sites
kazemporium Report post Posted April 30, 2007 Hi My son has been recently diagnosed with Asperegers, i didn't pick up on it that much myself, it was his school that noticed it. Your son does sound very similar to mine. I would look into to it. My son is the same age but has reading difficulty. The teachers actually reffered him to someone and gave me a letter to take to my GP. Try and make an appointment to discuss your son with the schools senco, maybe he /she can help. Good luck Quote Share this post Link to post Share on other sites
pearl Report post Posted April 30, 2007 Hi Pearl, Sorry, my intention isn't to confuse and it certainly isn't to make anyone angry. I'm very tired, I've had a horrible time in university today and I'm feeling over-sensitive . I think Emily has put a number of these issues far more sucinctly than I can hope to do tonight. I think we're probably in danger of going down the 'cure' route, and that is so emotive, I don't want to comment further on that. It concerns me that 'to have' suggests a separation and a possibility of removing - that's all. I think there is a semantic difficulty here. I wonder if Bid has actually found a much clearer way of expressing this. I am autistic. Maybe the difficulty is actually in seeing Asperger's as a separate diagnosis from autism, which it is not. Mumble. Youve certainly not made me angry hun. Just wanted to know if I was being offensive saying J "has" AS when he & I are comfortable with it. I couldnt separate the AS from who he is though. And I'm sorry youve had a bad day today. <'> Hope tomorrow is a better one for you. Quote Share this post Link to post Share on other sites
pearl Report post Posted April 30, 2007 llisa, just read your last post & had to smile, your lad sounds so much like mine! J still loves Youve been framed, & as for haircuts.... We solved this one by having a home hairdresser for years - much less stressful as theres no audience, for J it was the feel of the cut hair on his skin he couldnt stand so at home he could go straight into the shower to wash it off, & he didnt like the clippers so we didnt use them. All that is in the past now, he takes himself off to the barbers all on his own, then comes home & has a shower - see it does improve! Quote Share this post Link to post Share on other sites
llisa32 Report post Posted April 30, 2007 Thanks Pearl - Looks like there is a few of us putting up with Jeremy Beadle then!..... I used to have a home hairdresser, but she went into her own salon, and my son didn't like her much anyway - I alternate between 2 barbers now in the hope they have short memorys Incidently....do you/anyone else know if long term memory (practically photographic) is another trait of Aspergers? My son will recall trips/visits/games etc right from a very young age, and he'll recall the details...He'll also notice when ever my mum has moved any furniture around or decorated - unlike myself! - he'll then get the brownie points and not me I'm so glad I came across this site today - I must send myself to bed soon, but will definately speak again soon. Thank you all once again Quote Share this post Link to post Share on other sites
pearl Report post Posted April 30, 2007 Good grief llisa, were they separated at birth? J can remember dates, times, whole conversations, minutest details of the most trivial events from the past - if we want to know when anything happened, we ask him! Quote Share this post Link to post Share on other sites
Noetic Report post Posted May 1, 2007 Sure sounds possible however a lot of kids with things like Dyslexia or Dyspraxia etc. also have traits of ASDs. I know a guy with Dyslexia who has perfect visual recall but lacks the language and many other issues of ASDs. He's enough "like me" for us to be on the same wavelength but he isn't Aspie. Quote Share this post Link to post Share on other sites
badonkadonk Report post Posted May 1, 2007 Ok, eeek, where to start!!! I know I usually put these little asides at the beginning of my posts to let people know that I'm not having a go or deliberately trying to upset people and I thought that people might notice them and notice that I'm being genuine but it appears to not always work! I don't put this stuff here for a laugh, to add just a little bit more to the novel-esque posts that I already write, I do it for a reason. As much as I'm Aspergers and can tend to ruffle a few NT or AS feathers whenever I write things I'd like to make a little plea for you to remember that I am Aspergers!!! I would never write something if I didn't mean it or 100% believe it, I'm such an awful liar, horrendous at it, so please, please, please if you read me saying 'no offence intended, I'm not telling people they're wrong, I'm not forcing my opinion on people to be accepted' try and believe that I mean what I'm saying Just to explain the way I'm going to do my post in advance, to avoid any further mis-understandings (see, I'm paranoid about everything!) I will take the points that people have made that I feel I want to reply to and do it by person. I'm not singling people out for further attacks and I'm not here to tell anyone their opinion isn't as valid as mine. For the record I have never ever said that people have to do as I say or think like I do, even the whole flipping terminology thing (I'll get to that later) I know I said that when it comes to referring to it as 'I am Aspergers' it is 'just how I feel'. So when people have responded saying 'well I don't agree and I'm going to keep saying it like this if you don't mind' I would just like to reassure you that honest you don't have to tell me or fight back against what I'm saying because I don't expect anyone to even listen to me in the first place let alone consider adapting their thinking to sit more in line with mine. I'm not saying things on here so that people will stop thinking as they do and start all thinking like me, no way, never. I say what I say to just throw my lil' coin into the mix (as I'm entitled to, even if my opinion differs from the status quo) and to just add my view point. If people read it and agree, fair enough, if people read it and dismiss it, fair enough. I disagree with a whole load of things that are said on here and things that happen in the world but I'm not running around shouting at everyone or changing my thinking to get in line with everyone else so for people to think I would expect other people to do that just because I said something is to kind of underestimate my ability to accept difference of opinions. For what it's worth, and I hope this is now plainly clear, I wholeheartedly believe in different opinions coming together and floating about and hope that this gets through to people and that they don't feel in future that they have to defend themselves against me. Sure give me your alternative opinions, I welcome them, but you don't have to do it defensively Right onwards I guess... Lizzie - You are certainly not under fire from me Again, I wasn't attacking you or your opinions and I definately never once questioned the love you have for your kids or the support you give them. I have re-read my post a hundred times and I know that isn't what I put. Yes it does make me sad for your sons that you think of their 'negative' behaviour as them being more Autistic. I do think like this, I can't lie and say otherwise. But this is just my opinion and I'm just being honest. I'm not saying 'you're wrong, you're wrong, you're wrong' I'm saying 'I've read and understood what you're saying, here is my take on the situation' end of. I've said it a million times and will continue to say it, the very fact that any parent is on this forum asking questions about their kids...even if they aren't necessarily the right questions (in my opinion) or their attitudes towards ASDs aren't what I agree with...just shows that at the very basic level they at least care about their kids and love them. If I could 'ask' anything of the parents on here, as someone who is an adult who is Aspergers, or not even ask and expect it to happen just have it known...I would just say that as long as you never stop loving your kids and caring for them as well as never stop asking questions and learning more then nobody could 'ask' for more. I don't think you're a bad parent Lizzie, I simply don't agree with what you define as being Autistic behaviour, that's all...it's really not anything to feel attacked over. I understand that as a parent of an ASD kid (or kids in your case) that you spend a lot of time fighting for things and battling against people and that sometimes life can be full of people telling you that you're wrong. But again I would just like to plead with you not to put me in that box, I'm not one of those people. I'm on your side!! But just as that is the case it doesn't mean we are going to agree 100% over everything and there is nothing wrong with that (Just to pre-empt any more confusion, I'm not now attacking you either for you thinking I was attacking you in the first place, if that makes sense, just clarifying my initial intent because I don't like people to think that I'm intentionally setting out to hurt people when that isn't ever part of my plan.) Mum22boys - You definately haven't offended me in the slightest, don't worry!!!! I never sit here and claim to offer the best advice, the right advice or even logical and cohesive advice in the first place. Sometimes it's not even advice, it's just words strung together. I really don't want people to be nervous of replying to anything that I write for fear of upsetting me or unsettling me...go for it! I'm a big girl (literally) it would take much more than a few words to ever upset me. The fact that you were nervous replying when you replying to agree with me makes me worry what kind of ogre I must come across as But honest, I would never want to intimidate people. I'm 24, female (apparently), a bit of a geek (thick black glasses and an obsession for Spongebob Squarepants) and I'm a big softie (ask Neil) and I spend most of my days on here whenever I write a reply to anything fretting that people will take what I've said the wrong way. I hope this hints at the extreme lack of self-confidence and self-esteem that I have, I really do think I'm fairly useless and worthless. It's just that on here because I don't have to physically be in a social situation and I don't have to worry about people seeing what I look like that my personality is allowed to come through a little bit and that because of this I can come across as confident and upbeat. Usually I can breathe a sigh of relief when I don't cause World War 346. When I do cause a riot I like to not stick up for myself or reiterate my position exactly, but I like to clarify that I'm not trying to bully my opinion on others and that, honestly, I'm just here to help if I can. I'm no more or no less important than anyone else on this forum. Mumble - Thanks for the kind words, you're right, the praise thing is an issue for me and I wholeheartedly reject it (no offence) but I do appreciate what you said all the same and I think it's cool that we seem to think along the same lines. As for the whole 'I am Aspergers' thing, you got what I was trying to say and I agree one hundred per cent that if there was some way that people could take my Aspergers away I wouldn't simply then become NT, I would just in fact cease to exist. To take away my Aspergers is to take away me. I don't expect everyone else to feel like this, this is just how me and you feel and that's alright Bid - I understand that the terminology that I use to describe Aspergers is awkward and I still sometimes say I have Aspergers or those with Aspergers. I certainly wasn't thrusting my terminology on others and expecting that it becomes the term to use. Like I said above, just sticking my two bits worth in. In fact I'm fairly sure that's what I said in my original post but just to clarify...I have found that my Aspergers and understanding it sits better with me if I refer to me as being Aspergers. I have also found that other people find it easier to understand when I describe it as not something I have but as something I am. That's just the way I have experienced things and just my take on it. I have played around with the terminology and found that saying I am Aspergic or Aspergest just don't fly for me. Sometimes I will use Aspergic but I tend to avoid it if I can because it sounds similar to Allergic and my Aspergers isn't an allergy Similarly me saying I'm Aspergest, to me, makes me sound like I'm explaining my political stance so I don't use that either. I think that the difference between saying I am Autistic and saying I have Aspergers is because Autism doesn't have that whole 'syndrome' thing attached to the end of it. Just as it is awkward to say that someone is Autistic Spectrum Disorder, I still use it that way or at the very least say that they are on the Spectrum or fall somewhere in the Spectrum rather than saying they have an ASD. I think I am able to do this because I disregard the Syndromes and the Disorders as I don't tend to associate those words with who I am. Even though it felt awkward to say I am Aspergers initially I have now gotten used to this phrase and it feels ok to me. Again I'm not saying this to try and persuade you around to my way of thinking, just really I want to explain myself a bit better so that no mis-understandings arise. You say it how you say it, I say it how I say it....neither is more right/wrong. (So please don't worry that you've been saying it wrong Pearl ) Lisa - Thank you for giving my post a chance and not just seeing it as my having a go because I raised opinions that conflicted with what you were saying....I was so worried that I had totally bombarded you straight away and that I would frighten you off altogether. But I figured that if my opinion added something, anything, that led to a more positive way forward with your son then it was worth the risk. I don't want it to sound like I under-estimated your ability to deal with what I was saying, but I just know how over-whelming learning about Aspergers can be and I'm all too aware that you already have enough people around you shouting different things at you that are different to how you think/feel. The fact that you mentioned that your kid seems to know he's different but 'can't put a finger on it' just makes me more glad that I decided to post because this is essentially what I was getting at. Even though we might appear as if we are coping, and even if we are actually coping just fine and are happy in our lives, for me I can say that I always knew I was different and have found that this is common enough with other people I've talked to, to assume that it's pretty much granted that most people with Aspergers will feel the same. Things can go a variety of ways as kids get older and I can't say for sure what kind of experience your son will have, but I know for me not knowing that there was a reason why I felt different (and it was ok, it wasn't a bad reason) led to a fairly unhappy time as a teenager and young adult for myself. I would veer from being positive that I must be adopted because I was nothing like the rest of my family to be completley convinced that I had a brain tumour or was going mentally insane. I would even go to the doctors and beg him to send me for a brain scan because I knew it wasn't just an attitude problem or something I would grow out of. Had I known about Aspergers, even if I had rejected refering to myself as being Aspergers, would have at least led to me knowing that I wasn't mad, bad or dying. My fear is that other kids will grow up having similar experiences to mine and that just makes me literally hurt inside. To have to just deal with being a teenager is enough, to be an Aspergers teenager is mainly just different, but because it's being different in an NT-structured world, probably more challenging to cope with and understand. Add being an undiagnosed Aspegers teenager into the mix and all hell breaks loose. I'm not saying that your kid being undiagnosed would lead to unhappiness, I can't guarentee that him being diagnosed would lead to happy teenage years and beyond...but from my experience and what I've learnt and me believing a thousand times over that understanding, understanding, understanding is key to being Aspergers and living a positive happy life...pursuing a diagnosis has to be preferable than not. I'm glad that you seem to be thinking along these lines and I realise that it will be tough standing up to the teachers at school but that's what this forum is also for, to celebrate the happy times, to support through the bad times and to just keep talking to one another so that nobody stops learning. I realise I'm writing too much again but just quickly.....my boyfriend Neil is also Aspergers, he posts on here as TheNeil just so you know. He's ancient (well, 32, hehehe) and he still hates going to the hairdressers and has to get straight in the shower when he gets home. He also has that whole photographic memory thing going on, or instant recall as I think of it. He remembers little things that you've said that you don't expect anyone to remember and soaks things up that he is exposed to like tv programmes, films, books, computery things and what not. I on the other hand struggle to remember my own name and what I did yesterday but when I do remember things it is often in pictures. I might not be able to just reel off the shopping list to my mom if she left at home (as per usual) but if I try and visualise it in my head I can usually remember most things on there. Similarly I notice when people get haircuts or change their appearance and know when little things get moved around. But I don't seem to have the gift of remembering names and numbers like a lot of Aspies do. It is hard to say that anything we do is because of being Aspergers as we are ourselves and individuals first and foremost but I agree that it does seem to be fairly common Right, blimey I've been typing for what seems like forever so time for me to shut it! I can only apologise for how much I write and I do try to self-edit but I can't help it, honest, I take pages to say what a lot of people could probably sum up in two words, meh, if you read it all then fair enough, if you don't, fair enough I hope that I've reassured people that I'm not some big ogre out to get everyone and that people understand where I'm coming from and what I base my opinions on a bit better. I'm not defending my opinions by writing this (even if I have taken time to flesh them out a bit in an attempt to make them more understandable...please don't mis-interpret this as me trying to force them on you some more) but I am defending my approach to this forum and the people on it. I'll say it once more. I'm here to help, I'm here to listen and I try really hard to do this without offending people or making people upset. Sometimes in order to help or give my opinion it means me disagreeing with people or diverting from the status quo but y'know, so what, that's life!! Emily xxx Quote Share this post Link to post Share on other sites
TheNeil Report post Posted May 1, 2007 What do you mean 'ancient'? Just you wait until I get up out of this chair (which may take a while given my advanced years) and I'll show you 'ancient' Quote Share this post Link to post Share on other sites
barefoot wend Report post Posted May 1, 2007 Lisa I would think about getting a diagnosis for your son for the simple reason that although he's coping at present, this may not always be the case and it is easier and quicker to get help if you require it once his condition has been recognised both at school and by professionals. That's not saying that I definitely think you'll need it later, just that you'll have less hurdles if you do. Barefoot Quote Share this post Link to post Share on other sites
KateBall Report post Posted May 1, 2007 I just want to say that whilst its hard and stressful all the time ds is thumping me or swearing or having a meltdown, coping with his moods and various triats - I try terribly hard not to think of him as having something "wrong" . I honestly think of how "special" he is. I hope my son grows up to be as eloquent and insightful as Emily. It is so fantastic that this forum makes it possible to learn what you other special people have to say. Quote Share this post Link to post Share on other sites
llisa32 Report post Posted May 1, 2007 You have all been so very very helpful - I feel like I've been woken up from under some sort of rock..all of your replies have been informative and enlightening. I've done nothing but think for the past two days (not a lot of work getting done and I now think that on a subconcious level I may have been preparing both myself and my son for a diagnosis for a while now....here's some more history: Son went to small day nursery, ended up being fav pupil and spent most of his time there hanging out with the owner and her dog or speaking with the nursery nurses about their lives , they were all in tears when he left rather than him! - he was massively looking forward to 'big school' but that turned into a huge disaster. Everyday for 8 weeks I had to either shove him thru the classroom door crying, kicking and screaming or run down the road trying to catch him as he made a run for it. I explained to the school that I didn't think the half days were at all helping him to settle, nor was the hideous morning routine of the entire class of 30 all waiting outside the classroom and then steaming in together in one mad nosiy huddle - they weren't ata ll interested and took the stance he was just playing up about going to school. I disagreed as I knew how much he'd been looking fwd to it - I thought the shock of being in a large noisy class, as well as new teachers, surroundings etc was just too much for him. The only comment his teacher had to make after 7 weeks when I asked how she thought he ws getting on was 'He's a bit noisy isn't he?'! So...checked out more schools, all the other state schools were full/out of catchment, I knew I had to do something so we looked at independant schools. I purposely chose one that he could attend until the age of 16 to avoid the change thing again (at the time I knew nothing about aspergers and just felt my son didn't deal well with change). The class size is 16, they can go into the school a good 20 mins before registration and settle with a book/play game etc and within a week he was happily attending full time school! - bingo! During all of this time he's been a finicky eater, his clothes have to be soft, you will never ever see him with his socks not pulled up! (weird that for a boy I know - other parents are well impressed when they see him . He has a bed ritual at my mums when he stays there that he will not change and musta watched the same video there about a thousand times now. We can never just tell him we are going out - have to give advance warning or he pulls a strop, likewsie with bedtime, have to be really patient and do a good countdown if theres any hope of peace. He loves baby's and children younger - I think thats cos he feels they can't/wont judge him - he also adores animals and we probably have enough soft ones to fill noahs ark 50 times over! He is very direct with his speech, and for the last year or so I have been trying to teach him about interaction/whats good to say/whats not/facial expressions etc. He see's nothing wrong with stating fact, and actually at the moment will never lie - he always always drops himself in it, or tells you when he done something wrong. He has recently named us 'the big bum family' because he thinks we all share a big bum - and whilst he finds that funny, because it's kinda true, he also sees nothing wrong in also telling the barber, the electric meter reader etc! - never a dull moment round here He speaks like a little professor sometimes and you have to do a double take when you hear him - body of a 7yr old, voice and expression of a 50. Ok.....I think what I'm trying to do is double check with myself that I'm def not being over reactive, and i think the more I write down my son's life thus far the more i answer my own question...I do need to get this sorted out. I'm lucky at the moment as we have more funny moments (I'm hanging onto my humour - you gotta have one), than really dark moments. However, after reading many people stories on here I know I can't afford to put off seeking a diagnosis much longer as year 3 is looming and currently we have agreed with learning support that he no longer needs the additional lessons from them in year 3 - although they will restart if my son starts to struggle on the reading side. Because he has made such good progress the learning support unit thought it wouldbe better for him to start year3 without them so he was the same as his peers - does that make sense? (just so he wouldn't feel the odd one out they said) So I guess I'm kind of double whammy worrying....re how he will cope with year 3 and without the additional reading support. Really sorry for such a long post - again!, It seems to be pouring out of me All words of wisdom greatly appreciated! Quote Share this post Link to post Share on other sites
lynda4 Report post Posted May 2, 2007 Aaaaw it all sounds so familiar. Sounds like classic Aspergers to me and what a sweet little lad he is, I could take him home! From reading more about him, I'm pretty sure you'd get a diagnosis without too much trouble. Keep thinking about it and write it all down, take that along with you when you go to your docs and ask for a referral to a psychologist. It would probably be easier and quicker that way than going through the school, as there are long waiting lists for ed psychs and it doeesn't sound as if the school would put him at the top of their list. I would say you're SO lucky to have found that school, but I know its hard work and research on your part not just luck, we make out own luck in this world. The school sounds perfect for him, he's happy there and they think he's great. The class sizes are incredibly small for that age group! My children went through junior school with 35-38 children in the class. I am sure that the small class size, the caring teachers and their acceptance and understanding of his difficulties or quirks has a lot to do with why you haven't had any major problems with him, that have led you to a diagnosis before now. It also sounds like you've been and still are, an excellent mum, very aware of his strengths and weaknesses and adapting yourself accordingly. I do love the way you've come on here and asked advice, before jumping straight in with a diagnosis and have listened carefully to what we've all been saying, thought hard about it and will be acting on it. I'm sure with your support and the school being so well suited to him, (til 16 too! ) he'll have a happy childhood. My kids are 24, 22, 20 and almost 14, all are affected to some degree by autism, three are diagnosed. All have had some difficulties in their lives but all have been happy and still are, ok not all the time but who is? Sure they have had times they haven't had it so good but then so do kids without an ASD for other reasons. Other, NT children may have a parent who's sick, may suffer abuse at home, they may be bullied, have no friends or struggle with schoolwork or a teacher who doesn't like them etc etc. There have been battles to be fought and it hasn't been easy but it's been me who's taken that on, not them. Sometimes I feel sorry for myself with all I have to do and the stress I'm put through, but this is more to do with the authorities not helping, red tape and all that, than the day to day care of the kids themselves, especially as they've grown older. I'm not in any way saying its easy but it does help me to remember that other people also have it hard for other reasons, my friends NT kids have caused their parents no end of stress and worry with boyfriend problems, teenage pregnancy, drugs, drinking, no job, fast driving, shoplifting etc etc It's unlikely that our kids will go down that route. Its tempting to think, in a low moment that other people have it easier but unless you talk on a very personal level with everyone you meet, you really have no idea what problems other people have and what they have to deal with on a day to day basis. You just get on with it as best you can, try to keep a positive outlook and make the most of all the wonderful things there are in life when they come along. People with ASDs have so many great qualities and I really enjoy my children's differences, the way their minds work, the things they come out with and the way they reason. Their brains are 'wired differently' and that makes for endless possibilities, trains of thought and some wonderful insights, especially as they've grown older. They make me laugh and they make me cry but they're never boring. If there was 'a cure for autism' and you took all that part out, you would lose their individual personality which is intermingled and built around the ASD. You'd lose the essence of them and what makes them so special and unique. I wouldn't want to do that - though its tempting to think I would when I'm having a hard time of it! So I asked the kids if they would want a possible future 'cure for autism' none of them would, all are happy with the way they are and wouldn't want to be NT, they all like being different and special. Well I've gone on and on as usual, autism is mypet subject and I have a tendency to ramble. it's just that like other people on here, I have strong feelings about all this. I hope some of it made sense and that I didn't sound patronising or anything. Good luck with getting your diagnosis. This is a great website, full of support and tons of useful info, there's nothing to compare with first-hand advice, learnt through experience Quote Share this post Link to post Share on other sites
llisa32 Report post Posted May 2, 2007 Thank you Lynda - really appreciate your comments.... When I discussed my concerns with my sons year one teacher last year, in amongst the comments of, he'll grow out of that, or tell him that cutlery's been thrown away etc etc, was a question that I couldn't answer... She asked me 'If he does have Aspergers' , what would you want the school/teachers to do?, she didn't say it in a nasty way...but I actually didn't have an answer ... My main concern is his social interaction and potential bullying as a result...you can see he'd love to join into more team related stuff but he's just too scared to. His learning support teacher for the dyslexia said 'we all have out little 'eccentricities' and yes we do, I know. But although they seem to accmodate those at present, I'm worried that not all kids/other parents do. One comment I've had from another mum at the school after one of mums son's odd comments to her was 'He's a funny little thing isn't he? - again, not said in a nasty way but she obviously found his comment to be a bit strange. What he'd said was that he was going to fold his teacher up and put her in his suitcase after she'd jokingly told him she wanted to go on hols with him! I think she thought he'd said it a bit too seriously! I'd like the school to pay closer attention to his interactions at breaktimes etc, and monitor if he is actually holding conversations with the group he might be standing with etc, and also I guess to be undertanding of his current aversion to 'team' sports - he seems fine doing general field work/school work in a small group - but anything competititve or where he feels he might look silly or need to actually interact (football etc) he really does not want to know. What do I say if I get asked that question again? - is there a good answer? Quote Share this post Link to post Share on other sites
mum22boys Report post Posted May 2, 2007 Hi, It seems to me you partly answered your own question. I can't do quotes so will have to point you to your last paragraph. You are concerned about his social side, interacting with others etc. It really annoys me these teachers who just don't seem to get it. How dare his teacher say 'what do you want us to do about it' Provide the right and appropriate resourses would be my answer. Unfortunately me like many others on here do not have a good relationship with our school due to their lack of understanding. My son is the same age as yours, going into year 3 in Sept. He has just been diagnosed with ASD and he recieves no help at school at all. I sometimes can't believe I have a child with autism in a mainstream school and he gets no help. M's school are good with excuses, this time (last weeks meeting) it was , well when we get the consultants report and the written diagnosis (like i'm lying) then we will look at what he needs. In my opinion schools just don't want to help. Mine has until Sept to provide M with help and if not I will move him and his brother to another school. Try not to be fobbed off like i was with comments like' we can't get him any help until he's diagnosed' The funding system has now changed and they can help. If you decide to seek that diagnosis please do because although he may be fine now things do change. M has definatlely got worse. Barely a day goes by when they haven't had problems at school with M. Depending on how good your school is will depend on how they are prepared to help. You are worried about his social skills and maybe they could provide social skill classes, something i have been battling to get M 's school to do. Good Luck, and next time you are faced with that sort of question make sure you can wipe the sarcastic look from their faces!! mum22boys Quote Share this post Link to post Share on other sites
Bambi Report post Posted May 2, 2007 Hiya Like u and i have to say shockingly like u i have had from school staff 'but we cant give any help until T has a diagnosis' so until then the child and his difficulties are nothing to be addressed before then, ###### criminal!!! It makes my blood boil when i see how many of us face the same c**p! Are we in a society that is ignorant and not understanding the needs of special needs children and adults? sadly i have to say in my opinion for the majority of us (or at least people i know )the answer is yes. We have to fight for EVERYTHING whether its clear the child/adult needs the help and support or not, we have to battle all the way. I would push for an assessment of ur son asap and dont let them fob u off or turn a blind eye because in the meantime ur son is in need of help, good luck! Bambi x Quote Share this post Link to post Share on other sites
llisa32 Report post Posted May 3, 2007 Hi all, and thanks for the comments thus far. I have no idea why but I am faffing about ringing the Gp to get an appt for me to go speak to him and I have no idea why - I think i am scared of someone else telling me I'm over reacting cos quite frankly I'm not sure how polite my reaction to that would be. I see from quite a few of the notes on this forum that many of you have had to fight tooth and nail for the support your children need - did many of you also struggle with getting anyone to take notice of your concerns before eventually getting a diagnosis? I picked my son up from school tonite and was casually trying once more to see how he'd found breaktimes etc cos according to school he's 'out with all the children' and seen in groups etc. However...just because they can see him standing near a crowd does not mean he's actually interacting etc. Tonite he told me that 'I mostly just wander around at breaktimes looking for people to play with' ! - His view on why it's a little difficult to make friends is because a few of the other boys in his class all went to the same nursery as each other At the moment he doesn't seem unduely bothered but I know he feels lonly and often comments on having no friends. During my infamous chat with year one teacher last year i was told that as he's an only child perhaps I'm not making enough effort to get him socialising with other kids - hence y he was finding it diff they said. So....we have been doing 'playdates' but working fulltime I struggle to fit more than 1 every few weeks in. But he won't even go to any of the after school clubs with the guys from his own class - even just puzzles, or running around with skipping ropes or a football. He's always just desperate to get home to his nannys house to see her and the 2 dogs or back home with me. Sorry...I know lots of you guys on here have got much worse situations than mine that you're dealing with I guess I'm just in a sticking point at moment. I'm just being a complete wuss at the thought of the GP saying 'he'll grow out of it' or anything remotely to that effect!. I've currently prepared myself a statement (so I don't forget anything to tell the GP)- just outlining what I perceive to be behaviours that are a little diff to the norm - plus his likes/obsessions/phobias etc. I've also dug out the learning support assessment from 2 years ago which states his high verbal IQ as opposed to low score on the auditory working memory test. It also states on there that in the one to one setting his attention wandered, and he fidgets Anything else anyone can think of that would be useful....and anything else i can do to convince myself that i'm not overreacting ? Many Thanks Quote Share this post Link to post Share on other sites
barefoot wend Report post Posted May 3, 2007 llisa32 I'd try to the find the name of a specialist that you'd like to be referred to - look on the NAS site. In my experience GPs often don't know loads about autistic spectrum disorders and will refer to a local CAMHs team that usually doesn't have an expert, and then you have an uphill struggle to get a definitive diagnosis. Good luck Barefoot Quote Share this post Link to post Share on other sites
pearl Report post Posted May 3, 2007 Ooh this brings back memories llisa. Dont be sorry, we've all been here at some point. I agree with barefoot, this is what I did. We were lucky in that J's headteacher was clued up & spotted his problems, & arranged for an autism research team to assess him. (He was 4) We were lucky it was around then, dont think it exists now. The lady gave me a description of Aspergers & it was a lightbulb moment - yes, this is him, I'm not imagining it. She then said I needed to go to my GP, tell him what had happened & gave me the name of a specialist who could diagnose AS that we should ask to be referred to. Went along to GP, said, J has been assessed by the Autism Research Team... The WHAT? he said? Oh havent you heard of it, I said, well let me enlighten you. Five minutes later, he simply said, tell me who you want me to refer you to & I'll do it. Result. Dx followed a couple of months later following extensive observation, blood tests etc. So go in there informed & knowing what you want hun. You may feel like a wuss but believe me you are not, you are fighting for your lad & you will find reserves of strength & bolshyness you never knew you had. Keep us posted, we are all rooting for you. <'> Quote Share this post Link to post Share on other sites
Flora Report post Posted May 3, 2007 lisa you've had some fab advice so I'm not going to add to that... but will share briefly my own experience. I first broached the subject of my concerns about Bill when he was 2... during an appointment with a paediatrician for bowel problems he had. I had never heard of AS and didn't know the first thing about autism. The paediatrician said 'he just sounds like a normal toddler to me'... so I left it there. There followed a few years of all sorts of difficulties in nursery.... hearing tests were done.. all normal... was told by the consultant who checked his hearing that there was nothing wrong with his ears he just had a bad attitude (he was 4 at the time!)... He had all sorts of problems at school which we were waiting for him to grow out of. Deep down I instinctively knew that either he WOULD grow out of it, but if he didn't then we would get to the bottom of it eventually. 'Eventually' finally arrived and his year 3 class teacher suggested he should be assessed by an EP... EP assessed... said he was probably autistic.. GP referred him to CAMHS and within weeks we had a diagnosis and the rest is history. Don't give up.... listen to your instincts. <'> Flora x Quote Share this post Link to post Share on other sites
mum22boys Report post Posted May 3, 2007 You are not alone in feeling like this <'> <'> I too went to my GP not knowing what to say. At that time I knew very little about the autistic spectrum and i didn't dare mention my concern, that it seemed to me M was likely Autistic. I simply went there and said 'I am concerned about M's behaviour' He asked why and i told him about the terrible tantrums. At this time I didn't mention the obsessions etc just the inability to cope with change. My GP was great, he told me to spend 2 weeks writing down everything that concerned me, which i did. I went back and he referred M to CAMHS. Now they were useless, I had to spell it out for them what I thought was wrong with M and she doubted what i was saying because...he made eye contact with her I still went on and on until he was referred to the community peadiatric team, they agreed to refer him to the CDAC unit. M spent 18 months on that waiting list and yes I spent the whole time trying to get the school to understand that there was something wrong with M. Schools are either understanding or not, M's isn't. After the battle we finally got a diagnosis for M- Autistic Spectrum Disorder. The relief was so great to realise that I knew even though the school had me labelled as a neurotic mother - I was right. Even though I have told them they still i think disbelieve me and tell me they need it in writing. Do not be afraid of telling people you believe there is something wrong. Even if they doubt you keep on at them, i am glad I did. You are his mother you know him better than anyone. Also I have exactly the same as you with the school saying M is fine in the playground. It was only when he started hitting the kids who wouldn't play with him that they listened. Remember their observation is probably with their head in a cup of coffee from the staffroom window Write down what you want the doctor to hear and go for it. Let us know how it goes, when is the appointment? mum22boys <'> Quote Share this post Link to post Share on other sites
llisa32 Report post Posted May 3, 2007 Thanks guys, you're all helping - just had the weirdest 2 hours...had my oldest school friend who's a primary school teacher on the phone telling me her mum had just passed away . I haven't spoke to her in detail about my concerns for last year or so as her's mum's been ill and didn't want to distract her...however....she wanted distracting this evening:) - so we talked about her mum for an hour and then my son for another hour. She's one of the teachers you want...if she has a child in her class with special needs she'll find out about the condition, and see how she can accomodate in her teaching etc etc. She was intrigued about my son, agreed I needed to get it checked out and questioned the schools motives in currently denying any existance. She found it odd that they were happy to accomodate and assist with a dyslexia disgnosis at 5 which involves me paying xtra money for xtra support lessons...yet they seem not to 'see' what I am seeing re Aspergers. Either she's right or we are both being a little bitter tonight I appreciate all your support...my docs only makes appts on the day now, so have the number ready to call at 8.30 in the morning for a double slot. I'm targeting the same doc that I actually saw with my son on wedsneday for a slight sprained ankle as I'm hoping he might recall how vocal my son was about the wait we had - and how the doctor 'was twisting his skin off' when he was looking at his ankle BTW....this evening my son who I'm gonna start calling J now as he's a Jamie and we call him J, has 'mastered' how to play some sort of a tune on the recorder, and know nows the 'technique' for breathing After playing something that made the cat run away he had the nerve to ask me if I'd like to 'master' the same tune Never dull Thanks all, I will update tomorrow, fingers crossed Quote Share this post Link to post Share on other sites
mum22boys Report post Posted May 4, 2007 Just wondering how you managed to get a dyslexia diagnosis at five. M was screened for dyslexia just to see if he would need the proper test, that was when he was 5 and he came back as medium to high risk. The school said i would have to wait until he was 7 before he could be properly assessed. I was also told that by the dyslexia people who do the assessments. mum22boys Quote Share this post Link to post Share on other sites
llisa32 Report post Posted May 4, 2007 Hi mum22boys...I think only because I was lucky enough that the independant school I moved him too has a learning support unit attached and his reading ability was so far behind his verbal it was very clearly apparent there was an issue. Dyslexia/other reading/literacy problems are the LSU at his school main area of expertise. They did say at the time if we wanted it confirmed by the dyslexia institute that we'd have to wait a year or so prob before they would confirm because of age. He basically had to start right from the beginning again with reading learning all the sounds/phonics etc and alphabet etc. Major breakthru when he could finally recite the alphabet with getting into a right old pickle in the middle. If you strongly suspect dyslexia I would try and get the extra help with that before diagnosis - although easier said than done I know, but the diff it's made to J has been amazing. He will now attempt to read signs etc on his own and it boosted his confidence which was knocked quite a lot as he noticed the books all the other kids were reading that he couldn't. Rgds Quote Share this post Link to post Share on other sites
llisa32 Report post Posted May 4, 2007 BTW.....I've done it! - I've been to the GP this morning armed with my list and J's school assessment from the LSU and he agrees that a referral is needed ! - hurrah... I asked him the usual....'was he sure that was neccessary'', 'don't wanna make a fuss etc etc...and he was lovely - said who will know about from me, him and the psychologist? - therefore nothing to lose and best to get a professional opinion. I also got lucky as he knows some of the staff at J's school - which I didn't know before today. Just relieved now....he put me right at ease...know about varying scales/degrees of autistic behaviour and told me that it's the parents that know best! - so guys were all right! Thank you all so much for giving me the extra confidence to go with it...Hopefully won't wait too long for a referral now. Quote Share this post Link to post Share on other sites
