szxmum

<'> >< <'> As Bid and Baddad say take your time and look after yourself. My own son's official diagnosis is dated exactly one month ago and it's been a rollercoaster. Some days I'm great, the next I'll be back on here desperately trying to make sense of it all - this place has become my second home Take care, Szxmum xxx

I'm with you on this one - after experiencing the impact of sustained, high anxiety I would go along the lines of if it works, why take it away for the sake of appearances. However, you may find that as a teenager, the need to be the same as the pack will mean that he will stop using them of his own volition (at least in public or where he may be seen by his peers). It is interesting though, as you know my son was not diagnosed till 17 and he has developed his own coping strategies. He will cover his ears or eyes with his hands or he will pull his hoody over his head - to all intents and purposes, he has supplied his own defenders. Capd??? sorry, don't know that one yet. Szxmum xxx

Good observation Nobby. I can relate to that - it is the same immaturity that ds is displaying when he blames his own difficulties on his acne, school, where he lives, etc etc As you said in one of your other posts, AS people CAN learn social skills - it just takes longer and doesn't come instinctively. In the same vein, people can learn to take responsibility for their own lives and actions, it's just that some people never mature enough to take that step, preferring instead the comfort of blaming their parents, school, the world in general for their problems. I am sure that given time my own ds will eventually mature and take responsibility.

I have learnt so much about AS over the past year and especially over the last couple of months and your post Jaded is exactly the point where I find myself at now. What interests me is the intensity of the stress reaction experienced by someone with AS. I agree, a stress response is a normal human trait but...... the stress responses (triggered by autism) exhibited by my ds are extreme (abnormal). He experiences this extreme stress response on a daily basis in reponse to trying to live a "normal" life eg going to a supermarket, going on a bus, going into the bank, leaving the house. This extreme stress response has resulted in mental health problems - anxiety, depression, phobias, OCD. This extreme stress response has disabled him - he cannot function "normally" in society. So what is the answer - the only thing that makes sense to me is the SPELL approach from the NAS (S - structure; P - positive reinforcement; E - empathy; L - Low arousal NOT no arousal; L - links). Ds is going to have to learn that he responds severely to stress and will have to learn to manage his environment to keep his stress levels optimum for him. I do have a passionate interest in this area because I now firmly believe that Autism runs in our family and I'm not indiscriminitely self-diagnosing here, honestly. I believe my father and my brother would receive an ASD diagnosis. My father, unfortunately, is dead now but he was an alcoholic and I believe he self-medicated to numb his anxiety. My brother suffers severe generalised anxiety and has extreme panic attacks - he also self-medicates on alcohol and any prescription drug he can get his hands on. (BTW when I told my brother about ds's diagnosis, he told his psychiatrist who told him that AS was a childhood condition that you grew out of ) So as you can see, I am extremely keen that my own ds learns early to manage his own anxiety and extreme stress reactions in a healthy way that does not involve trying to numb the feelings through drugs or alcohol. Anyway, sorry to the OP for highjacking your thread but Jaded's post sent me off on one of my "there has to be a way to deal with this moments"

Great news Tally <'>

Oh - how I can relate to this. The clubs that I tried taking ds to when he was younger (long before diagnosis) - football, rugby, swimming, karate, ballroom dancing , drama - each and every one, a dismal failure but I persevered, like a good mother - poor old ds, I really feel for the lad looking back. I think the NAS needs a campaign to target secondary school games teachers. Seriously, they are ideally placed to pick up young people who are slipping through the net. Here are a couple of quotes from my ds year 7 and year 8 PE reports: "Ds does not find any aspect of this subject easy but he always brings his kit and tries his best. ....within games he can reproduce some skills if given time and space. ....he has shown a competitive streak in running that I did not know he had." "....Games still represents a challenge where situations change too quickly for him to react at times." It's there, screaming out to the educated eye but no-one picked up on it. I'm not a great one for stereotypes but OMG ds is stereotypically AS and was back in year 7 - computer whizz-kid, glasses, poor social skills and hopeless at team sports. Ah well, as they say, onwards and upwards,

I think comments like this depend on who says it, what the context is and how you are feeling at the time. I have also had this said to me by the wonderful Nurture Group teacher who kept me going this last year through ds's GCSEs and attempt at sixth form. I can remember thinking at the time "OMG, he doesn't think ds has AS. What the h*ll do I do now? What the h*ll is the matter with ds?" Looking back, I think all he was trying to do was to be reassuring. Another comment that was made to me at a later date by a different Nurture Group teacher was that ds was "the most Asperger's young person she had ever met". I can remember thinking at the time "What the h*ll is that supposed to mean? Is this supposed to make me feel better?". Again looking back this was at the time of ds's diagnosis and I know at the time there was a lot of behind-the-scenes meetings to discuss ds. I am just guessing here (because I'll never really know) but I think there will have been discussions with the Ed Psych about ds's Autism Assessment. I found out last week that ds's ADOS scores were that high they were nearly off the scale. This puts a different slant on the Nurture Group teacher's comments. I just picture the discussions "OMG, how did we miss this one!!" However, this is all surmise on my part. What matters is that we know now and are beginning to move forward. Wow Sally, you don't take any prisoners . Personally, I was thinking of a reply along the lines of "It's great that Autistic Spectrum traits are more widely recognised within the general population but don't forget that a high concentration of these traits can severely impact on an individual's ability to function in society". But then I always was a bit of a wuss (sp?) - okay a bit wet

As always, thankyou to everyone for your views and your input - it has been excellent to hear so many different angles on this one. As usual for me, a good nights sleep has helped and I have spent last night and this morning trying to seperate out my emotions and ds's emotions. DS can have very low mood swings which sends me panicking into headless chicken mode trying to find a solution - a natural enough response I suppose, when someone you love is hurting, you want to make it better. Ultimately though,making friends is ds's responsibility - he's going to have to dig deep and work out this one for himself. We went for a long walk this morning and it was interesting to hear his views. He fully accepts that I cannot find him friends that this is one area he has to work out for himself. I then asked him why he "dumped" on me emotionally as it made me feel as I had to "fix" it - his response was that I am the only person he feels able to talk to when he is really down So I now need to look at my response - rather than take it on board myself, I need to start deflecting it back to ds and say "okay, that's what you feel, what are YOU going to do about it". We chatted about no longer going to school and whether that was the right move - he feels it is, he is nervous and unsure about what his future holds but is so relieved at not having to deal with anxiety and sensory overload each day. We also chatted about Aspergers and I was interested to see him relaxed and chatting about it openly - that is a first for him and a really big step forward. I was also pleased there was no hint of the "poor me" and "victim mentality" that we had going on yesterday So all-in-all a good morning I'm now off to drag him off his computer, he can come and help me sand some doors down ready for painting - well as we're both not working, we've got to earn our keep - I know he's got AS with MH problems but there's going to be no spending all day on the 'puter in this house If I keep this up hard enough, the poor lad will be glad to go to college or work :lol:

<'> >< <'> Mum of 3 It's just as hard on ASD parents as the children - I hope today has been easier for you all <'>

Ds is desperately lonely - I don't know where this myth came about people with AS being happy on their own and not wanting any friends - ds so wants a friend. He seems however to be grasping at totally unrealistic solutions. Last year it was "If I did not have acne I would have a group of friends and a social life". Well we treated the acne with Roaccutaine (fantastic results; brilliant - the acne has gone) unfortunately it was not the miracle solution ds hoped for, still no friends, no social life. Today it was "This town is holding me back. If I lived somewhere else I would have lots of friends and a social life". He couldn't cope with moving out of home yet, he got lost in a village 3 miles away and we had to drive around looking for him All he wants is to be a "normal" seventeen year old - to go to the pictures, go for a coffee, hang out and maybe have a girlfriend. He's nowhere near the pubs and clubs stage. My heart bleeds for him and I just want to take away his pain I can take him out of school, sort DLA out for him but I can't fix this. I've suggested no end of quiet clubs - scouts, stamps, chess, church groups but he will NOT go. I've suggested emailing two old school friends (girl twins) to see if they want to go to the pictures but no. He has one ASD friend but tbh neither has the skills to make it work - they see each other once a month-ish and ds is always disappointed. He is waayyyyy past the age where Mums arrange friends around for tea - that all fizzled out in year 7. I really feel for him - he wants a friend yet he is scared of going anywhere new to try to meet new people. The fear is as strong, if not stronger than the loneliness and I don't know what to do

I am really, really pleased for you <'> >< My dh and I can totally empathise with your feelings towards "some" doctors. I would like to take my own ds's ADOS scores (which were so high they were nearly off the scale) back to two lady psychiatrists who we saw a year ago when things were at their worst and say "now tell me that Asperger's is just a fashion amongst parents and that my son is just shy". Anyway, good for you <'> again.

Oxgirl, I can relate to everything in your post - I could have written it myself - it's exhausting, isn't it <'> My own ds bed-time and middle-of-the-night rituals have decreased dramatically since we have taken him out of school. His anxiety is much less which has decreased the OCD rituals performed to control or reduce the anxiety about school (the transition). For myself, I am finally getting some decent night's sleep

I feel like I am different from a lot (not all) of people on this forum in that I am working backwards from the shock of a diagnosis and everything falling apart rather than working towards a diagnosis. I am struggling trying to make sense of it all I was reading my ds Ed Psych report last night and there was a whole page devoted to his ADOS. Now I'd skimmed over this part previously as I didn't have a clue what it was on about so last night I decided to investigate further. I'm in shock, I am horrified at how high the scores are - they are way over the cut off points for Autism nevermind Aspergers Syndrome. I understand that he has been given a diasgnosis of Aspergers Syndrome because there was no delay in language or cognitive development. I guess what I am struggling with is the fact that you often hear Aspergers described as "mild" autism. This is emphasised on the ADOS with the cut-off point for Aspergers being lower than for Autism. I think we have also been guilty of thinking it's only "mild" because he has "coped" for so long. However, there is nothing mild in his long list of difficulties / abnormalities listed under Communication, Reciprocal Social Interaction and Stereotyped Behaviours and Restricted Interests. How could we NOT have known? Denial - I don't think so Lack of knowledge and understanding about what we were experiencing - definitely Familiarity - ds is an "extreme" version of my dh, my brother and my dad, no flags went up that we had a problem - definitely There - I've answered my own question. It looks like we have a long road ahead of us. I feel like I'm in denial now though - I keep thinking, it can't be as bad as that but that's an awfully long list that I'm looking at

Sorry folks, it's me again I have been reading with interest various posts that cover "transitions" and the behaviour or "meltdowns" that occur. My ds, 17, never exhibited violent or extreme meltdowns. Looking back though, I can see a history of anxiety, agitation, tears and "shutdowns" when trying anything new, unusual or during a change in routine. As a family, we coped, adapted, compensated and just dealt with it. What interests me is the way ds, as an undiagnosed person with AS, has learnt to deal with "transitions". This is how I see it - it seems to me as if the transition causes a big anxiety spike; the anxiety triggers OCD; the resulting ritual allows ds to deal with or calm the anxiety and he manages to cope with the transition. I'll give you a couple of examples: Mealtimes at home - I give ds a 10 minute warning that a meal is due. Ds embarks on a ritual approx 5-10 mins long before he leaves his bedroom and appears at the table. I've no idea what is involved as his bedroom door is closed but I know the anxiety levels go up as there is a lot of hurried movements and clattering about. Dd (NT) just drops whatever she is doing and appears instantly. Leaving the house - again we have quite a long elaborate OCD ritual that needs to be performed prior to leaving the house. It involves checking taps are off, lights are off, switches are off, having a drink of water and lots of other things. Going on holiday - I don't think there is a post long enough to describe what this entails I am just interested to find out if any ASD adults or those of you with older ASD children or teens can relate to this. Why should change (even when you have been doing the "change" for years) elicit such anxiety? It doesn't appear to be habit or a learnt behaviour because ds complains of hammering heart, dry mouth, etc As always, any thoughts, views, explanations, opinions gratefully received, szxmum xxxx

<'> Frogslegs I completely agree with you about secondary schools. My ds attended a school with 1400 pupils and it was like bashing a square peg into a round whole, he just did not fit. I am sorry if my post gave the impression that I thought an early diagnosis was the answer to everything, that was not my intention and it is certainly not the way I think. I read all the stories of people who trying to get support for their children and it makes me sad and angry. But at least awareness is increasing and in some areas support and understanding is improving. My hope is that this good practise will spread and spread and there will be less and less stories like the ones on this thread.

Thank you for sharing your story. I just want to say that I think you have been incredible to battle on for so long with the education system; well done for the steps you have taken and good luck for your job interview. Your Mum must be very, very proud of you - I know I would be. <'> <'> The reason that we took ds out of school in year 12 was because we could see the future panning out exactly as you have described. I guess the only difference between your story and my ds is that we hit our final "could not cope" moment 7 years earlier. Your story and all the others that have been shared above just go to show how important early diagnosis is. I appreciate that diagnosis does not provide all the anwers but at least as a parent it raises your awareness - you'll know to take note of the warning signs and at least try not lurch unwittingly from crisis to crisis.

smiley - you are an angel. Thanks for your post xxx

Hi alexmum2 - your post has been on my mind since I read it. Has your son been diagnosed? Is he receiving any support in school? My son also had a "little mother" who looked after him in years 7 & 8. Unfortunately, she left at the start of year 9 and things went downhill rapidly after that. I often wonder if we had received an early diagnosis (instead of at 17) whether things would have been any different. In our area there are no Asd schools - it is mainstream inclusion or a temporary exclusion unit whose purpose is to get students back into mainstream as quickly as possible. I have often wondered if I had known, would I have home-schooled? I honestly don't know - maybe for primary but for GCSEs, that's a big ask. You know your son is depressed, so I would keep watching. Is there anyone at school who you can let know that he is depressed? I was very lucky to get the support of a fantastic Nurture Group teacher in year 11 - without him ds would not have passed his GCSes. I withdrew ds twice from school - once in year 11 at Easter before his GCSEs and then finally in year 12, a month ago. On both occasions, I found I acted quickly and instinctively - there was no thought involved, it was the ONLY course of action to take. Is there any way your son's school could set up a Circle of Friends or a Buddy System for your son - maybe a buddy his own age and an older buddy say in year 10 or 11. Is there anywhere he could take time out? My son's school had a Nurture Group based in a mobile classroom that was set out like a front room and kitchen. Ds had an open pass to go there on any day, at any time. He never joined in any of the activities, they used to play cards or cook amongst other things, but he liked the environment and it gave him a place to go at breaks, lunchtimes, during PE, German and DT (he failed those 3 GCSes by the way but passed 6 others, plus a BTEC in IT - now there's a surprise ). I think the earlier these systems are in place, the more successful they can be. For my son, year 11 was too late but they may just be useful for your son in year 7 so I would certainly be pushing for support for him now. Good luck <'>

Bid, Nellie, Lisac - thankyou so much for taking the time to reply and share your stories <'> (Alexmum2, I haven't forgotten you but I want to respond to you seperately) You have all certainly have made me feel that there is light at the end of the tunnel. I know we have made the right decision for ds with taking him out of school and me being at home. We are learning to take one day at a time (both of us ). Ds is also sleeping lots and I guess its what he needs. I have started off with two very simple steps - I get him up at 8 o'clock, and he gets up, washed and dressed, ready for the day (sometimes he will go back to bed in the day for a couple of hours, sometimes he doesn't). As a family we all go to bed around 11.30 / midnight and he is always more than happy to go to bed. He seems to fall asleep quickly and sleeps far better than he ever did when he was at school - it says a lot, doesn't it? The other thing that we do is go for a short walk after lunch, just 10 minutes or so and he seems to enjoy getting out the house. So yes, softly, softly one day at a time. Thanks again for your support guys - I've said it before but it makes such a difference to know that you are not alone and that others have had similar experiences <'> ><

Hi everyone I've been carrying on with my reading on Asperger's and am "somewhat" relieved to see that the patterns of behaviour that ds is exhibiting are not unique. I have on my hands an emotionally burnt out 17 year old with a whole raft of mental health issues that have arisen from the anxiety overload mostly experienced during secondary school. Over the past five years, we have lurched from crisis to crisis until ds physically could not function - three weeks ago, we withdrew him from sixth form and successfully applied for DLA for ds and Carer's Alowance for me. Since leaving secondary school, I am glad to say that the anxiety has substantially decreased - ds is a lot happier and more relaxed. We haven't had a panic attack in ages and the OCD and autistic behaviours, although still present, are intruding less on family life and becoming more manageable :thumbs: However, it makes me sad that things have come to this - over the years we have dealt with CAMHS, AMHS and the school Nurture Group but the thing that has made the biggest improvement in ds's life was to take him out of school. Now that he no longer has to deal with the social and sensory environment he is a changed person My concern is now, what next? There is no way he is ready for college or work (even voluntary). Intellectually, ds is very bright but in terms of social maturity he does not seem to have aged since he left primary school. He is retreating into the online and gaming world - Sonic and Mario; he avidly follows Doctor Who and is still obsessed by Pokemon and Yu-gi-oh. He has no interest in fashion, his appearance,going to a pub or nightclub, driving a car or going to work. He would like a girlfriend but runs in the opposite direction any time he passes close to a girl in the street or in a shop. He has no friends and is very isolated. However, he seems happy and for that I am thankful. I appreciate that he needs time to "heal" - secondary school has cost him a lot in terms of his mental well-being. From my reading, I see that he also needs time to mature socially or at least time to learn how to act like an adult. But I have to be honest, I'm finding this difficult (probably more so than him, he is just happy that he no longer has to deal with school). He has stepped out the "normal" or expected pattern of development. Nobody can say to me eg in 3 years, 5 years, 10 years ds will be ready to step back into society - go to college, get a job, get a girlfriend / house / family. I don't know what his future holds, I have lost all the "normal" points of reference and it is hard. In addition, I feel like I have lost my own identity - I have always worked part or full-time. I am now dependant on my husband and am a carer whose main (important) function is to "just be there" . I do appreciate the importance of "being there" but the days feel very long and lonely and I'm finding that hard too. Sorry for the rambly post but at least writing it down is clearing my head. Any thoughts, especially on the social maturity aspect of AS would be gratefully received, Szxmum xxx

Just a quick update: I phoned AMHS and asked for an appointment to meet with my son's Occupational Therapist - this was turned down. Paranoia set in as I was starting to feel that she thought I was the problem. So, I phoned AMHS again, spoke to someone else and asked for help for me this time. This lady was far more helpful, she advised me to write to the Occupational Therapist listing all my concerns. She also rang me back to say that she had spoken to the Occupational Therapist and told her that this letter would be on its way. She also found an Autism support group in my area and rang me back with a name and telephone number, saying that this gentleman would be more than happy to meet with me and discuss any issues we were facing. What a difference speaking to someone else makes. I'm still not too happy with the Occupational Therapist's attitude but I am now happy to stand back and see what support she offers ds over the next few weeks now that she knows what is going on in the background.

On a serious note - I think this is a really important point, there has to a place where you break that code of silence. Okay, often it's not pleasant or easy reading but the relief you feel when you realise you are not alone going through this is immense. Paula - your family's sense of humour is a lot like ours - you have to laugh or you cry (and I do run out of steam and cry, frequently) So, to get the day off to a good start..... You know this gorgeous weather we've been having recently, well dh and I think about the neighbours having their family barbeques. Picture the scene "Oooh darling, was that a spot of rain I felt" :lol:

On my....... MelowMeldrew and Paula - you have my peeing in a cup beat hands down - I concede We ought to go out one night lord knows what would come out after a few Quick update - shhhhhhhhhh - it's stopped (4 days and counting). Lord I hope I haven't spoken too soon MelowMeldrew - my ds is also the same as yours - his obsessive and odd behaviours can start and stop suddenly from one day to the next but one thing I have noticed is that as soon as one stops, there is another that takes it's place. In place of the peeing, I now have everything being thrown into the bath - towels, loo paper, soap, shampoo, whatever's left lying around in the bathroom It s a lot easier on my nerves tho' Why, what is going on in his brain that results in these behaviours, I wan't to understand!!!! My dd (NT) 14, doesn't do these things - she is a messy, lazy creature but that's what teenage girls are. Can't top stealing sister's knickers but ds does double up and wear two pairs of knickers . We also have socks that are placed under the mattress (right under) Oooooh and washing that is on the airer - picture the tops and t-shirts all straight - I come back and they're all scrunched up - why? Lord I hate winter - at least he isn't interested in my washing line in summer (yet).

On my....... MelowMeldrew and Paula - you have my peeing in a cup beat - hands down - I concede We ought to go out one night lord knows what would come out after a few Quick update - shhhhhhhhhh - it's stopped (4 days and counting). Lord I hope I haven't spoken too soon MelowMeldrew - my ds is also the same as yours - his obsessive and odd behaviours can start and stop suddenly from one day to the next but one thing I have noticed is that as soon as one stops, there is another that takes it's place. In place of the peeing, I now have everything being thrown into the bath - towels, loo paper, soap, shampoo, whatever's left lying around in the bathroom It s a lot easier on my nerves tho' Why, what is going on in his brain that results in these behaviours, I wan't to understand!!!! My dd (NT) 14, doesn't do these things - she is a messy, lazy creature but that's what teenage girls are. Can't top stealing sister's knickers but ds does double up and wear two pairs of knickers . We also have socks that are placed under the mattress (right under) Oooooh and washing that is on the airer - picture the tops and t-shirts all straight - I come back and there all scrunched up - why? Lord I hate winter - at least he isn't interested in my washing line in summer (yet).

I don't know what I'd do without this site - I look at some of the posts I've made and think friends and neighbours would think I'm making this stuff up - that I've finally lost the plot, gone barking mad But on here.... People just nod their heads sagely and say been there, done that; they are not afraid to share their experiences which makes you feel you are not alone in this amazing, worrying world that you find yourself in; they spend hours of their time giving hugs, advice and support. I find myself humbled in that I've learnt whatever I am going through there are people out there going through a lot worse than me. So..... Keep up the good work guys - you are stars the lot of you