cmuir

I think the focus is always on checklists and how many boxes can be ticked (yet everyone is different – some things will apply, other things won't), not nust in terms of professionals, but people's perception of what AS is and how one should act, etc. You'e pointed out things that aren't applicable to you, but equally there may be some things are are? I cannot comment on whether you do or don't have AS (because I'm no expert and I don't know you personally), but I do wonder whether awareness comes into the equation i.e. how aware someone with AS is that they have certain traits. (Hope that doesn't offend (not meaning to), but I've been told that I have certain habits/traits (I'm NT), which I haven't previously recognised).

Hi I'm absolutely stunned that a GP would advise you to go online and purchase melatonin. I'd make a formal complaint on the grounds that under shared care protocol between Paed/GP (irrespective of discharge), that a need for it has been identified and should continue (unless, of course, Paed is now saying otherwise). Sorry, but don't know of any reputable websites. Caroline.

Hi I cannot comment on what it's like to have AS, but can comment given my observations of my son and others who do. The only point that I can make is that although professionals may be use or refer to checklists, is that not everyone ticks every body. My son's eye contact, for example, can go from being non existent to very good (it's variable), and he can have quite a good sense of humour and can usually pick up and understand sarcasm, etc. Difficult to know whether you do have AS, but usually formal diagnoses aren't given lightly and it is normally a lengthy process that involves a number of specialists who may well speak with relatives, etc. Just as some professionals perhaps don't diagnose individuals who have AS, that's not to say that it doesn't work the other way i.e. some may be diagnosed incorrectly, but for the aforementioned reasons, I would guess that's a very rare occurrence. Could it be that you don't feel you have AS because you've developed very good coping/management strategies for things to the point that it's second nature and no longer seems like an issue? Could it be you have doubts because of your perception of AS and general awareness? Hope that doesn't come across as critical (certainly no meant that way). Lastly, we all (NTs, Aspies - everyone!) has little idiosyncrasies and I guess it can be difficult to distinguish between what may be AS-related and what's just regular personality-related (does that make sense?). Best wishes. C.

Hi When my son was younger, school trips used to fill me with dread. I don't think there's any quick fix or easy answer, and all kids are different. For us though, I found that social stories helped. I used to find out as much as I could and draw little stick men, etc and illustrate what the events were going to be. R also had a full-time LA, which helped a lot too. Admittedly, there was one occasion when I kept him off school as I felt it would be too stressful. However, when I think how kiddo was when he was e.g. 4.5 to his he is now (10), he's made masses of progress because I felt that by avoiding difficult situations, R was never going to be able to overcome or cope with them. Certainly hasn't been easy (and still isn't!), but I think by giving firm boundaries/consequences/rules and by preparing kiddo as much as possible, I think it's helped massively. Sadly, although I think ASD kids should have extra support, it doesn't always work out that way. I also think that because of staff shortages that the onus can be put on parents to accompany the child. Not saying that parents shouldn't, but I think it can get difficult because it's often an easy option for the school (and the child) and it can become an expectation which doesn't resolve ztaffing/support issues. I found that my son behaved really badly whenever I was present in school, and I felt it was more beneficial to kiddo if I stayed away (it became confusing to R (and me!) about who should dish out the boundaries, etc in school). Hope that makes sense. Best wishes. Caroline.

Hi I read an article on the subject and must admit to studying my son's face closely and thinking hmmmmmmnnnnnn – he doesn't have a very big gap betwen his nose and lips, etc. Trying to rationalise it, I think that it's not a definitive means of testing for ASDs, but rather a study that so far has shown a high instance of similar facial features. Caroline.

Hi Not sure how to respond this, but I don't think it's wrong to think or find someone attractive (I think it's wrong to do something about it!). Could it be that the girl was implying that she thinks you're attractedto a married man, rather than in love, etc etc? Either way, I must confess that I would likely not be best pleased if someone wrongly assumed I was attracted to someone – I'd likely laugh nervously and feel embarassed as well as self-conscious i.e. wonder about what kind of signals I was sending out inadvertently. In some instances it can be best to let things go. Though I can understand how you feel, sometimes if one is deemed to protest too much, it can raise the suspicions of those that have overactive imaginations! Best wishes. Caroline.

Hi I know that there can be a genetic link in families whereby e.g. a father and son both have AS. I also know that it is not unusual for someone on the spectrum to have a comorbid condition e.g. bi-polar. However, I don't know about Bipolar and AS individually being genetically connected. C.

Hi I think the problem with mainstream schools is that not everyone makes allowances and provides the right level of support (if any). My son is in a mainstream school and occasionally we have home visits from an Ed Psych, who concludes after 20 minutes that kiddo is doing great. 'Oh really' is my response, before continuing to outline the fact that he vents his frustration and anxiety at home almost daily. In such cases, I don't think anyone can conclude that a child is managing mainstream school. I think if your son is struggling to the point that he is struggling with not just homework, but generally the school environment which he brings home, then it's a problem. Year-on-year more and more are expected of kids in terms of academic achievements but also social ones and so it's about having an Ed Psych/school be open and honest in recognising, acknowledging and doing something about that. Time tells and so if your son isn't managing a mainstream environment it's only going to become more and more obvious. If it is just homework however, then I think it's worth setting smaller more manageable targets as homework can become counter-productive if it's affecting his confidence and self-eseteem. Definitely worth flagging up with the school and seeing if a compromise can be reached. Best wishes. Caroline.

Hi Gosh, don't know what to say or suggest given how messy things are with CAMHS. The best thing that you can do is try and hold it together as well as you can – be articulate, calm, dignified, and continue to present a good case. My interactions with CAMHS haven't been easy and I used to come out of appointments feeling crushed. I realised pretty quickly though that I wasn't to blame, that only I knew what was really happening in terms of my son's behaviours and traits. Because I kept a diary (which I thought was an insightful and helpful thing to do in order to record accurate accounts for specialists), CAMHS told me I was being negative. Must confess to becoming cross advising that one doesn't go to your doctor to tell them that you feel great, but rather identify issues and seek a cure. In such instances, I felt there was no way back, in that this person fundamentally misunderstood me, but more importantly, failed to engage with my son. I was able to insist on seeing someone else. I wonder if this would be possible for you to do – it is so important to start with a fresh slate whereby you feel you can trust CAMHS and equally they'll allow you the time to show that you're not suffering from MBP. Very best wishes. Caroline.

Hi I've experienced being passed from pillar to post and finding professionals unwilling to actually make a definitive decision which resulted in not being able to access services, etc. I also know of someone else who was in the sameboat with a child in my son's class, who also saw same professionals etc. Persistence is the key. Point out how professionals bang on about early intervention, etc, but in the absence of a thorough assessment you're not being able to access services for your child, which is damaging. I also found that I was unable to function, in that the situation was all consuming – I felt I wasn't being listened to, my son wasn't being assessed, etc and we were getting nowhere despite having 19 reports and being passed continually form pillar to post. More importantly, this was all damaging to my son. In hindsight I can completely understand why it can take time for a child to be assessed as it's usually a team effort i.e. SALT, OT, etc, but there comes a point when everything starts to stack up. It sounds like you're in a similar situation in that CAMHS are saying yes there are AS traits, but no one is actually willing to investigate further. All I can say is persevere! I think in some ways, it's become more and more obvious that my son has AS. It's also worth seaking with the school to identify/acknowledge issues that kiddo has. An Ed Psych should also be appointed. In school, a child should receive help/support with or without a diagnosis (though a label does seem to carry a bit more weight – how much, is another story!). Caroline.

Hi I recall how my son was at 21 months – he only said about 3 or 4 words, didn't look at people when being spoken to, required little sleep, etc. I didn't think too much of it until he was a little older. I remember R would count up to 20 and then he seemed to regress. Like you, I was in regular contact with our HV and GP who were frankly dismissive (I was told that I should stop working full-time, which spoke volumes!). By the age of 3, I was at my witsend – I knew something wasn't right and it wasn't because I was a first time stressed out mum. I contacted HV and GP again making a written complaint requesting that my concerns be taken seriously, etc. It was only then that the ball started rolling. R was assessed over a period of 1.5 before being diagnosed with AS. I recall the whole thing being an emotional rollercoaster and frankly was all consuming. During the process we saw Paeds who emphatically said R didn't have AS. I'm no expert, but I felt they were very dismissive of behaviours, etc that I was reporting to them. Difficult for them to get a good picture in a clinic environment over space of 20 minutes. R was also seen by an OT, SALT, etc and they were weren't so dismissive. I trolled the net and everything kept coming back to the same thing – AS. I then kept a diary of things that struck me as being odd. I was given the name of an ASD specialist whom I phoned and literally begged to see. She agreed to see R, asked lots of questions carried out an ADOS, before diagnosing R with AS at the age of 4.5. It was a long process which relied on a number of specialists, and really only started at an age when issues start to become obvious (aged 3). I've given you a bit of my life story (sorry!), thought it might be helpful given the stage you're at. I think all you can do is keep in touch with your HV and GP who'll assess whether kiddo is meeting the expected milestones and take things from there. Best wishes. Caroline.

Hi One things that I would take issue with the school is about the fact that he's only in school for 2 hours because of staffing issues, under the guise that that's all he can cope with. I know the country is in a financial mess, but I can't help wonder if the school/LEA are taking the easy option. For as long as you're 'happy' (I know you're not) with the arrangement, they're happy to keep it going – meanwhile kiddo is losing on out an education. I strongly suspect that if your son were in an school environment where he is well supported, he'd stand a much better chance of coping. It could be that class sizes are too big for him and that he'd cope better in a school (special or unit) where class sizes were much smaller e.g. 6. For what it's worth I was asked for a word with the HT during my son's first hour in school, where I was told if his behaviour continued he had no future there. I was furious because I never wanted him in a mainstream school and my hands were tied – then to suddenly write him off without giving it a go was in my view wrong. After a frank discussion (reminding the HT that I forewarned staff, even providing reports, tips, strategies, etc), we seemed to turn a corner by working together. It was very difficult and there were lots of issues mainly with other parents, etc, but things have improved greatly since then (R is now nearly 10). With age/maturity and teaching they can learn ways of coping and dealing with difficult situations. In terms of what you're doing at home, all you can do is send out a clear message of what's expected of him in terms of his behaviour, accompanied with sanctions etc (already suggested by others). There are lots of times when it might feel like a fruitless tasks (i.e. doesn't seem to be sinking in) and things are likely to get worse before getting better. Also, in hindsight, I made the mistake of feeling guilty because I worked full-time; I'd try to do too much with R trying to make up quality time. In fact, what I was actually doing was overloading him. I found that 'simplest is best' i.e. instead of going to soft play, it was better going to the seaside. Social stories can help or comic strip stories by Carol Gray. ASD kids tend to pick up visual messages better than verbal ones and so employing the use of the stories might help. Hang in there. Hope things improve soon. Caroline. Just wanted to add that there are psychologists who acknowledge and attribute the fact that there can be a discrepancy between the way that a child can behave at home and in school to their ability to cope. In school, for example, a child may hold it together very well and display very few difficulties/issues/behaviours, yet at home, be extremely challenging. At home a child can feel familiar/safe/secure, but 'vent' like a pressure cooker the frustrations of the day. Other children 'vent' at the time i.e. in school. In either situation, this is why it's so important that the children is well supported.

Hi Sounds like a very familiar situation. Myself and school tried to team the boys up together in the hope that a bit of teamwork would distract them from snipping, etc. To some degree it worked, but I don't think their relationship is ever going to be great. Great that the school are acknowledging there is an issue. Problem is that it really is up to them to resolve. It's a difficult situation but they do have a duty of care to ensure that all kids in their care aren't being bullied, etc. Although it's very hard to deal with when kids bring their school baggage home, I guess in a way that it's good that school are seeing first-hand how it's affecting kiddo. Perhaps social stories might help covering feeling, how behaviour affects one another, etc to the class as a whole (that way not singling anyone out). Great that your son has 20 hours per week support, however, I would question whether school need to look at how your son is supported. They also need to look at how the other boy is supported as 5 hours may not be enough. Sadly, in my experience the reality is that although kids may be allocated X number of hours, if there are several kids in a class with difficulties, the LA tends to dish out time with them all and not exclusively with the one child that actually has the bulk of the hours. I think the ball really is in the school's court on this one. Good luck with your meeting. All you can do is convey how kiddo is affected at home by this. Caroline.

Hi I found that pester power can help. In other words, keep badgeringyour GP to get a referral. Once you get a referral, if for example the appointment is months away phone and ask for a cancellation appointment. Although that can speed things up, it can still be a long process. Generally, a team of specialists can be involved in assessing a child, e.g. SALT, OT, Paed, etc. I kept a diary and recording odd behaviours, for example, at Christmas, R wouldn't entertain wrapped up presents, he'd stack them up behind the dining room table (he'd happily open presents that weren't wrapped!), lining up things, insistence on routine, inability to cope at social gatherings, etc. Also, reports from school, etc can all help. All of these things can help. In the meantime, it may be worth speaking to your GP again and tell him about the thoughts that your brother has been having, and also outlining how the whole family are affected. With regards to school, even in the absence of a diagnosis, support should still be put in place – in reality though, a diagnosis can help a great deal. Your parents can ask the school for an Educational Psychologist to see him, but there may be a reluctance if he's calm and progressing in school. Pester power! Best wishes. Caroline

Hi Googled IEPs and found the following: An Individual Education Plan includes targets, provision, and outcomes. Targets: Each pupil's IEP sets targets for him/her to work towards. The targets are related to the pupil's particular difficulty (learning, communication, behavioural or sensory/physical disability). The targets set on an IEP should also be SMART (specific, measurable, attainable, realistic and time-related). Provision This details the nature of the extra support that the pupil will receive. This can include specialist teacher or teaching assistant support, working in a small group, alternative activities such as speech and language support, mentoring, life skills teaching, anger management etc. Outcomes The IEP should include a section showing the pupil's progress against his/her previous targets. I must confess to often coming away from my son's review meetings feeling utterfly frustrated. Staff have a tendency to want to talk solely about my son's achievements – all well and good, but by not acknowledging, identifying and addressing his difficulties, there's no benefit to him. In addition, when I've identified a gap, I've been told 'sorry, I won't be able to have anything in place just now, so it'll have to wait and go on the next IEP'. Guess what I'm trying to convey is that the reality doesn't always match expectations or what should happen. However, despite being frustrated, it's interesting to see what school staff identify as an issue along with an action plan, which also details progress. Best wishes. Caroline

Yes, sorry. I misread the post (just had an eye op and vision is quite poor! Quite right - ID are standard, but not electronic ones.

In Scotland they are not. Only those where there is a possibility of wandering off e.g. dementia patients. Caroline.

Hi At the risk of stirring things up, just wanted to point out that generally it's deemed okay to put a tag on pets e.g. cats and dogs who may wander off. I, therefore, don't think it's unreasonable at all in special circumstances to identify a child in some shape or form. I recall recently when my grandmother was admitted to hospital, hospital staff seeking my permission to put a tag on her – sadly, she had vascular dementia and was very confused and prone to wandering. I was pleased to give my permission, since I accept that the reality is that staff couldn't watch her 24/7). I think it's a very personal decision, and one specific to the child's dis/ability to, whether or not to have them wear a tag of some description (particularly a child who may be prone to wandering off and be unable to communicate with any adult who may find said child in distress). I think it's very much up to the parents to weigh up the risks/danger. Caroline.

Hi Okay, if the school don't want kiddo wearing a medical alert bracelet (for ID purposes i.e. wandering off, etc), then what will they do to ensure his safety whilst in their care? I would be inclined to turn this on it's head and put the onus on the school. For what it's worth, I think wearing a medic alert type bracelet (as long as there's no catches which might snag skin, etc) is not an unreasonable step if your child is prone to wandering off and his ability to communicate, etc is severely impaired. I do think it boils down to what the likelihood of that occurring during school hours is. Caroline.

Hi Don't know if anyone remembers TheNeil. Haven't seen any posts from him in a very long time, but he was an adult with AS who'd written a book called Wired-Up Wrong (Neil Shepherd). I really can't review it as I must have read it a good while ago and don't recall much. Agree that Send in the idiots is a great book! Caroline.

That seems strange saying that kiddo could grow out of it – no one, including professionals, have a crystal ball. For sure, I've found that my son has made excellent progress in certain areas, but not so in others. It's so difficult to determine. My son started school at 4.5 years old. I felt it best to try and see how he coped. Must say it was far from easy, but I felt there was nothing to be gained by holding him back a year. It's a very personal decision. I think you're doing the right thing by keeping your options open just now. Best wishes Caroline

Hi My understanding is that risperidone is a mood stabilising drug which can take up to 6 weeks to kick into effect (my son trialled it and I recall asking about it). Don't know how long your son has been on it, but perhaps a bit more time is required to see or the dosage needs to be revised. I'm no expert and so the best bet is to seek professional medical advice. Caroline.

Hi A diagnosis need not be present for a DLA claim (though, I'm sure it helps) – I auccessfully applied prior to my son receiving a formal diagnosis. For a claim to be successful, you need to cover specifics i.e. has no sense of danger, wanders off, will awaken at 3am and demand a bath, runs off, needs assistance with personal hygiene, needs assistance eating, etc etc. I don't want to put words in your mouth, but tackle it from the angle of a 'day in the life' - starting with waking up, washing, dressing, breakfast, etc etc and cover what the issues are. I was actually quite shocked once I sat down and put everything on paper just how difficult some things are (it's about showing that your child requires much more care than a child of the same age). I can't comment specifically on the mobility part (my son gets low rate, but high rate for care), but my guess would be to consider whether you can go shopping, get out of the car without kiddo running/wandering off, crossing roads, the act of walking (does kiddo tire easily), etc etc. Reports or endorsements are always helpful – ask H/teachers if they would mind if they were contacted/put something down on headed paper, Paediatrician's reports, etc etc. It may be necessary to appeal, however, a NAS member of staff once told me to be very careful of doing this, particularly if you're already in receipt of e.g. high rate care seeking a higher rate mobility (they may re-evaluate and reduce one component whilst increasing another). I know you've said you don't want to talk to anyone about these matters, but it can be really helpful to speak to a local organisation that specialises in helping parents with this sort of thing (I sought help first time around from a charity attached to our local Children's Hospital). Often, it's not until someone else asks questions which make you realise just how difficlt some aspects are. Regards Caroline.

Hi Baddad To some degree I share your concerns about how and by whom some individuals are 'diagnosed'. I think that there's a lot of ignorance about what ASDs are and how it affects individuals, etc and I feel that, for example, the way that NAS proactively backed and widely marketed Gary Mackinnon was wrong – I felt to the 'outside world' that it rather portrayed and generalised the disorder in the wrong way (much better to have educated people. Point is, I am concerned that people who have been diagnosed after thorough assessment by suitably qualified professionals may be stereotyped/tagged same as those whereby the diagnosis is questionable (e.g. in perhaps a minority of cases, have been diagnosis without thorough assessment). But (and it's a big 'but), there is always a starting point – i.e. some people go through life struggling and then suddenly wham/something registers, they read something (or a relative does) which describes them to a 'T' (remembering that in the cases of a lot of adults, the knowledge, expertise, etc simply wasn't out there X number of years ago). I did exactly that – I was at breaking point being written off as a stressed out first time mother that couldn't cope. Yet I knew with surety that something wasn't right. Not for a second suggesting that reading books, trolling the internet, etc suddenly made me an expert, but it gave me a starting point. This forum is a source of support and informaiton point for those who suspect thye or someone close to them may have an ASD. I would therefore hate to give those the impression that the absence of a diagnosis (NHS or private) invalidates their concerns, questions, etc etc), partciularly at a time when they're particularly desperate or vulnerable.

Hi I think that those that have an ASD inevitably face difficulties (as we all do to varying degrees) throughout their lives which are related to the disorder, and issues which are not (it can be difficult to separate). I think all one can do with e.g. a child/teenager, is be as open, honest, realistic and as unbiased as possible about both the negative and positive aspects of ASDs. My son is nearly 10 and there are times when he says he hates having AS, but I think he largely accepts that it's part and parcel of who he is. I've tried to explain that yes he may find X, Y and Z difficult, but issues are not insurmountable. I think a positive outlook is key, but as a parent, fully accept that it can be very difficult at times.