Natbasher Report post Posted February 18, 2009 (edited) Hi everyone, I have lurked around here for a couple of evenings now gleaning advice & useful info and decided it's finally time to pluck up the courage and say 'hello'. I've only been on one other forum before this (an entertainment one) and found my posts usually went down like lead baloons so I've never really bothered since, but everyone here seems very friendly, so I'm going to risk it and hope my foot-in-mouth disease never causes offence here! I'm here because my 6 year old son was diagnosed with HFA about 5 weeks ago, and I've found myself completely shaken by it even though the dx was expected. Peeople keep saying "oh you must be so relieved to finally know" and I just keep nodding & smiling whilst secretly my heart plunges another few inches! I think my main problem is the permanence of it - and the absolute morbid fear that I now have for my son's future. Although he's academically very able, the school and the proffessionals who have witnessed him at school seem to think that his social behaviour is quite extreme (although we generally have less problems at home and I think when we're out at play parks etc the other kids just think he's 'a bit odd', which unfortunately leads to him being bullied sometimes). There's been so much negative press recently though with the Exeter bomber, and that poor guy who hacked into the pentagon computers and I can really see how my son could very easily grow up to do something like this - he's so easily led....and obsessed with computers!! I've read so much about HFA and aspergers in the last few weeks, I now feel far more able to understand where my son's head's at, but understanding it almost seems to make it worse, and to top it all I've developed a really overwhelming fear of me and his dad dying as I have no family who could look after him and to be blunt, I'd rather he was raised by wolves than my partner's family who live hundreds of miles away and barely know him anyway. Sorry to be morbid - I'm not always this miserable....honest! Ther's just a hell of a lot of stuff going on at the moment and I feel quite close to exploding - or maybe imploding , I'm not sure which! Anyway, now I've finished moaning I'd really like to say "thank you" to everybody, as reading the posts on here is the only thing that's helped me to feel a bit positive and also a hell of a lot less isolated. It's really great to read posts by people with autism & aspergers too and realise that it's not all doom and gloom - you've given me more hope for my son's future than I've had for a long time - that's gotta be worth a baloon ! Edited February 18, 2009 by Natbasher Quote Share this post Link to post Share on other sites
Tally Report post Posted February 18, 2009 Hello, and welcome to the forum. I am an adult with AS, so my experience when I got the diagnosis was different to yours. I did feel relieved, but I also felt sad. Many of the parents here seem to experience really mixed feelings. You will certainly find you are not alone in that! Quote Share this post Link to post Share on other sites
bid Report post Posted February 18, 2009 Welcome to the forum I have a dx of AS, and I also have an adult son with AS, ADHD and dyspraxia. The time around diagnosis is very strange, full of conflicting emotions. In many ways you go through a version of the grieving process, but you do find a peaceful place eventually <'> As far as worrying about the future...when my son was little his difficulties were so severe that I never thought he would be able to work, use public transport or live independently. But now as an adult he has a job, travels around the country to see mates, and is working towards moving into his own place I have difficulties too, but I have a family and work full-time Hope you feel at home here...we're a great bunch Bid Quote Share this post Link to post Share on other sites
muppet Report post Posted February 18, 2009 Hi Natbasher, I lurk a lot on this forum but rarely respond as I never quite know what to say so say nothing rather than the wrong thing but after reading your post I felt the urge to reply. My son was diagnosed almost a year ago, it was no surprise to me as I'd "known" that he was since an early age. His diagnosis also brought into very sharp focus that there was a very real and very strong possibility that I too am AS - again something I've felt for a very long time. My biggest fear has always been that being a single parent with limited support that it is the blind leading the blind. When the boy was diagnosed it was a huge relief and I actually felt it would be the making of him, the biggest "handicap" he has is other peoples ignorance. What it meant for us was that we were not wrong - despite what his school continually told us - we just think and do things differently and have abilities and qualities that bring a whole new perspective to everyday life. Try this - google famous people with aspergers - you will be suprised. They say that Winston Churchill was AS. My grandad used to tell me - "Keep b***ering in lad!!!!" Quote Share this post Link to post Share on other sites
NickyB Report post Posted February 18, 2009 Hello Natbasher WOW, you could have been describing my younger boy - he was diagnosed with HFA when he was 4, and he's now 6. I found that, although I wasn't surprised by the dx, nothing could have prepared me for the feeling I had when the consultant actually said it. I too am daunted by the fact that it's permanent, but I've come to accept it more now, and just take it a day at a time. I've done loads of research about autism and that's really helped. He is amazing in so many ways, and I try my best to focus on that. He's obsessed with cars, and he's brilliant at maths and reading. As muppet said, you'd be surprised at how many amazing people have ASD. I know you'll find lots of support on this forum - it's great to find people who really understand. Take care Nicky <'> Quote Share this post Link to post Share on other sites
denny Report post Posted February 18, 2009 hi, iknow what you are going through, my son is currently being assessed for AS ,but there is no doubt he has it, it is avery emotional time , but i have a friend with a 16yr old with AS and i have seen the progess he has made both socially and temerment ,my friend has been through hell with her son at times but the good times outweigh the bad and she is so proud of him now, which gives me an awful lot of hope where my son is concerned,although i am worrird about his future and about him being bullied , i am fairly optomistic on his future especially after reading about older people with AS and what they have achieved, so i hope you can stay positive and realise with support nothing is impossible also the more i know bout this condition i realise that my husband has quite strong traits and hearing what he was like as a child but we put up with his odd behavior and he is a sucess in his job which is quite high powered, nd he wouldnt be the person he is without it. so good luck for the future Quote Share this post Link to post Share on other sites
Mad cat lady Report post Posted February 18, 2009 I think it is quite normal to feel like this. Everybody is different with how they react. When the boy was given his diagnoses we were all relieved, we had known from a young age that he was HFA, he was actually dx'd at 3 or 4, it was passed on to ed psych to do further assessments as he would be going to school and she decided there was absolutely nothing wrong with him and that he came from a dysfunctional family. The boy then didn't get the help he should have, he was re assessed finally 2 years ago, and the assessment team told us there was no doubt about it and it wasn't even as if he was borderline, they could not believe the treatment we had received (note. they were not informed of anything that had happened before so they could be completely objective), anyway it did take a huge weight off our shoulders as we felt we could move on. However just after the boy got his dx, we were asked by the school if we would mind if mini me could be assessed, which took us a bit by surprise, I was absolutely devastated when he was dx'd with Aspergers and Attention Deficit. I know how I felt as I grew up and I just didn't want it for him, he was the bright, clever one. I think at the time it had a lot to do with guilt, we hadn't picked up on his quirks and his needs, as they are so different from the boy's. It took me quite some time to come to terms with it, and like you I felt my heart sinking everytime someone mentioned it, but I think the fact of needing to do what is best for you child over rides the feeling of guilt, sort of like a period of mourning for the child you thought you had. Sorry if I have not expressed myself very well, I am not great at putting down what I actually mean. I also love your "foot-in-mouth" saying, I have used this exact phrase many times about myself, I also get the looks of horror when I been thinking something only to discover that I have actually said it out loud by accident (a head down and shuffle away moment). I wish I had found this site sooner, I think having someone that understood how I felt at the time would have been benficial Rambling again sorry MCL Quote Share this post Link to post Share on other sites
pearl Report post Posted February 18, 2009 Hi & welcome <'> I'll just echo what bid said, as my lad at 19 is in a v similar place to hers - working, socialising & saving hard for his own place. Never thought I'd see the day. Take heart <'> Quote Share this post Link to post Share on other sites
Kathryn Report post Posted February 18, 2009 Hi Natbasher, Welcome to the forum. We're all at various places along the pre and post dx road, and I can certainly identify with a lot of the fears you describe, as I'm sure can many others. 5 weeks isn't a long time and it will take some time to adjust to the diagnosis. People here will understand how you feel so you'll get lots of support for that. We also have a thriving "entertainment" section here for when you're feeling in a lighter mood - just pop over to Off Topic! K x Quote Share this post Link to post Share on other sites
Natbasher Report post Posted February 18, 2009 Thank you a ll so much for making me feel welcome. I was going to say you wouldn't believe what a relief it is to finally make contact with people who understand - but then I'm sure you all would! Bid and Pearl, it's so good to hear some positive stuff about people with ASD/Aspergers - I feel really encouraged by your stories, so thank you! NickyB, like you I think my son is amazing in a million and one ways, but unfortnately the rest of the world just don't seem to see it - they'd rather focus on the less positive behaviours than his kindness with sharing, his analytical thinking or his wicked sense of humour. I definately agree with Muppet that other people's ignorance is the greatest handicap, but I have a feeling that we're fighting a losing battle when it comes to educating those around us. Autism is after all a difficult concept to understand. To be honest , if it had never affected my life I would probably never had really understood what it was all about - like many people I thought everyone with autism was like Rainman! Even my best friend doesn't really get it - she still gets deeply offended when my son points out some dirt on her kitchen floor, or argues with her as an equal in stead of respecting her 'status' as an elder! In fact I'm seeing so many people in a whole new light - even my father who I haven't spoken to for years - I'm now thinking it's more than likely that he could be on the spectrum as it would explain so much! I think although all our experiences are different, every one of you who's replied to this topic has said something I can identify with and that's a good feeling. I don't seem to belong in many places, but I'm hoping I might just slot in here. Unfortunately I'm off to work in a minute so don't have time to browse around tonight, but I'll look forward to popping in again next time I have a night off! Take care everyone, Nat x Quote Share this post Link to post Share on other sites
josie h Report post Posted February 18, 2009 Hi, welcome to the forum. I am sure you will find some good support and advice here and you definately won't feel alone. although we all have different children with different needs, at the end of the day, all our children come under the umbrella of autism. There are too many ignorant people out there, who think they know everything but don't. The best way to get good, sound advice is to talk to the people that really know, and that is other parents/carers, who have been in similar situations. Hope you find the forum useful, Josie Quote Share this post Link to post Share on other sites
Natbasher Report post Posted February 19, 2009 Hi, welcome to the forum. I am sure you will find some good support and advice here and you definately won't feel alone. although we all have different children with different needs, at the end of the day, all our children come under the umbrella of autism. There are too many ignorant people out there, who think they know everything but don't. The best way to get good, sound advice is to talk to the people that really know, and that is other parents/carers, who have been in similar situations. Hope you find the forum useful, Josie Cheers Josie - if I never came on here again I've already found it more useful than any number of proffessionals proffering their 'expertise' (ooh do I sound bitter??) - That's a little unfair really as a couple of them have been great! Quote Share this post Link to post Share on other sites
