patrick w

I got some cards from the Autistic Society, which i used for a while..They were like a calling card..and explained that this individual had Aspergers and may be displaying challenging or different behavior, but that it was part of their condition etc etc... They were quite good... Ocds (obssesive compulsive disorders).. are very common ...They are a way of maintaining control and safety..they are a comforter as well, especially when a change happens. They become habitualised and ritualised which is why they can happen at set times..going to bed etc.. I find that Felix (14yrs.... my son with aspergers) has these in times of stress..It is a bit like his stimming...touching everything with his feet..... etc...to sort of ground himself. (As a note on Dads and less tolerance..I wonder if it is to do with the partner that deals with it mainly and the one that doesent.. I have always been Felix's main carer...and it is his Mummy that has got uptight, angry about his behaviors..I have learnt to see that she just doesnt fully understand the complexity of his reactivities to his stress ..and his attempts to keep his universe controlled and safe..and that when this is threatened then these behaviors occur... I think you have to really spend time with an Aspie to really get what is going on for them..and to undersatnd what they do sometimes. It is so subtle and complex..Also, i find that it is a constantly unfolding experiece..i am learning all the time..that part of it never seems to stop..so i'd imagine how hard it must be for someone who is around it a lot , but doesnt deal with it at the same time..I.e they just happen to be in the same space.>Also, i think some family members are grieving in a sort of strange way the normality they expected from this person..I know i have had to do that and it can make one pretty non-accepting and often fearful..and ferfulness often leads to anger...Also, i noticed that Felix chose me as the main carer..He doesnt sort of see me as a seperate person..i have to like the t.v he likes, the music, eat the food he wants, know what he is thinking, understand what he is saying etc etc..I am sure many recognise this ..How often do i say , "i am a seperate person"!!! Lost count... My point is that it is a very involved realtionship, exclusive almost...That by defination automatically excludes others ..esp. other family members. It is a dominating relationship and can make others feel left out in the cold, or at the least , just never able to get a grip on what is going on..And as some behaviors are challenging that can be tricky..I have often fantasised about how nice it would be if the behaviors were not rage, aggression , fixation , etc etc but going around giving flowers to people ,or helpling them carry their shopping!!..Instead of the normal swearing and spitting and smashing doors etc ...Now imagine that.. ) Patrick Felix's Dad

These sound famaliar with my son... i notice that when he is having to get through something or is building up stress then the "dont look at me", or the mumbling under his breath at strangers happens.. I think he must feel very exposed and vunerable when he feels he might freak out or is about to freak out... Noises always used to unsettle him when younger, and even now (13) if he is in a mood , he will say, "what was that noise", and get quite annoyed if i didnt hear anything, which most of the time i dont.... I certainly remember how i could never hoover when he was a toddler, and i think he hears things that i just dont focus on..like the whirring of electrical equipment for example...

I think the NAS have a buddy scheme as well..i know that my son was on a waiting list and it came through about 6 months ago.. He didnt want to take it up though.. It was a befriending scheme, probably simialr to MIND

I have a 13 and half year old son with AS.. he has not been at school for years now..He has 2 friends..one he doesent really see and one who is a god-send i must admit.. But he struggles with it... My son gets alot of friendhip and company on My Space .com... It is a huge site and he chats to quite a few people who have simailar tastes in music and films..I think it keeps the loneliness at bay.....He doesent really like admiting to his AS and does stay away from AS sites, unless he is in a bad way with the rage or anxiety..My space seems to giv ehim the distance not to test his social skills too badly, and to shine in his quirks and eccentricities... There is concern about sites of-course..but he knows this and it has been brilliant for his self-esteme..I have checked it out and it looks pretty good and cool to me..but of-course that is just my opinion.. I run a bereavment forum, and we sadly have hoaxers and abusers even on there... Just have to be sensible and open eyed... http://www.myspace.com/

Thank you all for your kind replies.. i think i just wanted to see it written down that i am not alone, even though i know it... May all our kids find a way

Hello..i am sure this has been covered often before here.. My AS son (13 & half) has recently strated to expereince what i would term as an anxiety attack (or semi one)... at night . I can see how hard they are for him.. He says he "realises everything"..and becomes hypersensitive to noise, tempeature, cant eat, and cant settle (restlessness)... I would love to know others experience and what maybe they did if anything.. Thanks Patrick (it's making me feel really sad and tearful and helpless)

That sounds very simialr suze.. i have actually looked up anxiety (panic) attacks to see if it could be helpful to him..he did read something about GAD (general anxiety disorder) which he seemed to find a bit helpful... Makes me feel very helpless.. it took me a while to deal with the rage..which i dont even bat an eyelid at now and feel very confident in dealing with..now this is a new development , and i must admit i feel like i am a bit at a loss to help. Patrick (also, thanks 'board' for site suggestion)

hello, Could anyone recommend a site or forum for my 13/14 year old son. he has AS .. recently has been feeling a bit scared about his mind sate at nighttime..he says he feels "unreal", "trippy", "body is tired , but his mind is superactive"..and he is scared of his overthinking./ This tends to happen late at night.... he is looking for a site or forum that others like himself use , not one used by carers and parents etc... Thanks

My son used to follow me around the house, head-banging, spitting, smacking himself in the face, making weird gutteral noises...It has not been so extreme recently , (actually, for quite a while)..i put that down to he has lessened the stress of his daily life situation.. But it is very hard to predict... his stress levels could be rising over a period of days and then an outburst that seems to catch me unawares could occur.. The stresses are hard to see sometimes as they start small but accumulate to him...could start as something as small as the tv remote is slow..i may not even notice him worrying about it...but 5 or 6 small , but similar things and it could lead to overlaod.. Sometimes, i can see that something is worrying or confusing him...The recent mistaken release of a 1000 dangerous criminals has really stuck with him..he kept asking how it could have happend..he doesent get the actual working of it..to him in his lieteral mind, he cant see how they jsut opened the prison doors and letf it happen... This could mean, that in a few days,if a few more inputs, he could have an episode... I try and make sure i explain each sitaution i think might confuse him before it happens..like going into a particular shop ..why, for how long and what he can get or not get.. he still hates it when i go around tescoes and disapppear..he wants to shadow me..but on good days he is ok wandering.. ithink it reminds him of all that confusion he experienced in the playground at school,,when he didint know what was going on and couldnt find anyone to play with.... I do hope things are a bit easier today jb.. i really do.. she sounds like you is finding it hard to understand the situation.... She sounds pretty similar to my son..he is 13 and a half

My son is 13/14 and his raging has defiantly decreased in severity and duration...(they used to last for hours before).... Now, i dont get into it with him ..absoulutely no point..... i dont punish him either for breaking stuff by withdrawing anything..i used to and it made things far worse........ i always let him get it out somewhere away from me..... try encourage him not to break too much stuff,and tear bthe newspaper up..but even normally saying anything isent a graet idea... He always comes out of it . and recently, in 10 mins or so.... Sometime later..not after he has immediately calmed down or it could start up again... i try and talk to him..always by first apologising for upsetting him (even though 99% of time i have done almost nothing), he says why he got cross, and often apologises , which is just amazing.. I say we will get it right oneday and not to worry too much about it as i know it gets him down...He has told me how much he hates getting in rage, and so i always try and focus on what was positive about how he dealt with it..not breaking anything and just hitting the pillow or door..... It's pretty hard , but it does work well for me . I hate seeing him like that.

Like Oracle's son David, my son Felix had a massive breakdown at 10/11 and became school phobic... you couldnt even say the word school/education without him freaking out... if you showed him a book to learn from , he threw it out of the window or ripped it up... That was nearly 4 years , he is around all the time.... but i dont for a second regret it..It's just different way of life that's all... He always struggled badly with the pressure of school, which he did for 6 or 7 years. For him, it was too much pressure to get through such a complex social set up as school..for others, they might thrive within the certainty and routine............ I felt i had been waiting since he was at reception to take him out of the system, as it always felt just 'wrong' and against my instincts for him to be such an enviroment. that confused him and unstteld him so badly.. However, if he is clever and stubborn , like my son.. then it may be that you will losse any control over education for him... my son gave up on tutors a long time ago and doesent do any formal learning.. He follows his own way, which seems to be in a creative vein...music, cartooning, reading, film history and script writing etc.. It does worry both of us a bit (my son and me that is), but he is about a thouasnd times happier than those sad years of 'paleness' and 'despair' that marked his school years.. Remember that it is quite traditaional in history for children to receive education at home or none ... this 'schooling' for eveyone is only a 20th century invention ( a very good one for most mind you). I am finding out like most of us, that there are many different ways of being in the World..........Another trouble for me is the busybodies and nosey parkers who are always tutting about him not been at school... They conveniently forget the head banging, semi-self harming , the awful tics and spitting and gutteral noises that he used to do through stress... his whole body looked unhappy... they forget that and just see an irresponsible parent and a 'crazy kid'......Some of them dispute he even has AS.....

Dont know if helpful..my AS son sleeps day and up most of night now..he is 13/14...But when he was small, i used to find books on tape extremely effective... especially, the hobbit or other bbc classics.. the voices are soporific and calming... i found he drifted off with these on..otherwise it was pretty touigh... he never really slept all the way through though, and that's where the sharing a bed became a bad habit as i was too tired to go and start the whole thing off again.. but the tapes were good for him...they did work

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I had a tough time with my son..now 13/14.. he slept with me for a long time...i used to have to face him in bed so he could see my face..poor little chap..... . but, i do think now how i would have been firmer when he was younger... and kept the boundary..it started off pretty harmlessly and then he just felt it was normal; he eventually just dident want to be in my bed anylonger... at about 10.. but it was a good few years that he was in there... or i had to put him to bed in his bed..getting in it and waiting till he fell asleep and then sneaking out.... By the way, i mean everynight in my bed for years..not just for a cuddle or to watch tv, or just because he wanted company every now and then..that's harmless and delightful..it will wear off,so, like evryone else here..grab those moments... I cant even get a cuddle from my son now...And i really miss that.

P.s I often feel abused ..... it is just so extreme sometimes..the level of care i have to provide and the outbursts..... Are his stress levels at a high level at the moment? My son is always worse when putting himself underpressure... and again, been a teenager is tough.... He nags at me because i dont wash up properly on bad stress days, or that the place is a s**thole.. it obviously overloads his senses, so i understand.... but he is a bit like a bullying husband, which is weird as i am a geezer myself ... especially when he is pathologically untidy...... he also grumbles about my cooking sometimes as well..... it can beat me down, but i try and work with his stress levels, as the complainng and swearing seems to be linked with this..and maintain my sense of seperateness.....

My son swears pretty badly at me and when out and about.... it does get me down often, especially in shops..but i know i can never confront him on the spot unless i want an escallation, but that has been hard. I have also had futile conversations about "how they are only words"..etc/... and "they find my swearing offensive , but i find their clothes and hairstyles offensive"...etc etc etc...... In a calm moment i have said that it get's me down and it is good to be able to control swearing in certain situations, and went through when some of those might be in his mind.... i also swear a bit, but do exactly this, and was trying to explain the aggression in swear words when used too often, and how others react to them....He genuinely says he cant help it or control it , and likes others swearing etc.... . Anyway, we were in a shop yesterday in Tooting and i accidentally let slip that the chillis we were buying were "mother****ing hot"..... And, he was really embarrassed , which was brilliant, cause i could finally get him to see how there are situations when one must tone it down or refrain... Also, at that sort of age, the teenage thing could be kicking in, so tricky one to communicate that we might as parents actually have feelings and opinions. I swear he thinks i am a machine half the time.... It is a tricky one though...and isnt there a differnce between loving someone but disliking something they are doing.. i think it sounds as if it has really beaten you down to the point of aversion , and i think that would be pretty normal if you are facing that situation daily...

This is a bit embarrassing, and i hope i am not taking away from the seriousness of your post...cause i understand that sort of stress...mens toilets are pretty grim..and i always used the disabled toilet when i could..only takes a few minutes.. and it was less stressful..my son used to touch by mistake the urinal etc..so it was really stressful... Anyway , here's the embarrassing bit..... i am a 42 year old man, and i have pretty much given up standing up for a wee nowadays..i nearly always sit down...and boy oh boy, let me tell you...what a releif..wish i had started that a long time ago..... But, i guess i have the option, which is what you are worried about for your son..so sorry if i am being flippant. patrick

Thank you all very much again. I really needed that reassurance.. It is effectively just me and i sometimes just feel small and childlike myself. My whole basic approach, as it is for anyone, is to hope that they are ok and aiming towards happiness for themselves in their lifes. If he feels comfortable staying up all night , then that's fine by me,+ he is a creative being and that fits the mould as well... Thanks Patrick Felix's Dad

Gosh..Thank you so for much for your lovely replies... Actually, i am pretty content with the situation personally (am a bit of an odd ball myself); it is just that i feel like i am making it up half the time,, and really wanted to confirm that i wasnt worsening Felix's position (not that he would let me do anything about it mind you..bit of a spectator sport my parenting at times )..As said, and reiterated by your posts, he does seem much happier than before.... ...Thank you for for the reassurance you have given me, i needed that. (and yes, he is a bit of a goth....dyed his hair black....backcombed.... listens to The Cramps and The Birthday Party and Gunclub..is trying to start his own band called "fear of Jesus"..good idea about lyric writing).... i think he is brilliant ..just tough work and super -high mainteneance........This is a weird thing to say...but does anyone feel that their AS kids (or young adults) dont really get that the main carer is a seperate person..not literally , but in a way i cant quite find the words to describe... I swear Felix sees me as just an extension of him sometimes.. He's always been so frustrated when i dont feel things like him; like the same foods or tv programes, or dont undersatnd what he's saying, or dont jump to his immediate beck and call... I know some of that is just average, but it has always been quite extreme and claustrophobic at times.. Am i making any sense at all or should i shut up now... Anyway, thank you all again..that's great.

Thank you... I dont mind his sleep patterns..and in a simialr way, he does seem more settled... i just wanted to see if it was common (which i suspect it is), so i can relax a bit..... I dont mind the outburts..they are a thousand times better than they were when he became school phobic... and i understand their struture..(his mum used to call ambulances and i would have to try and get the whole thing calmed down as it freaked him out more).... he also has worked very well with it , he has told me how bad it feels to feel so angry, and often after an outburst will come through and say sorry and talk a bit... i dont know many adults who would do that.... me included probably.. i just worry for him of-course, like all of us..for his future and his happiness... feel i'm just making it up half the time... i had a bad history of depression (25 years) , which incredibly i have beaten...but somedays it is hard to keep bouncing back in a positive mannar.... letting go is so hard i find. My experience of school situations is that it can work both ways.. For Felix it was a disaster from the begining of reception.. and personally i am glad he does not have to be put under such awful pressure..although others can handle it i am sure , and benefit from school..the structure, routine etc... I dont worry for his mind...it is amazing..i worry about his loneliness..he has 2 freinds , but only really sees one... he is older and is very patient and understanding of Felix's social blindness..still takes my constant brokering and mediating though...... He uses the internet as a main source of company..... really into his music and obscure horror films.... I think he would like to meet a like-minded and music-orientated friend though.. i have to like what he likes (of-course.. the "i'm a seperate person" stand is very well used in my home), and luckily we have tons of music, films and humour in common..but i'm his dad etc etc. (Sorry , seemed to have gone of a bit there....actually, i realise that i never speak to anyone about this stuff, and i could suddenly talk all day!!!....but wont>>>)

Glad that went ok. I have a ridiculous history of medical situations... i have a 13 year old boy with AS (i also say HFA as fed up with the "what...." response)... the worst being trying to convince St.Thomas to bump him to the head of the queue when he split his finger open and needed surgery... they wanted to put him on the list and he would have to stay over night and maybe for a few days until he came to the top of the list.. Yeah... right..as if that was going to happen...Luckily there was a brilliant doctor who knew about As and made it happen..and my son conveniently semi-trashed a cubicle which also got things moving.. Bit heart breaking though, cant seem to handle the pressue or the sudden changes and uncertainty.. it took me 4 years to get him to a dentist ,,,, i tried about 10..half of which he just freaked out in.. got there in the end though, again via a dentist who had experience with AS..

Hello, i did post here about a year ago, but am one of those go it alone types.... keep things that get me in the heart very close..getting better at being with the vunerability though.. I have a 13 /14 year old son who has Aspergers. He lives with me, (seperated from Mum), but has a good relationship with his mum (as do i).. ... He hasnt been to school for about 3 or 4 years..gave up on tutors about 3 years ago.. but he is absoultely grannite- like in his opinions...shockingly clever..basically school is off the menu.. I am sort of ok with this..he had a terrible time at school..mainstream and specialist, and it was too much pressure.... Most importantly , he is passionate about many things... What worries me at the moment is that he has developed a bad sleeping pattern..he stays up most of the night and gets up at lunchtime... and he got mugged about a year ago and doesnt go out much and never by himself..He says he is ok and feels as ok as normal, but it really worries me..does anyone recognise this pattern? Patrick