CarolJ

My DS was recently excluded from school becuase of hitting because we had implemented a no hitting plan usign pecs at home it transferred his hitting into the school. But school stopped doing the plan and I wasnt aware until he was excluded . He was using it as a means to gain attention and to communicate. It was learned behaviour. basically he realised that if he hits he gets fireworks and this negative attention reinforced the behaviours. He hits me, my partner, the dog the only ones he doesnt hit are his sister and the cat! He doesnt have any verbal ability and we communicate via PECs so verbal threats are useless. I just show him "no hitting" symbol and turn my back on him and walk away. He too doesnt like my attention being given elsewhere and thats when he hits me or the person I am talking to. Its like he wants me to give him full attention all the time which is impossible. I try to give him all the attention I can but he has tolearn to accept that there are times when he cant have my full attention. He responds really well to praise as all children do. I find that praising him when he is calm and good really go a long way. symbols for hugs and happy really help. Mummy is happy! One of the hardest things I find is that my son often hits me when I am out in public and peoples reactoins are his reward. He still hits and it hurts but hes finally realising that I will immediately stop what I am doing and walk away from him. He sometimes hitswhen I am playing with him and giving him full attention which is why I think its a way of communicating. He is learnign that if he hits whatever we are doing stops and I walk away. At first he started to hit more and thats why I had problems atschool but hes now learning hitting is not acceptable. Its been hard going but perseverance has paid off. I know the hitting is also done out of sheer frustration but he has to learn another way of communicating. I dont know if the PECS symbols can help a child who is verbal. I find with my daughter the more language I use the less she listens. She doesnt hit but she argues continually as a way of keeping my attention. Its a pointless frustratating exercise sometimes and I have to tell her Timeout and I walk away and she realises that mummy isnt going to argue anymore. I wonder if I should use a PECs symbol for "No backchat"? Or maybe a symbol for "mummys time out"

Hi my DS doesnt sleep but hes still a nipper but my partner loves his sleep. I have never known anyone to sleep so much. Hes always been like it according to his mum. She even had him tested for narcolepsy (think thats what its called sleeping disorder) when he was younger but tests were negative. He just loves to sleep he can fall asleep sitting up. His diet is okay he doesnt like vegetables very much and tends to go for sweet and sugar (especially chocolate) he drinks lots of coffee and yazoo milkshake. Hes 32 and very laid back and chilled but he loves his sleep. He has lost jobs before in the past because he found it difficult to get up. I always thought that those on the spectrum had trouble sleeping. I did once suggest to him that perhaps the sleeping was tied to something other than the fact hes a lazy sloth type person This thread really caught my eye thanks.

Just to say although I cant really contribute much in this area of the forum its invaluable to me to see the viewpoints from adults with AS. As an NT parent its really important to get an insight into how someone on the spectrum thinks and feels. Keep posting I am still learning about AS. I have a partner who has strong AS traits but doesnt have dx. He has said he doesnt feel the need to get dx. My view point is that anything that helps you understand yourself is a good thing. Or is it? Will try and drag him away from his online games and new computer that hes building to see if I can interest him in this forum. Take care folks.

Bid i am sooo pleased to hear how well auriel is doing. What a total star and what a proud mum you must be. I hope one day I can start a similar thread. I noticed on another thread you said the turning point for Auriel was residential school. I am hoping to get my boy into one hes only 8 at the moment so a few more years at home yet! Am chuffed to bits for Auriel and you as his mum. dunno about the gin? Mothers ruin? Time for a knees up in batcave methinks!

oops sorry mumble I just realised you are a "she" not a "he" - sorry <'> I must say you definitely appear to be a "chip off the block" - notice i left out the "old" there bid?. Good luck xx Bid can I give you an example of where I had to be direct. Last week my daughter had a problem with a boy with autism picking on her at school. She goes to a SEN school for moderate difficulties. My daughter has told me in the past that her teacher "confuses" her. She rambles on using a lot of langauge and my daughter cant take it all in. She gets very stressed example last week the school had an inset day on a Tuesday which we knew about but the teacher had said to the class on the friday "see you all wednesday". My daughter thought that meant that she wasnt to go into school until wednedsday and we had a big fight monday morning to get her to go to school. She said she wasnt supposed to go into school and really started getting into a meltdown. In the end I had to phone the school and ask if they were coming in on the Monday. I had to say to my daughters teacher that her way of speaking directly caused confusion in my daughter and she was to slow down and use less language and be more direct. I didnt enjoy saying this but I had to be honest with the teacher and tell her what was happening because my daughter really didnt like her teacher very much. She also doesnt appear tolisten very well and cuts you off when you are speaking. I had a choice did I allow my duaghter tosuffer and be unhappy which would affect her education or did I explain to the teacher what the problem was. The teacher asked my duaghter why she didnt tell her at the time she was being bullied,and I had to explain to the teacher about fight or flee response. when someone comes up to you in your face and verbally abuses you for no reason you dont always react rationally plus my daughter didnt want to show emotion and that she was upset to this boy. The teacher coldnt understand why my daughter couldnt go and find a teacher. I had to explain that part of my daughters problem is communication she struggles tofind the right words and it gets worse when she was upset. And shes not very good at judging when she can interrupt someone especially an adult. I suggested to to my daughter that she write down on a bit of paper when she gets back to the class if there are any incidents and to pass it to her teacher. I have found that shes able to write things down that upset her rather than talk about them. Which my daughter seemed happier with. I found that her teacher was not very tolerant of my daughter not being able to verbally express what had happened and Ihad to say to teacher well its my daughters way and the way she is affected by her AS, just because you expect her to do something a certain way doesnt mean she will do it. This is the example of the straight talking Bid, a choice between my daughter's happiness and her teachers feelings, I really had to be honest. I dont enjoy it but I have found it necessary and unless someone is aware of how they affect others how can it get better?

thanks Mumble, damn my ###### spelling I meant to say "I can perhaps see a "them and us" kind of outlook from "some" AS adults." not on this forum but in other places. But I have also got to say I see the truth in what you write. Neurodiversity and acceptance is the key. And we are all a product of our environment and upbringing. Pre-conceived ideas and social conditioning all serve to influence our attitudes. I too make mistakes and misjudge others. Its part of being human. Thanks for your enlightening response. I say people are like onions we are made up of many layers and some of them can make you cry I only hope that one day my son or daughter explain things to me the way you just have. Hugs

Well i remember you scoring very highly on the online cambridge autism research unit test! Well done for getting dx and finding a bit more out about yourself! Bid I agree that assertiveness and agressiveness can be confused - its not about riding roughshod over others feelings. I am blessed with high emotional Intelligence which allows me to strike a good balance and know how to deal with people. I always apologise beforehand when I state a point but I explain that I really have to be clear in what it is I want and also like to make sure I am agreeing to any points made. I find straight talking refreshing. Its about knowing when the boundaries are crossed into rudeness and unfortunately many with AS struggle with this. My daughter and fella typically come out with some choice statements. But because I am aware of thier AS I am obligated to try and help them understand the impact of their words or actions. I find that some people really cannot deal with straight talking even when its done in a non-aggressiveway. But havign to stop and think about everything you say and do is soul destroying and can make someone with AS anxious. I think guidance and understanding is the key. I agree that sometimes people with AS can place themselves in danger by upsetting the wrong person. But if someone is aware, ie disability support worker, of the AS why on earth is behaving like this? I really feel for mumble as I have seen the same confusion on my Daughters face. I have said to her have the courage to be true to herself. By learning from those my daughtertrusts shes able to avoid repeating the mistakes in teh future its part of learning how to deal with this world she lives in. Which is why whatever it is that mumble has done he has the right to be told so that he wont repeat it again. Yes your words made perfect sense i bow to your wisdom hugs x

Hi BD I kinda that that was exactly what I was trying to say. Just because my partner has AS doestn give him the excuse to ride roughshod over my feelings. If I know hes done something as a result of his AS I calmly explain to him how i feel and why I feel when he says or does something to upset me. He then takes this into account if a similar situation rises. I get the right to voice my hurt and anger and upset but in a constructive manner not a personal attack. And then I allow him to apologise (he struggled with this at first becasuse he said why should I apologise for being me?) I adopt the same approach with my kids too. I wont allow DD to use her ASD as an excuse which she has tried to do and avoiding responsibility for her actions. My DS well i know he takes the P*ss and I wont allow him to get away with stuff when I know he knows better. Mumble, you wont know what you did unless you ask and are answered honestly. Try putting it in writing all these discussions are probably confusing the issue I know it does me. Write a letter or note this person, saying something along the lines of. Mumble a heartfelt apology goes a long way and its much easier if its done in writing. Perhaps you can buy her a little Im sorry gift or "card". We all make mistakes now and then, even us NTs. But its up to those who know about your AS to try and help you as much as possible not judge you or take it personally. Its perfectly clear that you are really upset by this. I am sure if this lady knew this shed feel differently. Hope this helps p.s. just correct my dreadful spelling ...

If you will allow me to put my pennyworth in. I have to say that one of the reasons I like this site even though I disappear for a while is because it has very positive feel. This is from somone who has had accounts deleted on various sites including adult sites becuae i upset people I think I know the point that canopus is making. From my experiences of ASD sites they can be almost anti neurotypical as if AS is the "master race" very aggressive and attacking any point of view that does fit in with their own and to voice your views or criticisms is taken as blasphemy. I can see how an adult with AS can feel as if they have to behave in a neurotypical way. Yes I know that not all AS adults feel like this. I covered my views on this on another thread about accepting the autism in my kids. I as an NT parent have been attacked because I spoke of my sons regression into autism following his MMR vaccine. I was accused of not loving my son and by trying to improve certain aspects of his autism that I hated my son because of his autism. Unfortunately there was a grain of truth in this that even i struggled with. Its not that I didnt love my son I just found it hard to accept the way his autism affected him but that was my problem not my sons. I dont glorify my sons lack of speech or wearing nappies or smearing habits but I accept them as part of what he does. My acceptance caused me to go against my own social conditioning about how I believed others expected my son to behave. Its about losing the herd mentaility and stepping outside of pre=conceived ideas and beliefs. And I felt guilty about not doing everythign I possibly could to "normalise" my son. I felt as if I had failed as a parent. I can perhaps see a "them and us" kind of outlook from AS adults. I can see how the site could be viewed as a bit fluffy sometimes but the site aims to accepts all point of views and trys to keep a balanced view without anyone feeling intimidated or bullied. There are many sites that allow this kind of personal attack and I unfortunately have been banned from a few I think the sites tolerance and moderation style keeps it positive and friendly. I think its sad that some adults with AS feel as if they cant post here as hearing about AS from those who are AS is very useful for parents like myself. Btw my part time hobby is pole dancing, so anyone fancy a spin, let me know!!! I even have my own youtube account! Kudos peeps

Are you me? I too gave up on the nicely softly put others feelings before my families needs and I dont think twice now about asking for what I need. I found a great way to get my point across was in writing. When its in writing social services cant ignore it they have to action it or explain why they cant action it. The words "pen is mightier than the sword" is very true when dealing with the SS I love it when they try to browbeat me by saying I am asking for too much and try to make me feel guilty for taking away from others. Great ploy you need help and they are asking you to consider other peoples plights? If you dont fight for your family nooone else will do. It actually empowers you and you gain respect. I am not running for Xfactor i dont seek to be popular I seek to get my kids the services they badly need. Dont get sidetracked and stick to your guns.

Wise words bid but at the same time my experience of AS, especially with my now AS fella, is that I explain to him how his words made me feel. Unless someone explains this he will carry on his merry way and if they react with upset and anger (which is how I first reacted before I realised it was because of his AS) my aggression would trigger defensive arguments from him, he then becomes defensive in return because he doesnt know why the person ie me is acting like this. If someone is supposed to be supporting someone with AS surely it also includes explaniing about social faux pars!

Yes its the NT way rather childish and petty i know many prefer to to seethe in silence and martydom and can get spiteful without you knowing why. As an NT with adopted Autie traits I know exactly when I am upsetting people. Well i think your last paragraph tells me that this person doesnt understand AS and how it affects people. If she refuses to accept your explanation and is ignoring her role as your support then thats highly unprofessional. One of the best ways I find to truely communicate with people is through writing. an email, a letter a card sometimes people listen to the written word more than the spoken because written words arent so emotional. Try putting your case down in writing and if she still sulks then thats her problem not yours.... good luck.

I have to agree here. I myself have adopted a no-nonsense approach to others its purely that I lost my NT social nicely with sugar on top beat about the bush approach and adopted a direct outspoken and straight to the point approach. It saves time and if I upset people then tough. When I did it the NT way I found I was the one who invariably felt as if I wasnt getting anywhere and it allowed others to delay and ignore me. Eventually I realised that given the choice between myself and my kids being upset and others, well there really was no competition. I do apologise for for my blunt approach but its usually before I make my point so I prepare them. My partner is on the spectrum and he has shown me how confusing he finds social chit chat and indirect social interraction. Hes always upsetting me and others and I have to tell him that he has. Now he doesnt mind but the confused look on his face is priceless

Hi folks I want to share my thoughts on the way NT parents can sometimes struggle to accept their childs autism. This is written from my own perspective you may find some some points mirror your own experiences. Firstly I quote the words of James Williams. who lives in Northbrook, Illinois, 19 years old with high-functioning autism. These words to me sum up how I used to feel about my childrens autism. The pressure from society to normalize and stop autistic behaviours. To almost hide them because they made others uncomfortable. Autism is unlike any other condition, most disabilities have physical signs and disability can be seen, autism is different. NT parents give birth to apparently NT children and over the course of their childhood and infancy the autism starts to present itself and eventually diagnosis can be sought. Others like myself who have children who regress lose previous acquired skills and take on autistic behaviours. I firmly believe there are two types of autism. One is clearly genetic usually Aspergers high functioning autism. The second type of autism is triggered by an environmental event ie viral illness, accident, birth complications, vaccines. This second type of autism is the one termed as Kanners. One of the saddest things I have found is that because of the umbrella of autism is that the Aspergers autistics can get very defensive over their autism saying its part of them not something that should be fixed and I don't blame them. When parents like myself say we want interventions we are not talking about a cure "curebies" we are talking about tackling some of the obvious and dangerous and painful aspects of our children?s autism. Some people see the attack and the desire to improve the lot of the lower functioning autistics as an attack on autism itself and the arguments can get very heated and spiteful. I have seen Aspies attacking neurotypical parents and accusing them of hating their own children. I want to let you know that parents like myself love our children and only want whats best for them. Its not about changing autism. Its about improving the quality of lives for our children who cannot speak so they can make choices of their own or free them of the pain that many of them are in. Unfortunately as we all know the world is a tough cruel place and we know the problems our children have set them at a huge disadvantage. One of the biggest worries parents have is what will happen to their children if the parents were to get sick or ill or die. This is my greatest fear I feel as if I have to live forever. The shock of first realizing that my son especially was autistic was like grief. I had to grieve for the child I thought once I had done that I grew to love and accept my son the way he is ?autistic? it took years for me to fully accept this. I realized the reasons I found it hard to accept my child?s autism was that I had been conditioned by society to think in a certain way. My social conditioning had caused me to grow up with certain expectations. Its one that most people have. When my son regressed into autism I found people began to melt away, friends, family. This was a hard lesson for a sociable NT as myself to accept that society had indeed turned its back on myself and my children because they were different. I cannot tell you how angry I would get, how upset, how I repeatedly struggled to get people to accept but in the end I realized that they would much rather ignore than accept and I was fighting a losing battle. I knew that by repeatedly trying to gain this acceptance I was in fact denying to myself the way my children were. When my son was younger his autism was not so apparent and I could almost pretend he was normal and tried to discourage his autistic behaviours in public so as not to draw attention to him. I grew angry when people stared at him because he was having a meltdown. I tried to diffuse the situation and remove my son so as not to disturb others. This was the social conditioning I had been raised to believe. Now if my son displays autistic traits I love him for it. I encourage him to wave his hands and squeal and I totally ignore any onlookers. I am proud that he is such a happy child and the fact that he is so free of the social confines that bound me as an individual. We all pretend to a certain extent. My son really showed me what it was like to be free of that social consciousness and it?s a great place to be. He just doesn?t care. I often get told by experts still "he needs to comply with society". Why? For whose benefit yours? Mine? His? Societies? He is his own person and he is autistic. My own experiences with my son. His behavior is pretty challenging and when I am out and about with him he often kicks up a scream and people often stop and stare (because he is autistic he doesn?t look disabled) they just assume he is a being a little brat. Then when I tell them he is autistic they start saying ?awwwww poor thing?? and I get angrier my son is not an object of pity he is a little boy who is different. This was the reason I put my hair into braids I got fed up with people pitying me and my son and if they were going to stare at us in the street I wanted to give them something to stare at. You don?t see many white women with braids and it certainly gets you noticed. I rarely get anyone offer me sympathy these days as most people don?t know how to deal with me unless they can pity me. This amuses me. If they stare now I say to them ?Do you want a picture? As its rude to stare at a disabled child? that normally embarrasses them. I walk with my head held high I am proud of my son he?s better behaved than a lot of so called ?normal? kids. At least he has a reason. There are things I would like him to do ie learn a form of communication, not necessarily speech and stop hitting because it hurts. But I have realized I cannot change him he is the one who has to decide he wants to do something. I can only encourage him. He will always be autistic. I want him to acquire as many skills as possible to have a say in his own life and be as independent as is possible. This isn?t about my trying to ?normalize? its about giving him a voice to make his own choices. I wanted to share my thoughts and feelings with you all. There were days when I felt as if I had to choose between society or my children. It wasn?t easy but I managed to overcome it. Having given up my social conditioning I am free to love and accept my children the way they are. If others cant that's down to them. I would welcome thoughts from any others on this especially those on the spectrum themsevles!.

I recently applied for my twos dLa using the online way it was quick and easy and you can save the draft. but dont do what I did and forget the password I printed and saved a copy of the form to my pc = when i submitted it I then photocopies documentation and sent that along with copy of the form. I gave them as much supporting evidence as possible, we all have mountains of paperwork on our kids, just give them as much as you can. Alot of the questions are jut repeated its boring but doing it online was much quicker and you can cut and paste if you have repeated questions. They are a nightmare. but do try to paint the worse ever day possible and use that as a basis for all your answers. good luck

hey everyone its good to be back I hope I can share my experiences with you all and give you support. It took a long timebut I really struggled to accept my kids as autistic and stopped wishing them to be NTs. I now love them and accept them the way they are. Its society that still has a problem but hey thats their problem not mine! I always loved my kids but found it difficult to accept their autism. I had to fight social conditioning and really be honest with myself in order to fully accept and love my kids. <'> >< My son is so special I cant even begin to put into words the way i feel about him and the love he shows me even though he cant talk. My daughter has an attitude that would make Kevin and Perry proud. Love her to bits she has a wicked sense of humour

Nice to be back

Hey BD he walks around with a look of shock on his face most of the time lmaof - hes certainly had his eyes opened to a lot of things. Hes happy enough as long as I dont try to rush him he doesnt like being rushed he likes to take his time plod along and and do things just so - he cant jump from one thing to another it really upsets him = whereas I am all over the place! Hes bought some calmness to the chaos of the house, which the kids seem to appreciate. Kaythrn, we always have to fight it never stops. Its good fun the more you fight the tougher you become. I have learned from the adversity I have faced and become a much stronger person. I am much happier now then I have ever been. Yes bid tis me ASM just popped in to let you know I am still alive and kicking!!

Guess what BD I have a boyfriend now and hes on the spectrum - cant believe it - he scored 87% on the Cambridge ARU test! Hes very geeky, loves, computers, online games, LOTR and collects stuff like he has to have the whole series of DVD in a collection - hes so methodical and finds the chaos of my house hard to bear but hes a diamond. I am the only NT in my house - Problem is he finds it very difficult to express emotion apart from anger he cant put his emotions into words at first Ithought he was cold and didnt really like me very much but one day after he told me about his dad and what his dad used to do the penny dropped and I got him to take an online test! He drives me crazy and I drive him crazy but its good cos we understand each other. Hes not had successful relationships in the past and he could never figure out why. He says some hurtful things sometimes without realisign the impact it has on the listener. Hes totally unaware of the effect of his words! this is what alerted me to the possibility of his being on the spectrum originally!

Pearl neither do 99 per cent. of the people who post there, I certainly never knew what I was talking about... I cant imagine much has changed. Theres enough material in that batcave to keep a convention of psychiatrists busy for a year! Present company excluded of course

hi pearl, and thanks! Oi oi BD hows BD jnr? Yes I blasted in today to let you know I am still alive and still fighting the evil ones at SENCO - All i can say it felt good to say my piece and to fight the injustice against my son. I am getting fiesty in my old age!

Still sniffing the pritt stick I see bid, How the devil r u dahling? ----------------------- the words "life is too short" and "you cant please all the people all the time" spring to mind. I gave up on social waffling along time a go. I have adopted autie traits by virtue of my babies. I gave up on a lot of people friends and family who couldnt accept the way my son is now autistic. Life is so much simpler. I know I upset people cos I am NT but tough. When it comes down to my kids welfare and happiness and other peoples hurt feelings, theres no competition. I now live by the following rule. " Me, I like to call a spade a spade. I'm not particularly outspoken, I just think it's confusing to use any other term for it."

Hello folks and peasantry, Well I just wanted to share with you the events of the past week. My little boy who is 8 was identified as needing 1 on 1 support in a specialist autistic school. He has always hit as part of his autism. Its a way of gaining attention and communicating, which has been reinforced into learned beahaviour. I knew that the school had applied to the LEA for funding to put in 1 on 1 support for my son. Last wednesday evening Ihad a phone call from head who said that DS was not to return to the school until fundign had been agreed by the LA He used words like he had assulted his teacher, unacceptable beahviour! I unforutnately did not take the call as I was shopping. so had towait until the next day to call school back. Head was very unhelpful and defensive and refused to meet wit me until a review meeting scheduled for the followign wednesday he told me the exclusion was non-negotiatible and he wold not consider anythign until the LA had approved extra funding so I should get onto them! Well needless to say Idid a bit of homework, contacted the LA and spoke to the chief bod who said they were not happy about being held to ransom for extra funding. In fact he said why I was speaking ot him asthe funding is usually sorted between the LA and school parents were not involved! Needless to say the letter which followed from the head, broke every rule in the bookand also contravened the law under Disability discrimination Act. My son was being excluded because of the way his autism affected his behaviours and the school knew and agreed to this in the meeting we had subsequently. Had the meeting wednesday and i have to say I didnt hold back. I had social worker/ASD adviser from LA and parent partnership rep there. After listening to what the school had to say I listed all the legislation that they had contravened and said they were breaking the law and had even contravened their own SEN policy. I said to them if they continued with the the indefinite exclusion then I would have to pursue legalaction against them. The school is a specialist autistic school. which is part of a group who are growing and gaining a lot of recongition within the field. I asked "how would this look in the papers, autistic child excluded from autistic school because they were exhibiting autistic behaviours" basically I wanted them to know how how it felt to be blackmailed. That afternoon I had a call from the head invitingmy son back to school the next day with 1 on 1 support in place which the school had managed to locate the funding for in lieu of the LA agreeing the funding. So boy is back at school and happy as am I My daughter is now attending a school for moderatelearning difficulties she now has the dx of HFA. she was being picked on at school by an autistic boy - so I had to go to her school yesterday. Its never ending. I have learned that I cant afford to be nice and beat about bush. I have learnedfrom my kids time is precious and I am direct and clear. I know I sometimes upset people but at least they know where I stand. Hope you all are having a good one. weekend is looming. Hugsa all x on a different note my friend has just called me in tears her dd is beign bullied by a kid with autism.... its never ending....I told her to access the schools anti bullying procedures and stick to her guns. I think sometimes schools dont take bullying seriously enough. Anyone got any advice, aside from kicking a few buts?

I personally wouldnt follow this programme, the idea smacks of brainwashing! With my son he needs to be shown repeatedly in order to learn a skill. There are also the metabolic issues with autism which must be addressed too, the sensitivity to foods, immune system questions which have to be addressed (thats why so many parents follow diets). To claim a "cure" is wrong. All I want for both my children is for them to learn skills in order to cope better with life.

This has to be kept in the public eye - people need to know how vital proper provision is for the wellbeing of autists. Lets hope they continue to keep it highlighted!