cmuir

Hmmmnnnn - very interesting. My son's consultant suggested out of the blue that he have some genetic tests in conjunction with an endocrinologist (R is currently undergoing tests relating to puberty). She said he had some distinctive features, etc, but wouldn't be pressed to answer what she's was thinking, nor would her research assistant. R had tests done 7 weeks ago and we're currently awaiting the results. Can't help wonder if this is what was thought of as some things tie up. Thanks for this. Caroline.

Hi Sally Thanks for your response. Kiddo has an IEP though it's not been well written and an official from the EA has already spoken with the school on more than one occasion. I've also contacted a specialist teaching service (part of the EA) to go into school as they're treating the symptoms of ASD, but not the disorder (by that I mean they're treating him like a badly behaved boy and trying to tackle the behaviour, but not looking at why he behaves the way he does). I've got a meeting on Monday with them, which I'm envisaging will be difficult, but I'm really unhappy with the way things are going (apparently HT shouted at kiddo today and he doesn't seem to know what he did wrong which resulted in an escalation). I've already been in touch with various organisations, but discovered that the school have told me that referrals have been made, but haven't, so I fully intend to establish why. I really feel they've failed over the years to provide specialist support. Only because things are really bad, they're not making noises. Makes me so cross. Hope things get easier for your son too! Caroline.

Hello My son is 10 (has AS) and is in a mainstream primary school with full-time LA support. School has had 3 headteachers since September (permanent one left, replaced with a temp, and new one no in post). He's been fine since latest HT started, however, has been non-compliant, aggressive, and extremely verbally abusive towards her and other staff members. My one observation was when I took him into school (late), HT opened door, greeted us, however, R responded by moving inches away from her face (bodily language - intimidating) and calling her all the names under the sun. Her tone of voice was firm was she appeared out of her depth (couldn't of been easy for her as I was standing there, and she's new to kiddo), but she lectured him on not disturbing and preventing other children ffrom learning, etc etc. All of which inflamed situation. Most days have been like that since. Latest is that kiddo has lost golden time for this week and next, and is to lose playtimes and lunchtimes all of next week as well. I think this is fundamentally wrong, and feel strongly that no support measures have been put in place to help R cope with the various HT's and their varying teaching styles (it should also be noted that when R becomes difficult, the SFL teacher and HT are called to the class to intervene i.e. R becomes overwhelmed by all of these adults piling into the class!). I feel that a much better strategy would be for them to actually implement ASD teaching tools including social stories, comic strip conversations, visual timetables, etc (which they are not, and haven't done - they dismissed the notion outright). My issue is that firstly, they seem to be failing to her kiddo cope with change, and then secondly, instead of promoting positivity, they're piling on too much pressure, without kiddo having the opportunity to e.g. earn back golden time, playtime, etc. It should also be noted that R has been assessed for ADD, and so I feel that playtimes are extremely important as it gives R the opportunity to let off steam, relax, etc. I'm not for a second saying kiddo shouldn't be punished for bad behaviour, but I fear he's now of the mindset that as he's lost golden time, playtime, etc for the next week, then what's the point of behaving and working (and has actually said that to me). Help - advice needed, review meeting has been brought forward from September to Monday. Caroline.

Hi I'm NT and so perhaps shouldn't be replying to this, however, I have an AS son. For me, the biggest thing that I took from this book was that I was constantly trying to look/apply logic to some of my son's behaviours, fact is, one cannot always apply logic. For example, four red cards parked in a row means it's going to be a bad day (or something along those lines - it's been a while since I read it) - how can one apply logic to that, though to Christopher, that perhaps was perfectly sensible. I thought it was a really good book in highlighting some issues faced and in particular, the volatile relationship between him and his father. If memory serves me correctly, the book covers an argument and then the next thing Christopher is sitting with a ripped shirt and his dad has a ###### nose (again, something along those lines). It shed a bit of light on my son's meltdowns in that sometimes I genuinely believe he loses control and afterwards has little or no recollection. I wasn't left with the impression that it stereotyped, but thought it was well written leaving me with one or two snippets that were perhaps applicable to my son's situation.

Hi I'm NT, hubby is AS (after son was diagnosed). It's not a marriage made in heaven and has it's difficulties, but I think it's like everything else, it's about acceptance - we ALL have our funny little ways/idiosyncrasies (though I do not share the belief that everyone's autistic!) and it's about learning to get along. Equally, I have my strengths and weaknesses, as does hubby and so it's very much about being a team. Not easy, but works somehow.

Hi Just completed the questionnaire. I fear that there are a number of questions that required more explanation and wasn't enough space to do so. Also, questions from around 60%+ could be misleading. Some questions e.g. relating to 'do you feel anxious, difficulty breathing', etc etc could be attributed to pre-existing medical conditions e.g. asthma or heart defect, and not necessarily down to stress, depression, etc etc. Lastly, questions relating to feelings of worth, etc might be specific to one small area e.g. utter frustration in education system/support and not a global issue. Apologies if I've misread anything (or not read!), thought it worth highlighting.

Hi Not sure there is a correlation between gender identity and autism. I think people who have gender identity issues may well be confused, feel isolated/alone, become withdrawn, etc etc, i.e. have some traits which may well be confused with ASD traits.

Hi I think I know what you mean... Caring for an ASD son who has significant anxiety issues and behavioural problems, I've found that I have to consider outings, going to restaurants, visits to shopping centre, etc etc. As a result, I've found that because I've had to consider things very carefully, it's almost like I've adopted his mindset in some way, which I think to some degree impacts upon me, whether it's out of habit/routine or way of thinking. There was a recent programme about Carers in Scotland and I think one of the families summed things up in a nutshell - when they were given some respite, both parents were often too exhuasted to actually go out. They went further and added that it was almost as if they had lost the ability to do normal things. Caroline.

Hi Best advice I can give is to persist. Don't be told let's wait and see. We hear lots and lots about early intervention (how important it is), and so if kiddo does have an ASD, is losing out on support, etc due to the absence of a diagnosis if that's what kiddo has. Certainly in my experience, I was actually told that I was a stressed out first time mum that needed to cut my working hours down. I was furious because my heart and head told me something wasn't right. It was so much easier for the blame to be put on me or constant delays or excuses. Sure, healthcare professionals have to get the whole picture, but not only does that include scrutinising parents parenting styles, but it also involves observing the child over a period of time in a variety of settings. That process doesn't necessarily have to take years! My son was diagnosed at 4.5, but things only started happening after I expressed how concerned I was that we were being passed from pillar to post (I had 19 reports and seen a variety of professionals - seemed no one was prepared to say definitively what was wrong). I'm not suggesting parents stamp their feet and say 'hey my kid's got X, Y Z), but I think everyone has a right to be treated fairly with proper investigation over a reasonable (not prolonged) period of time. Difficulty is that often investigation requires a multi agency effort and depending on how kiddo presents within the various settings can give a mixed picture, however, from the age of 3 onwards things can start to become more and more obvious (certainly in nursery, kids start to learn how to share, social skills, etc, etc and so issues start to show). I remember being at breaking point and it sounds like you've reached the same point - it's worth telling your GP how difficult things are and asking again for a referral). Best wishes.

Hello Obviously only applies to limited number of members... http://www.bbc.co.uk/news/uk-scotland-17506882 Last night on BBC1 was a programme entitled 'Living Life with Scotland's Carers'. It covered 2 families; one couple who had a 16 year old severaly disabled son (cerebal palsy, epilepsy, blind, etc), and another woman with a 22 year old son called Kasim. Kasim has Aspegers and leads a very isolated life and is solely reliant upon his mother, whose struggling to stay remain sane. It was really very moving and I think in the case (relevant to this forum) of Kasim, viewers were given a taster of how challenging he can be to care for. The programme was highlighting how difficult parents fight to get support, as if life isn't hard enough for them caring for their loved one day in day out. Interestingly, both mothers fought over the years to get appropriate support, yet things only started happening when the authorities were aware that the BBC were involved, yet streniously deny this, maintaining support has always been offered. Kasim, for example, was offered a home help and a befriender, yet what Kasim wanted was a genuine friend and not someone that was paid to be his 'friend'. Instead he and his mother wanted support in College for him to be taught social skills, build up his confidence, have a social life, etc etc. But, because they turned down SW offer ofa befriender, SW closed his case - again, case was only re-opened after BBC's involvement. In both cases, the carers were at breaking/crisis point. Very, very sad, that I can currently relate to everything in last night's programme, and I dare say a lot of forum members can do too. Worth watching it on iplayer (or equivalent). Caroline.

Hi Had a nightmare of a time with kiddo just now (he's 10 and has AS). To be honest, over the years, things are getting progressively worse - tonight was no different. Think kiddo is going through puberty just now (no excuse, but a reason), despite what endocrinologist says (sleeping pattern has changed, kiddo is spotty, moody, etc etc). Tonight kiddo lost the plot once again because he was given a 5 minute verbal reminder to stop playing on his xbox for a bath followed by a 2 further requests 1 and 2 minutes thereafter. Kiddo became abusive and continued to do so, before stopping briefly to apologise, saying he couldn't help it, fearing that I would actually he was told he would lose his xbox tomorrow. Kiddo was advised that I have to impose sanctions for his cheek and things continued to escalate. R hit and punched himself in the face, head and body for a marathon 1 hour and 40 minutes. This sounds harsh, but I just switched off - think I'd win a parent of the year award?! He's done this so many times, that I refuse to react to it. He's noticeably covered in bruises, and has just prior to Christmas told school and SW that his dad hits him (he's pulled that stunt with me as well in the past). When R noted no reaction he upped the anti calling me a fat cow, etc etc and threatened once again to punch me in the face after telling me that I would regret this tomorrow (said he's going to tell school that he's been hit). Kiddo got told in no uncertain terms, no to lift his fists to me (he's physically large in terms of stature and height - he's same height as me - 5'4"). R finally fell asleep (or knocked himself out), likely getting some rest before the next instalment tomorrow! School reported in his diary yesterday that he'd had a good day. R's language told a different story and when school were asked about this, decided to change their version of events - kiddo had in fact walked out of class and was cross after another kid kept making noises. Hardly 'a good day'. CAMHS keep offering parenting programmes (same ones that I've already attended), keep cancelling appointments, and the ones that we do have, R doesn't feel like talking. Social Services equally as helpful. Admittedly, I actually called SW and emergency number - got no answer! (the one occasion, where I've actually felt desperate enough to phone them). Don't know whether this was stupid or not (felt therapetic at the time), but sent the social worker a rocket of an email advising that there will no doubt be a recurrence of this very soon, and next time I'll be phoning them and asking them to come and get him in order to get a wee taste of life in our household. Could scream! Sorry to rant folks - just physically and emotionally drained after yet another drama.

Hi Special_talent123 It's okay to 'rant' - in fact, it can be therapeutic. It can be a let down when people don't necessarily interpret things in the same way that you do (or I do, etc), but the one thing about this forum is that you generally get feedback from others, NT and AS. I guess what I'm trying to say is that it's worth trying to view things from how others might have intended or viewed things. It sounds like your relationship with your folks is tricky and that the difficulties may lie very much with how they perceive you/AS and in turn how you view them. In some of your posts you give quite an emotional response (not a criticism), but my advice would be to try not to react without thinking things through. For example, after attending many frustrating meetings with education professionals, there have been times when I've been extremely cutting in my remarks and not held back with criticism. Over the years, I've learnt to try and think why they've handled certain situations they way they have, what restrictions are placed upon them, etc etc. In trying to see things from the other side of the fence, it's made things easier and I think we mutually have a better understanding. Take care. Caroline.

Hi To be honest, it sounds like your sister was trying to make a real effort and at the same time perhaps advise what's socially appropriate. Perhaps it's a series of misunderstandings/communication issues between you that have escalated. Obviously, I don't know without knowing all the ins and outs. Perhaps give each other a bit of time, but sometimes it does no harm to bite the bullet and wipe the slate clean i.e. start again with them by putting these issues in the past. In addition, going from your previous posts, your sexuality is a big thing to you and in some way is bound to define who you are. However, I personally feel that a person's sexuality is neither here nor there - sexual preference is a very personal thing and whilst you should be able to talk about it openly, it's actually a very small part of who you are. Hobbies, interests, feelings, thoughts, and so many other things are part and parcel of you. Sorry, don't mean to sound unsympathetic or dismissive (I'm not being), really just trying to convey that it's obviously a difficult time for you 'coming out' and perhaps it's something you're very sensitive about, whereas your family are perhaps trying to make light of it (joke) and in doing so think their being supportive. I'm not on speaking terms with my sister or my mother mainly because I feel that they're very self-absorbed individuals whom have never provided me with support at particularly difficult times (I was diagnosed with a rare degenerative eye disease and have since undergone various procedures and surgery - I have a graft, and I have an extremely challenging 10 year old son who has AS). You really have to be sure that you can go it alone if you decide not to meet them half way or make an effort to patch things up. It's not reasy! I can't say one way or another, but you really need to weigh up whether the issues you've had with your family are irrepairable. Hope a new day sheds new perspective on things. Best wishes. C.

I wouldn't dream of labelling or attempting to guess on way or another whether members have AS or not. But one thing that I think is worth pointing out is that although specialists have a checklist, ever person is an individual. No two people or Aspies are alike, although they may share some similarities/traits/characteristics (obviously there are things that are the same which arouse suspicion about AS in the first place). My son isn't what I'd call a classic Aspie, going by the various books, etc, and that's something that various professionals that have got to know him have commented on. For example, R eye contact can be non-existent to variable, he has a good sense of humour at times, doesn't alwas line things up, doesn't necessarily like order, etc. In other words, he doesn't tick every box. However, that doesn't mean he doesn't have AS or is't a full or proper Aspie. I therefore wonder if that can give cause for self-doubt in the case of one or two posters on this thread? C.

Hi Don't know what to say really, other than I hope you're right. It's so difficult to get the ball rolling in order to be assessed, and even more difficult (I say difficult, but mean it's a time consuming and emotionally draining experience) for a diagnosis to be reached. You owe it to yourself to be honest and I don't know you obviously, but wonder if there's a combination of self-doubt, panic, etc setting in. If that is the case, it's going to be difficult for you to progress with this (or certainly that's my guess). The other side of the coin is that whilst I think people can hide/conceal certain traits/characteristics, there are some things that cannot be hidden, and so I hope the right decision is reached as to whether or not you have AS. Really, you owe it to yourself to be honest with yourself as well as everyone else - just tell it like it is, and hopefully the specialist/s will make the right decision. At the risk of sounding really patronising, condescending, insulting, etc etc, can someone with AS be in the position to self-assess, and know with absolute surety? I think to some degree that may be possible, but ultimately it's best to rely on a team effort which includes experts (though, they don't always get things right). Best wishes. Caroline.

Hi Definitely Roy Cropper from Coronation Street and maybe Sherlock Holmes. C.

Hi I think sexual preference/orientation is largely irrelevant. My ex boss was gay and seemed to want to talk about it endlessly (she discovered she was gay after having been married for years and after having had 2 daughters), presumably because it was something she was still battling with. I personally don't feel that sexuality defines anyone's personality. I think it's sad that individuals who are openly gay may be ridiculed, etc - I think that says much more about those individuals. On another note, I personally feel that facebook and the like pose potential issues for individuals who are perhaps inclined to be open with personal information, etc. Sadly, there have been lots of reports about bullying, etc etc. Whilst I think times have changed regarding how gay individuals are viewed, sex before marriage, unmarried mothers, etc over the years, ignorance still exists in some quarters, so please be very careful about whom you confide in about personal matters (same applies to everyone). PS - although not without problems, glad you've got some inner peace. Caroline.

Hi This isn't unusual. For a long time my son's behaviour was much worse at home than in school. Admittedly, his behaviour/characteristics in school were noted as not being quite what one would expect. Nevertheless, I did feel for a long time that I was constantly battling to get the school to be forthright to healthcare professionals about how kiddo was presenting. Now that's he's 10, it really is very obvious! I'm a great believer in saying that 'time will tell' - because it will! What tends to happen (as widely documented by psychiatrists, etc) is that a child can hold it together whilst in a certain environment e.g. school because it tends to be much more structed than at home, for example (e.g. bell rings, kids line up and go into class, etc). There's also an element of doing what the other kids do. Often what happens is that kids will vent once at home the stresses of the day. Although it's helpful to have background reports etc from school backing things up, parents should views should not be dismissed and the specialist/s concerned should know that kids can present differently in different settings. Best wishes. Caroline.

HI At the risk of being extremely blunt, I don't think its unreasonable to seek the opinion of a child's primary carer that's presumably spent a great deal of time with the child over the years (i.e. infancy, toddlerhood, etc etc). It's only through having spent time with a child day-in-day-out that one gets to know any idiosyncrasies, odd behaviours, etc. Although I'm married to my son's father, my hubby didn't seem to notice to the extent that I did the behavioural issues and odd behaviour, etc, and so I think it would have been incredibly difficult if we'd disagreed about whether we felt there was an issue or not (mainly because I feel that it's understandably so difficult for a child to be assessed and diagnosed anyway, that disagreeing parents could grind that process to a halt). For what it's worth, I do think you should have been consulted and asked for your viewpoint, but do think the primary carer's views should be considered in the first instance for the aforementioned reasons. Best wishes. C.

Hi My son's been having a particularly tough time over the past few weeks, particularly prior to Christmas e.g. did a runner from school resulting in police looking for him, etc etc. Anyhow, he's been going to a local judo club which is specifically for ASD kids for about 1.5 years. He loves interacting with the older boys, but has always had problems working with younger kids (he just doesn't like them, and I also think he fears he may hurt them i.e. for years he's been taught to be gentle, etc etc, but he's a big strapping lad for his age). Christmas week he went to judo and was paired with a younger kid and he snapped - he refused to work with him and was extremely rude to the coach. Hubby told me that the coach gave him a good talking to in front of the group about his attitude and moods and basically told him that there were plenty of other kids on the waiting list should he decide not to come back (R did say he wasn't going back). Anyhow, I spoke with coach a few days ago to say that kiddo finds this time of year tough because of excitement, change in routine, etc and ask if there was anything we could do collectively to short term to help him. By her response, I've been left feeling pretty let down. She basically said that kiddo has an attitude and has lost interest, was unenthusiastic and has a problem working with all the kids. I did say that I disagreed with her, that kiddo appears to be unenthusiastic, but nevertheless he enjoys going, it's good for him, and yes although he doesn't like working with younger kids, the younger kid concerned is rather over-zealous (leaving R with bruises week-after-week). I felt coach was labelling me as a soft touch parent who was pandering to kiddo, whereas I actually feel that a one-size fits-all approach isn't going to work for them all (it's a special needs group after all!!!) and that it was best for us to work together to help kiddo continue with judo (he's earned 5 belts so far, and is proud as punch with that achievement). Feel really let down that she's just there to make a quick buck out of whoever (she reminded me that there are other kids on the waiting list)! I'm in two minds whether to speak to the local autistic society that set up this arrangement. Just feel really miffed for kiddo that someone else is ready to give up on him. Unfortunately, we haven't been blessed with a little angel that does everything he's told, etc etc - instead, I've been blessed (I do mean that - he can be a lovely kid) with a child that really struggles with authority, controlling his temper, etc etc. I thought this was the one place that kiddo would be given some understanding, but fear that the coach is keen to howf him out and replace him with an easier customer! Don't get me wrong, kiddo needs to learn that it's not okay to be disrespectful, non-compliant, etc etc, but he needs adults to stick with him (where most have given up!!!) and give him boundaries, discipline, consequences, etc etc, but allow him the chance. Sorry, that's a bit of a story. What do you guys think? Caroline.

Hi Don't think there's an easy answer. My son is 10 now, but when he was much younger he used to behave abominably at soft play areas, parties, parks, etc. Clearly, kiddo struggled to cope, however, I felt that if I took the easy option and simply didn't take him to such places (subject him to such environments), then he was never going to learn how to cope with them - but rather, there was potential for him to gain enjoyment like most other kids his age. I used to have to force myself to take him (his behaviour used to draw attention to us, which I used to hate) and although it took around 8/9 months, it was something he was able to learn how to behave with guidance. Same used to apply to eating out etc. It's been a massive learning curve, and by no means easy. I think it's difficult getting a balance between assessing what kiddo can manage (what is realistic/achievable), taking baby steps if necessary, as well as what's just too much (could potentially be very damaging). Is is possible for you to chat to him and establish what it is that he finds difficult and then work out a plan of action? Might be worth breaking him in gently by: - to start with eating out in restaurants at quiet times (so there's a few people around, but so it's not too noisy, busy, etc (sensory overload) where his favourite food is available - specifically requesting to be located in a quieter area - allow him to choose a friend (if he has one) or take something with him that will help distract him or keep him focussed e.g. ipod, PSP, etc - set expectations as well as an action plan e.g. stay for however long, if it gets noisey/too busy we can sit outside, sit in car, etc etc - perhaps a clumsy analogy, but I try to encourage my son to taste food that he wouldn't normally eat and he now knows that at worst if he doesn't like it, he can spit it out and take a drink of water. If there's a 'get out' plan then that can sometimes provide reassurance to try something that's tricky as they know how they can get out of that situation if they can't cope I obviously don't know how your son is affected by AS or anything else about him really, but could it be that things are particularly difficult for him at this time of year, and/or things are worsened because hormones are kicking in? Guess all of that needs to be taken into account. Best wishes. Caroline.

Hi I'd be completely upfront and say the your current specialist that you feel the diagnosis is wrong and state why. That way, you're more likely to prompt a well reasoned/considered response, which may then put your mind at rest and/or, at the very least give you an opportunity to state why you don't feel ADHD is right. Professionals can and do get it wrong at times - we were passed from pillar to post before seeing someone who really knew what she was talking about (who didn't just agree for the sake of it, but rather, that was her area of specific expertise). If you're upfront, you give the doctor the opportunity to review things. If it's still a 'no', then tell him/her outright that you'll be seeking a second opinion. Be aware that colleagues may refuse to re-assess for political reasons, and so things would very much depend upon how the dept is structured. I was in a situation where I felt my son was being passed from pillar to post with no one willing to make a decision, or anyone that could in fact engage my son long enough to assess him. I told the Paed outright how I felt, but got nowhere. I then called the dept head's secretary explaining the situation and asking to see another specialist. I did put noses out of joint, but ultimately my child was losing out on valuable help and support (also, as a parent, I was the one having to manage very difficult day-to-day situations, and wasn't able to clock on at 9 'til 5). Best wishes. Caroline.

Hi I'm NT and don't like people in my house. Sounds good that your landlord wants to refurbish the place. Just be aware that he might try and increase the rent as a result. If he does proceed with this, could it be arranged to be done when you're on holiday (or staying with relatives, etc)? Best wishes. C.

Hi There are a whole lot of factors that make up the label of ADHD, for example, impulsitivity, hyperactivity, poor concentration, etc etc. My son has been assessed 3 times by CAMHS (at their request), but has apparently just fallen short of a formal diagnosis. Strangely lego was one example that I cited whereby kiddo was able to concentrate for a relatively long period of time. I think part of it is because it interests kiddo and he is therefore able to focus his attention onto it with less effort than normal perhaps. I think in short, it doesn't mean that there is an incorrect diagnosis, given that there are other factors that make up an ADHD diagnosis.

What is starting to worry me is that if kiddo gets into the habit of running away, police called, etc etc. that it won't actually teach him a lesson even with usual school/home sanctions. If he does this again, I'm actually wondering whether it's worth not reacting at all i.e. he actually got quite a lot of attention, etc. The gamble obviously is his safety, but my hope would be that he would go back or head home of his own accord like he did.