cmuir

Everyone (NTs and people with ASDs) will experience varying degrees of hardship, disappointment, upset, etc etc throughout the course of the lives whether it be related to work, relationships, etc etc. I wish there were a manual to assist parents bringing up ASDs kids about about to go into adulthood, but there isn't. I think all you can do is guide and advise, be there when you need to (and let your son know that) and back off when you need to – it is confusing and knowing how much or how little parent intervention is a difficult one to gauge. Sometimes, I've made the mistake of looking too far ahead and become bogged down and depressed by it all. I think it's important to discuss. identify, and address issues which may arise from having an ASD - outlook has a lot to do with it, but it is a disorder and there are positives, but it poses obvious difficulties/issues, particularly when it comes to social interaction, relationships, etc. Best wishes C

Hi You've had a very close shave and thankfully you're still in one piece to tell the tale. I think you know that now and hopefully the feelings you had will resurface if you're ever in a similar situation again. The key is to learn from our mistakes (we all make them!). Caroline.

Hi I'm in Scotland too. What you've said rings bells in my son's first year or two at school. Thankfully, things have settled a bit now that he has a high level of support. Guess there's a few questions that need answered first – has your daughter been seen by an educational psychologist? Does she has an IEP or a CSP? Does she have any support in the classroom? If not, it sounds very mucgh like the school have failed even at a very basic level to acknowledge, identify and then meet your daughter's needs – and so the aforementioned needs to be done. In addition, the Head has not followed procedure in phoning you to sort things out – a child can only be excluded if they are deemed to be a health and safety risk to others, and they are required to notify you formally in writing. Enquire are very good: http://enquire.org.uk/ They are a Scottish advice service for children in education that has additional support needs.

Very well done. Caroline.

Hi My son is undergoing tests for something and I know that compliance, etc is going to be a big issue. I gave them a call and explained the situation and asked if they could advise what to expect so that I could prepare him. When we attended, it meant we weren't completely in the dark. Give them a call and explain the situation. Best wishes. C.

H I know this is something that you've posted on before and my advice remains the same (I'm in the same boat) - you really do need to seek medical advice. Heavy blood loss can leave you feeling extremely lethargic not to mention cramps, etc. If you go to your doctor s/he can check and see whether you're anaemic and will likely take a blood sample (if you are anaemic, it's not just when it's your time of the month, it's all the time until resolved), and if necessary prescribe iron tablets. In addition, it may be they'll recommend medication designed to lighten and maybe even further down the line, suggest surgery. However, if it is a big problem that is affecting your life, you really should go to your GP. C.

Hi Not sure how to interpret your post, but I have had some problems with my vision which have been going on for around a year. I've attended several appointments, tests, etc, but no one actually gave any reasons/answers despite tests highlighting issues with my vision. Finally, I decided to see a specialist and was told that I have a degenerative eye disease. Whilst, I knew there was an issue, I have to say the news came as a shock as it will be life-changing (will affect my ability to drive, work, pay mortgage, etc etc). However, in a strange sort of way, I now know what I'm dealing with (it's the not knowing that can drive you nuts, especially when you know something isn't quite right!).

Hi Should you have to re-apply or cover more questions, thought this might be helpful... I applied and got DLA for my son when he was 4 pre-AS diagnosis. I can honestly say that I filled out the form accurately without over embelishing anything - I didn't need to! We were successful first-time. The key is to sit down and consider 'a day in the life' from getting kiddo up in the morning, washing, dressing, eating, toileting, sleeping, etc. Also consider health and safety issues, stranger danger, road awareness, general awareness of dangerous situations e.g. climbing, kitchen (cooker, iron, etc). Think about whether kiddo will go to bed and settle easily or not and whether he sleeps right through or whether he gets up at 3am demanding a bath! The aim of a DLA form is to ascertain whether or not your child is harder work to look after than a neurotypical child of the same age. It's also worth speaking to e.g. nursery/school/head teacher, consultant, etc and ask if they'd mind if they were contacted for DLA claim. Lastly, a child does not have to have a diagnosis to qualify for DLA. Remember and keep a photocopy of your form. I don't know how the land lies now with all the cutbacks, etc, but it's certainly worth a try. C.

Hi Lisa Not followed this post for a few days and just been reading bits of it (not deliberately trying to pick on Baddad). I'm in somewhat a similar situation to yourself in that during the course of the diagnostic process of my son, it was suggested more than once by more than one specialist that my husband showed AS traits/characteristics (that was 5 years ago). My husband has chosen not to be assessed, and I have to respect his decision. Hubby and I have been married for 17 years. Granted, we're like chalk and cheese in a lot of ways and have had lots of peaks and troughs along the way, but somehow I think our marriage works because we give each other space and acceptance. However, although I cannot put into words why, I would like to know for sure if my husband has AS or not and it's something that I think about a lot. I think I would perhaps be a bit more tolerant and understanding or certain issues that have arisen. Again, I think it's a very personal choice whether your husband is assessed and wish you both luck in whatever you choose to do. Caroline.

I'm not saying behaviours can't be helped nor am I talking about comorbidity. In my experience of getting to know both ASD children and adults, I've found that there can be consistency as well as great inconsistency in things that they can and cannot cope with, and there can be various reasons for that (same can be said for NTs). Trying to assess generally whether someone has changed through circumstances/inclination is extremely difficult/impossible to do because of that.

Hi My son's consultant is a Professor who specialises in neurodisability which includes autism. Within her field she is highly respected and is proactive in research etc. She advised that there are a lot of instances whereby after the diagnosis of a child, that the father of that child is recognised to have an ASD. There are a number of reasons for this: mainly because 20/30/40+ years ago, a lot less was known about ASDs and so few were diagnosed; it's only after going through the diagnostic process with the child, that families realise the same traits and characteristics are recognised in the father. It is also recognised that ASDs can run in families and so there can be a clear genetic link (but not always). I note one post suggests you establish whether your husband has changed ... whilst I can see the train of thought behind that, I'm not sure that would make things any clearer for one of the aforementioned reasons (some families don't realise that e.g. the father has an ASD until the child has been diagnosed, also, courting, getting married, having children, can bring about change all the time and sometimes make traits more obvious thus resulting in sudden change when one isn't coping as well as normal). In short, it is possible that your husband has AS based on the fact that there can be a genetic link. The only way to find out is for him to be assessed. Best wishes. Caroline.

Hi I think you only have to read the press to note that scientists/doctors says X, Y and Z and then the following day there's something else is reported a day or so later which turns that on it's head. It's very difficult to know one way or another what will reduce behavioural problems, but I think the key is a balanced diet which includes fruit, vegetables, meat, fish, etc. That can be very difficult for a child on the spectrum. I won't lie and say 'my son doesn't get sweets, fizzy juice, etc', but what I will say is that he doesn't get those things on a regular basis, in fact, he loves fruit and drinks mainly water. Within the locality where I work there are a number of grocer shops which sell some of less common fruit – I've found R is more than happy to try starfruit, dragon fruit, rambatans, etc. Going back to your question, I think it's very difficult to avoid artificial colourings and preservatives, etc, but cutting down or out can only be a good thing.

Hi I think the key is to not look. Irrespective of whether we're talking about ASD or NT adults, in my experience, when you're least expecting to meet someone special that's when you usually do. It's important that you be yourself (don't try to be something/someone that you're not). Not sure what you're interests are, but people usually meet like-minded others at events/locations such as galleries, bowling, cinema, etc. I think it's also important to be clear about what you're looking for in a relationship. I had a friend who used to gobsmack me – we'd go clubbing, she'd hock up with some bloke and disappear for the night, come back the next day and wonder why there would be no meaningful relationship. Perhaps going to uni will offer some kind of social interaction that you'll become comfortable with. Best wishes. Caroline

Hi Difficult one. If your son does in fact have Aspergers, but hasn't been professionally diagnosed due to reluctance to commit on the professionals part (for 'political' reasons), that's a great shame in my view. It took a couple of years for my son to be diagnosed and some professionals were emphatic that he didn't have Aspergers, some sat on the fence and some were sure he did have AS. I'm not expert, but going from what I'd picked up about AS I as sure I could be that my son could have AS and pushed for the professionals to commit one way or another (my son's behaviour was far from normal and I wanted answers). Eventually, by sheer chance the name of a well respected NHS ASD specialist popped up and I asked that she see my son. She read all background reports, met R and carried out an ADOS before finally officially diagnosing him with AS. I firmly believe it made a massive difference to me (I was told by my GP and HV that clearly I wasn't coping being a first time mum and needed to stop working full-time – finger pointing of what?!) as I desperately wanted to be able to access support services for R that weren't available to us without a formal diagnosis. More importantly, I told R that he had AS a few years ago emphasising positive aspects, but also explaining why he finds some things difficult, etc. I firmly believe that being able to explain (not excuse) issues has helped him. I have to be honest though, had R not been diagnosed, I wouldn't have told him anything. In Scotland, Educational Psychologists don't diagnose children, but rather observe and highlight that there may be specific issues. It's specifically the role of a specialist consultant who usually enlist other professionals, e.g. SALT, OT, etc and also seek reports from teachers, HTs, etc. It's very much a team effort, hence the reason that a diagosis can take so long. Indeed, whilst I found the diagnostic process extremely emotionally draining and frustrating at times, I appreciate the importance of a thorough assessment and the right diagnosis. Is it possible that you could gets the wheels in motion and have your son properly assessed. In which case, it's likely you'd have to explain why (also, given that your son is 18, the decision would ultimately be his). Best wishes. Caroline

I don't think it's that black and white. leeds_demon, I think in the majority of cases it can take a long time for someone to receive a diagnosis. That could be for a number of reasons e.g. it's a team effort (i.e. relies on the expertise of consultant, SALT, OT, background reports from various individuals, family history, observations, etc). It's a long process which no one takes lightly – labelling someone can have a profound effect on that person's life (some view it as a positive/others as a negative). That's not to say that all professionals get everything right – I'm sure there are a small number who get it wrong and also, as Baddad has gone as far as to say, that some are quicker than others particularly when there a cheque involved (again, a smallminority). I don't know your history or anything about you really, but your doubts may or may not be valid (it's impossible to say). It could be you are correct, but could it be that you're struggling to accept the diagnosis/label? I guess I'd be interested to know whether in your pre-school/school years if anyone picked up anything, what your parents/siblings/family members think, whether you've been seen by a number of professionals over the years or a short time, etc etc. Sorry, I realise that doesn't give you any definitive answers and raises lots of questions. The other thing that I would say is that my son has AS and he's definitively not classic. He didn't tick every box and still doesn't. However, over the years any doubts I may had had have been dispelled – it's become more and more obvious, mainly because more and more is being expected of kiddo academically and socially which is a real struggle for him. So, on the basis of not ticking every box, it's very difficult to say one way or another. You may have done this already, but have you raised your doubts with your Psychologist?

Hi I note you've said 'fast acting – is there a slow release melatonin? My son has great difficulty unwinding and despite establishing a bedtime routine there are still sleep issues, however, they've lessened a great deal. Perhaps you've been through this already, but if not, winding down time straight after dinner is important i.e. avoiding physical activity, bathtime, story, very light supper, etc. Environmental changes i.e. dark curtains, soft lighting, perhaps even introduce an audio story, etc might help. Also, I've been rudely awakened by my son playing on his Xbox at 3am numerous times – in those instances, I've insisted kiddo switch it off and get back into bed (we've agreed not before 7am as a compromise!). There's no easy solution, but winding down time may help. Best wishes.

Hi No, but I was advised every now and again e.g. school holidays to give kiddo a melatonin break for a week or 2 (at most) to check whether kiddo still benefits from it. My understanding is that it takes a few days to kick in and so I wonder whether weedays only is enough time to establish effectiveness (I could be wrong, but I have a vague recollection of being told this). Caroline

Hi This topic has cropped up before and bought a couple of books. Bought Let's Talk About Sex and in honesty, I felt for my son's age (my son is aged 9 and has started puberty – his school has just started teaching sex education), it was far too detailed. Looking at the illustrations, I could actually feel myself blushing! Just think it's for kids a bit older (perhaps 12/13+). So that's one's being kept in my bottom drawer for a bit anyway. I bought another book called What's Happening to Me – there are boy and girl versions. I think it's a super book. I think it's spot on for my son's age group and gives a very good introduction to puberty, physical and emotional changes, with a brief introduction to sex (without being too explicit). I think a lot depends upon the child's age and ability to understand. Best wishes. Caroline.

Hi I think that sometimes if one is specifically looking for something, then they're more likely to find or concur with their expectations or what it is their looking for in the first place. Perhaps a clumsy analogy, but I was watching a programme yesterday about a group of B&B owners (think it was called 3 in a bed). One couple owned a tutor B&B thaat was lovely – one couple couldn't fault it, another did – only because they were on a mission looking for faults (the object of the 'game' meant that some were more likely to look for faults and nit pick). I'm not wishing to be critical of your experiment, but if you're observing other people and they notice, they're more likely to stare at you. I'm not sure that your 'findings' are accurate. Best wishes. Caroline.

Hi My son is 9 and is extremely challenging not just at home, but school and social work respite club (which SW have pulled the plug on because of kiddo's behaviour!!!). I think that some parents are very lucky in that their kids are perhaps more placid than others (that's not to say they don't have difficulties) and as a result fundamentally misunderstand how difficult it is to parent a challenging child, and so there can be a tendency to ask questions like how do you react, etc etc. (or even point the finger) - frustrating when you already discipline, are consistent, and have the certificate from various parenting programmes! The only thing you can do is keep doing what you're doing – continue to discipline, let kiddo know there are consequences, praise good behaviour, set boundaries, etc etc (which you're already doing). There are times when my son completely loses control to the point that he puts himself and others in danger (indeed, I've received calls from school, etc to collect him are a result). Whilst there are times when I've been able to intervene and make myself heard, equally there are times when restraining (now very difficult given kiddo is the same height and size as me, despite the fact he's only 9!) is possible, but sometimes I've found I've had no choice but to stand back and let kiddo get it out of his system. Afterwards he's remorseful, says he can't help it, etc etc – needless to say, kiddo sorts out of the aftermath (any mess/damage!) and there are sanctions imposed i.e. loss of xbox, etc. Interestingly a leading ASD Psychologist told me that sadly there are some kids whom despite having firm boundaries, etc, just 'don't get it' and sadly those are the few that usually benefit from residential schooling/care. I reached the stage where CAMHS are involved (again!) and it's likely that medication will be on the cards. Don't know if that's an option. Also, although my son is quite young, there are obvious physical signs that he's going through puberty, which is an added complication. Guess all I can say is hang in there and keep being consistent, etc. Best wishes.

My son is exactly the same. The reasons for this are well documented – kids holding it together in school, trying to be normal/fit in, but once home can't contain themselves any longer and 'vent'.

Hi Difficult one with no easy answer. I'm aware that my son behaves worse with some individuals more than others – indeed, most kids behave worse with their parents. During visits GP surgery, hospital, etc R would become extremely anxious and frankly present as a very badly behaved boy. However, his consultant said (with I agree with completely) that his behaviour is attributable to sheer anxiety which is not uncommon amongst ASD kids. Chuldren can present very differently in different situations and with different people. Also, if I had a penny for how many times e.g. a neighbour would say 'oh we've all got our funnily ways', 'we're all on the spectrum you know', 'he seems fine to me', etc etc. However, appearances can be deceptive and time does tell. I'm not for a second suggesting you're wrong (sadly the mother may have manufactured the situation - though, I'd like to think such people are in the minority). lastly, most diagnoses take a long time (years) and it's usually a multi-agency collaborative effort. Generally most Consultants etc shy away from labelling a child without being as certain as they can be that the child does in fact have an ASD (they usually refer to school reports, home visits, SALT reports, ADOS assessments, etc etc). I guess if you're as sure as you can be that the diagnosis is wrong, it would be worth speaking with kiddo's Headteacher, teacher, Educational Psychologist, etc (though I should say they're not experts) and then see a specialist. Perhaps an ADOS and SALT assessment may be worthwhile (looking at body language, speech, eye contact, verbal reciprocacy, imagination, etc). I would like to add though that my son went through many assessment over a long period – specialists don't always get things right and so the more 'evidence' collated over a period of time can help. I'm a big believer that time will tell. Some people had doubts about my son, however, as time has went on, any doubts have been dispelled – there's no doubt now! I think it's a real compliment that kiddo behaves better with you and your partner. That certainly shows he's comfortable, though I'd be hesistant to conclude that that means (coupled with the aforementioned points) he doesn't have an ASD. I think the answer is to give it time. Best wishes Caroline.

Hi Absolutely – I don't doubt that teachers work had and some more than most, however, I guess I was clumsily trying to make the point that teachers generally have kids from around 8.45 until 3.30pm or thereabouts. Whilst she may be frustrated, etc, she is paid to do a job in a professional manner whilst identifying and meeting the needs of the child. No easy task and it really should be a team effort i.e. Ed Psych, SFL Teacher, etc. Best wishes.

Hi Oh poor her - she clocks on at 9 and finishes before 5pm. Parenting an ASD child is a 24/7 job that can be round the clock. I think the teacher has been utterly unprofessional – yes, she might have some frustration, etc, but it is her job to map out a plan for moving forward (and be positive). In my son's case, it's taken a long time but I now feel the HT understands R very well. However, the school Support for Learning Teacher has her head in the sand. Frankly, I don't think she has a clue. R's class teacher is rather old school and whilst that has it's down side, it can also be a positive thing too. I have to say, I find mainstream schooling very difficult and remain unconvinced that for kids that function at a particular level, I think specialist provision/expertise would make a difference. I think moving forward with your son, it might be an idea to have a chat with the HT. I'd be inclined to tell her how you found the class teacher and advise that whilst you understand and perhaps share her thoughts to some degree, you feel it's extremely important to work together in a positive and constructive way. Best wishes.

Hi Not sure what to suggest. Don't know if it's happened once or more than that, but I'm guessing that he would have got quite a reaction from staff and classmates (is he in a mainstream or special school?). Guess there's a whole host of things to consider. Can you think of anything that could have triggered this i.e. stress, exams, recent sex education class, etc? Also, not sure how high functioning your son is, but it might be worth being direct with him (you've probably done that already) and stipulating that it's not acceptable (privacy of own room only, etc) and covering possible consequences. Again, don't know enough, but could be worth referring to CAMHS for their input (though I think CAMHS are a bit 'hit and miss'). Sorry, not much help. I seem to recall something similar being covered in the past – perhaps someone else might recall a previous thread. Best wiehes.