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Hi I'm soooooooooo glad!!! Dare say there are lots of others like me who work full-time and have a child with an ASD. I would love to go to support groups, etc but can't because there's not enough hours in the day. That's why this site is a godsend ? this is my only means of support. It's also good to put something back in, in terms of looking and replying to other posts which are from people that are in the same position that I was perhaps 6 months ago, etc. From a very relieved Caroline!

Caught me too! I've gone off ebay in favour of this site. C.

Hi Katie Grant makes reference in her follow-up article saying 'Unfortunately, this past week I have become something of a hate figure'. She can't have it both ways! She talks about freedom of speech, but is clearly miffed that she's been something of a hate figure. When you express an opinion about a subject which is likely to cause controversy then of course you're going to p**s a few people off ? especially when you haven't a clue what you're talking about! C.

Hi Update from Katie Grant, see: http://www.timesonline.co.uk/article/0,,2090-2188147.html I sent the editor a straight-talking email about the original feature. It was strongly worded. A colleague of mine has just advised me that my comments were published. Fantastic! Just shows it pays to complain and that sometimes you do get heard. Caroline

Hi I applied for DLA and was successful even thought my son did not have a diagnosis at that time. I photocopied reports which said 'somewhere on the spectrum', but that was it. A few weeks later (just 05/05/06 we got a diagnosis). I had numerous other reports as well as character references, etc from nursery manager, care worker etc to back me up. But you can get DLA approvided without a diagnosis and with a general ASD. Best wishes Caroline.

Hi My son has never said that, but on occasions he goes around saying that he's stupid and useless, etc (he calls me a lot worse!!!). That's something I would never dream of calling him and can only guess that perhaps he's heard it from somewhere. I guess it may be to do with self-esteem and confidence as well. Heartbreaking isn't it? Best wishes Caroline

Hi Suze CAMHS have refused to get involved despite us being referred by our GP and Consultant on 2 occasions within the past 6 months. Hubby has to want to seek help and he's chosen not to. I really can't do anything. Just so sick of no only trying to help son keep calm but also having to break things up when son and hubby get into a squabble/vicious circle of son winding up hubby/hubby reacting etc. At the end of the day my son is 4.5 years old and hubby is a grown man. It's my duty to put my son before anyone else and that's what I feel I have to do (because I love him so much!). C.

Hi Finally made a momentous decision and that is that I feel that it's in the best of interests of both myself and my son for my husband and I to separate. We still need to work out the logistics of separating ie I currently work full-time and that'll need to change, where we'll all live, childcare arrangements, etc. It's obvious that my husband has found it extremely hard to cope with our son. I'm at a loss as to what to do ? I've repeatedly tried to talk to him (over a period of months and months), offered help any which way, asked him to speak to someone, etc. I've asked him to read up on Aspergers in order to give him an idea how the condition affects our son and how best to handle him. My husband has never been violent towards our son, but he frequently loses his temper (shouts at him, etc). I can't stand it and find that he causes me to start on him in front of our son. This is something which I'm a little ashamed about. But enough is enough, I know that my son needs a calm and relaxed atmosphere and that's something that he's doesn't ahve when my husband's around. My son deliberately antagonises my husband, husband reacts and takes the bate so to speak and so the cycle continues and gets out of hand. I tend to switch off when it comes to my son. There are things he does for attention and I find it best no to give him it. Of course, there are things which cause him to simply lose control (a symptom of having aspergers). My son (whose 4.5) loves his dad dearly and I'm petrified of the affect it'll have on him. I genuinely believe that we're doing more harm than good living the way we are (husband is so obviously unhappy and isn't coping). I'm so worried about how to tell my son and what affect it'll have on him. Should add, husband isn't a bad man as such ? he just can't cope and won't seek help or allow anyone to help him (what else can I do?). Also feel that I have to battle everything on my own. Husband works shifts, that hasn't helped. However, for the past 3.5 years I've battled single-handedly to get a diagnosis for our son (which I got on 05/05). Husband promises faithfully he'd read up on Aspergers once we got a diagnosis and that's never happened. He's just buried his head in the sand. I'm not perfect and have my faults, but I feel quite bitter and blame my husband for things getting so bad. I can honestly say that whilst life is really difficult with my son, I love him dearly and I accept him for what he is/problems he has. I love him dearly. Can't understand why husband can't cope/won't cope. I'd be interested to hear of other people's experiences. Sorry to ramble on (I'm good at that!). Just feeling really fed up just now! C.

Hi I hired a fire engine for my son back in December when he turned 4 and invited 2 of his nursery 'friends'. Have to say think I was the one that had the best time oggling at the driver and his colleague dressed in firefighters uniforms!!! It was something different anyway and often if you don't try things you don't know. Unfortunately, R was on edge the whole hour journey around town and wouldn't participate in playing with the hoses, trying on firefighters hats, etc. Real shame. You may however want to keep the party in the garden which sounds great. What about a trampoline party? How about putting up a tent? Best wishes Caroline

Hi In some ways I was in same position as you trying to get a diagnosis for my son whose now 4.5 (only just got a diagnosis a few weeks ago). One thing that always infuriated me was that nothing happened until my son was 3.5. It was soul-destroying, but in hindsight I can now clearly see the reasons why. Basically, children are measured in milestones eg by around the age of 1 most children walk, are saying 'mummy', etc. Once specialists do get involved they look at the most obvious things first eg is the child frustrated because of problems communicating (we heard that one too!). I can totally emphasise with the situation you're in but hang in there. Don't give up ? one of the things that I think helped a great deal was that I was consistent in what I'd been saying since my son was 15 months old (ie horrendous tantrums, etc). If you feel strongly that there's something more than language problems, stick to your guns. Time will tell! I know that's hard to hear especially when you need help now, but in my case I found that it was a case of sitting back and watching my son's behaviour become 'not normal'. In particular, when he started nursery, it became very obvious. Fraid I can't give any advice as to what to do now. Best wishes Caroline.

Hi My 4.5 year old son (recently diagnosed with AS) will kick off if someone even so much as looks at him. For instance, shortly after Christmas time I took him out for a walk accompanied by his care worker (who thankfully witnessed the incident!) ? R has his remote control thunderbird. A middle-aged friendly woman passer-by commented what a lucky boy he was to have got such a nice toy from santa. He got extremely cross and flipped, shouting and growling at the poor woman not to look at him. This is by no means an unusual occurrence and happens frequently. I can't work out why he does this ? I guess he may find someone speaking to him intrusive maybe? Can't give any advise as such on how to handle it ? I simply try to ignore it. Best wishes. C.

Hi I do think awareness of ASDs needs to be raised, but I'm not convinced that doing it so blatantly is the best way forward. Cards are much more subtle and can be shown when the need arises. Caroline.

Hi Can't give you any specific advice just now. But one thing that may put your mind at rest is that I used to work in at a Further Education College. They have a department which specifically helps students with various disabilities including ASDs. Before I had my son (whose 4.5 now), I was sick fed up getting emails about Aspergers all the time. Little did I know ... I hadn't a clue what Aspergers, autism, etc was. The department certainly made a point of communicating that there are people who have difficulties which aren't always immediately obvious. My point is that they were fantastic and ensured that the staff of 600 people knew about ASDs. Chances are the Uni your son wants to attend will have a department. I'd have a chat with them and see what advise they can give. That will hopefully put your mind at ease. Best wishes Caroline.

Hi Is it possible that you could make your thoughts known to the organisers? Your not asking for special favours, but setting the competition up which just enhances the difficulties of the special needs kids isn't on. The aim of the competition shouldn't have been to create divisions, but merely to display inclusiveness, acceptance, etc. I guess it kind of depends on whether you let your child participate on whether the special needs kids were just happy to take part or whether it made them feel bad. C.

Hi Best of luck ? hope you hear what you're hoping to hear if that makes any sense. In my case, my son is 4.5 and I very much felt like we were being passed from pillar to post. Cut a long story short, one particular consultants name kept cropping up again and again as the person to see, however she had been off sick for months due to a serious injury. I kept phoning her secretary every couple of weeks to see if there was any sign of her returning. Hey presto she phoned me one Friday and arranged an ADOS assessment on the Tuesday. Had to wait 10 agonising days for the results, but I got a diagnosis for my son. That was exactly what I'd been praying for! So many specialists/people kept telling me that my son didn't need a diagnosis to get help. Boy, they were so wrong! Inbetween snibbling (bit of an emotional rollercoaster being given the news ? relief, sadness, etc) I asked what happens now to be told that my son would get help with X, Y and Z by various specialists. Best of luck. Caroline.

Hi Oh no ... you've had a nightmare of a time. I wouldn't have helped your mobile phone bill by wittering on and on about my news ? sorry! That same week I had broadband troubles as well as mobile phone troubles. R keeps hoarding things ... he put my good watch in the bucket, but bless his little heart he saw me turning the house upside down and decided to confess the night before the bins got emptied. Wasn't looking too great covered in baked beans and goodness knows what else! R also has a thing about phones. Went through 4 mobiles in 9 months ? guess I'll need to learn to keep them out of his way. C O N G R A T U L A T I O N S on your forthcoming wedding ? how exciting! Fantastic news. Regards. Caroline.

Have to say I've found my GP, whose a very nice chap, to be sympathetic but clueless! Anytime I encounter the kind of rubbish that you heard from your GP, I give a reminder that GPs are general practitioners and that when is comes to matters of ASD I prefer to go on the advice of an expert ? our consultant!!! Sorry you've had to listen to that cr*p from your GP. As if we don't have enough to cope with?! C.

Hi Wasn't going to, but couldn't help myself ? I felt compelled to send an email to the editor of that disgraceful feature (I should have wasted my time, but couldn't help myself!) ... With reference to an article entitled 'Katie Grant: Some 'autistic' children aren't ill, they're just badly behaved', I wish to express my utter disgust that this offensive and unfounded rubbish was published and put online. This article will no doubt infuriate lots of other parents like me who are unfortunate (I say unfortunate, because people like Katie Grant clearly haven't the faintest idea how a child and those around them are affected by this condition which affects every aspect of life) enough to have a child with an autistic spectrum disorder. My child is 4.5 years old and I have had to battle for 3.5 years to get a reason/diagnosis as to why my son behaves the way he does (I'll no bore you with the details!). During the 3.5 years I've had a social worker, community paediatrician, health visitor, GP, no to mention other parents of 'normal' children looking down their noses and making accusations that I'm a mother who cannot cope with a badly behaved child. Parents like me have so much to cope in terms of caring for our children as well as dealing with the prejudice that we face almost on a daily. Inferring that parents seek a diagnosis so that they can claim ?80 a week is downright insulting. Parents of autistic children are left desperate ? it's extremely difficult to hold down a job and care for an autistic child! That's not to say that they state should pay, but that's another story. On average children aren't diagnosed with an ASD until they are between 7 and 9. The diagnostic process consists of a lot of assessments by various individuals who have specific areas of expertise (speech and language therapists, child psychologists, consultants, etc). These assessments are continuous and carried out in various settings ie clinic, home, nursery, school, etc and are carried out often over years and not just over an hour! A young child isn't capable of feigning a condition like autism. It would near-impossible to cry wolf! I firmly believe that the 600% increase is quite simply due to the fact that medical professionals (and other individuals) are becoming more and more aware of the condition. A lot of research has already been carried out, but more still needs to be done. It would have been far better to have raised awareness of the condition by opening your readers eyes by doing a feature on how this condition can affect people ? there's a big difference between a child being naughty because they are naughty, as opposed to a child being naughty because they cannot cope in the environment they are in (of course every child can be naughty which include ASD children because that's what children do on occasions!). A child in a wheelchair is given much more sympathy than a child with a mental health disorder. Unfortunately, that's life, but articles like the one published don't help!!! C.

Hi I completed the dreaded DLA form about 10 weeks ago. I was one of the lucky ones that got it approved first time. I had help filling out the form by someone who works for Special Needs Information Point. If you want to PM I can run through the kind of things I put. Basically you have to think of the worst day that you've ever had ... in my case that wasn't too difficult as most days can be horrendous! I certainly wasn't told what to write, but after showing this person copies of the various reports, etc she helped me put it down on paper. Things like 'does your child need help through the night?', I said no initially, but was then told that strictly speaking that wasn't true ... I have to stay with my child until he goes to sleep and comfort him, he gets up every night without fail and I have to stay with him until he drops off again, he wakes up screaming at 2.30am demanding a bath I have to deal with that, etc. There's a page near the end whereby I summarised everything. I basically set it out as a typical day by detailing how easy/difficult it is to get my child ready for nursery, en route to nursery he's often threatened to run out in front of a car (and has actually tried to do it!), he has no sense of danger outside or in the house (eg he has to be supervised at all times and cannot be left in the garden on his own, if I'm standing ironing despite warning of the potential danger of getting a burn, he's still touched the hot iron, he'll climb into a roasting hot bath (and can't be left for a second - he can't differentiate between hot and cold well as he has sensory issues!). I'm by no means trying to put words in your mouth, just hope that maybe I've given a few pointers. Best of luck with your application. The form is horrible! Remember and photocopy it once you've completed it. Regards Caroline

Hi Clearly that stupid woman hasn't a clue what we parents have to go through to get a diagnosis. Sure autistic kids will behave badly because kids do, but then they have lots of added problems eg sensory issues, social problems, the list goes on. Often it takes years to get a diagnosis ? I should know like lots of other parents of ASD kids! That includes months/years of having the finger pointed at you and being checked out to see what kind of parent you are ... The Sunday Times clearly aren't fussy about the muck that they print.

Hi I can relate to everything you've mentioned. I was filling out the dreaded DLA form about 10 weeks ago now (incidentally, we got it approved first time which I'm really pleased about). It was strange because there were lots of things that I would have said my son had no problem with such as sleeping/needing help during the night etc. If I hadn't had the help of a fantastic person who works for Special Needs Information Point, we wouldn't have had DLA approved. She pointed out that because the only way I can get my son to sleep is to stay with him until he falls asleep, get up through the night every night when he cries, etc, needs to be comforted, needs to be persuaded that having a bath at 2.30am isn't a good time, etc that all that constituted needing help at night. Maybe I was just being plain thick ? I guess that I kinda think everything about our life is 'normal' because that's what we live with every day. Anyhow, one comment she did make when helping me fill out the form and after I showed her reports about my son, was that somehow I've managed to make life 'normal'. The point being, that my son running around with no clothes on (sensory issues), shouting screaming, his obsessions, etc although they aren't normal, I've (like a lot of other people on this forum!) have had to make life as normal as possible. Hope that doesn't sound like I'm making myself out to be some kind of superwoman (I'd love to be but Im not!) ? just wanted to say that I know what you mean about other people thinking we're weird. Caroline.

Hi I totally understand what you're going through just now. I put up with a health visitor, GP, nursery teacher and paediatrician that told me that my son was going through the terrible twos, I needed to be firm, he's boisterous, etc etc. I made a point of telling them that I thought my son had an ASD namely Aspergers. I did a lot of research (I'm not making myself out to be an expert ? far from it). I just knew that something wasn't right ie he'd bang his head off walls, hit himself in the face, make horrendous threats, try to run out in front of cars on the road, go from calm to furious within seconds for no apparent reason, the list goes on! I kept diaries detailing everything that happened that day just before I went to bed. These behaviours/traits almost become normal because we live with them day in day out, but I found looking back at what I'd written that when I doubted myself it gave me amunition to go back to the specialists with. It's also easy to forget odd things that happen, especially when on a daily basis. As my son got older (he's 4.5 now and we only got a diagnosis 6 days ago), it became more and more obvious to everyone that something wasn't right. Even then, the nursery manager, health visitor and paed still claimed he didn't have Aspergers. Again, the more research I did and finally finding this forum (what a godesend?!) it was obvious that kids on the spectrum don't tick every box on these damn checklists that specialists have. As parents we know that, but I wonder if specialists do. Please don't give up. My advice is to stick to your guns, be consistent in what you're saying, keep written records of who you speak to, what's said, dates of meetings/assessments, odd things that your child does, etc and lastly pester the hell out of specialists. I phoned them all on a monthly/fortnightly/weekly basis. I think they got fed up of me and finally decided to shut me up! Seriously, I think it was a long hard slog, but I was lucky in that we've got a fantastic care worker who witnessed a lot of what was going on. She backed me up that something was definitely not right. I asked her to attend assessments/appointments and speak to the specialists about her observations. The specialists had no choice but to listen to an independent person who wasn't giving a biased opinion. Don't let anyone tell you that there's nothing wrong. I frequently turned the tables, and said 'okay, if you're saying it ain't Aspergers, then tell me what it is?'. Needless to say they couldn't! Prior to appointments (about 10 days in advance) I typed out a report detailing what my pregancy was like, what the birth was like, when I noticed things weren't right, my child's development, odd traits, behaviours, obsessions, etc. This report wasn't screeds and screeds, it was mainly one or two line bullet points. It definitely helped. Keep your chin and and keep going. I've babbled and babbled, but I hope that maybe there's a few pointers for you. Best of luck. keep in touch and let me know how you get on. Regards Caroline.

Hi Add me to the list!!! My 4.5 year old son is EXACTLY the same. If someone even looks at him, he can fly into a rage telling them not to look at him or speak to him. Even if I'm simply asking him to do something, he flies off the handle telling me I'm nasty or evil and that he hates me. I'll be watching this post with interest, because I haven't a clue how to tackle this one. Best wishes Caroline.

Hi Your son sounds like he behaves a lot like my son did/does. My son is 4.5 now and I can totally sympathise with how you feel. People kept telling me that my son had the terrible twos apparently from the age of 1 to 3.5!!! People/specialists would see my son for all of 20 - 30 minutes and irritatingly see him on his best behaviour and then assume I was a neurotic mother. Took a long time to get anyone to believe me or listen, but there are things that you can do ... I kept a diary on almost a daily basis noting down everything that struck me as odd ie my son would go from being calm one minute to furious the next for no obvious reason, he would also band his head off solid plaster walls, etc. All of this behaviour almost seems normal after a while because us parents live with it day in day out. But when I look back at my diaries I can see lots of things that were far from normal. I firmly believe that it was the fact that I was consistent and kept the diaries that helped me get a diagnosis for my son (on Friday!!!). I frequently doubted myself and on a good day would think it's just me being a cr*p mum, then suddenly my son would do or say something that would reaffirm my belief that there was something wrong. My Health Visitor and GP weren't very helpful. I found that they kept saying that a child has to reach developmental milestones before he could really be compared (my son was aged 3 before we got our first referral to a specialist). I understand that, but it was extremely frustrating. Once my son started nursery it became more and more obvious what his problems were in particular he would be very aggressive and scare the hell out of the other kids. He was/is like a Jekyll and Hyde character, being lovely one minute and then flying into an almighty rage the next. Don't doubt yourself. Kept a written record, because it's easy to forget things day in day out and pester the hell out of specialists until they take notice. That's what happened with me ? I pestered and pestered until they got fed up of me (I suspect!). As a mum you know you child better than anyone, and I believe that mum's have a gut instinct that's always right. Best wishes Caroline.

Hi Knowledge like this could be used as ammunition! Have to say I visited a school for children with emotional, social and behaviour problems and was very impressed. The Assistant Head answered my question when asked do you know the difference between a child behaving badly because they're naughty and a child behaving badly because there is something wrong? She did and gave a very good illustration of this. In fact, at that school the two groups of kids are split and taught separately. The school day was very well structured and the staff know how to handle the kids. I'll not go into more detail, but I guess it depends on the particular school. All I'm saying is that they knew exactly how to handle the challenging behaviour appropriately which impressed me a great deal. If however, you feel that your child would be best educated in an ASD specialist school, then go for it and don't let anyone tell you otherwise. I guess what I'm saying is that you'll have to prepare a report stating the pros and cons of either school. That news article is certainly a wake up call. At the end of the day, I believe that it depends on the needs of each child in terms of how affected they are by their condition. If you believe your child in best placed in a specific school then fight tooth and nail and don't budge ? the article will make most EPs think carefully!!! Best of luck C.