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CarolJ

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Posts posted by CarolJ

  1. Posted · Report reply

    Oh yes this bit I recognise definitely. My ds will not wait at all and will come and hit me if I'm taking too long to talk to someone or looking at things in a shop or museum or whatever. The only thing I manage to achieve sometimes is to tell him the consequence of him doing this will be xyz or perhaps by distracting him but actually the only thing that usually stops it is if I move on. Interested to know if anyone has any other tactic.

     

    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 :whistle: . 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" :thumbs:

  2. Posted · Report reply

    My son sleeps too much ! He is aged 16yrs and falls asleep at school. After he has had a sleep, for about 20 minutes or so, he is bright and more willing to enagage. I have taken him to the doctor and he will have some blood tests on Monday. The best she could offer tho' was send him to bed at 9.00;pm !?!? It is referred to as somnolence, which is different to fatigue apparently.

     

    He goes to bed at 11.00pn and sleeps through till 7.00am, has a very good diet, all organic, chicken, veg, oats fruit etc. Does anyone else have this problem, and what has been the result ?

     

    Ann

    :unsure:

     

    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 :rolleyes:

     

     

    This thread really caught my eye thanks.

  3. Posted · Report reply

    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.

  4. Posted · Report reply

    About half way through last term Auriel decided his college course wasn't for him, so he's now having a gap year before going back in September to do his A2s...

     

    Anyway, since then he's been working pretty much full-time, 6 days a week, at his old part-time job.

     

    I'm so chuffed, because he has stuck at it, and having seen him in action, he's doing really well :notworthy:

     

    He's also doing all his own washing, and paying housekeeping :thumbs:

     

    Ooooh, plus he's now sporting a full mohican which he's coloured black :o:ph34r::clap:

     

    Bid :)

     

    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!

  5. Posted · Edited by CarolJ · Report reply

    oops sorry mumble I just realised you are a "she" not a "he" - sorry >:D<<'>

     

    I must say you definitely appear to be a "chip off the block" - notice i left out the "old" there bid?.

     

    Good luck xx

     

    BUT,BUT,BUT...I think that there is a very real danger that if this comes across as 'aggressive' rather than 'assertive', this doesn't help our kids and can even end up in some really awful situations.

     

    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?

  6. Posted · Report reply

    No. Maybe some, but definitely not all. ASD individuals are as different (or alike) as NT individuals. ASD individuals are just that, individuals. My DX does not make me a certain way which is somehow different/detached from others. Everything I do is human behaviour, by relation of the way a DX works, everything I do comes from an autistic perspective, but that is not to say that everything I do is autistic. Our identities are composed of a whole conglomerate of influences, constraints, possibilities and potentialities. Depending on how we choose to think about identity, we have some agency in how we act within the particular structures constraining us in a particular situation and set of circumstances. I am not just Mumble the AS individual; I'm also Mumble the overly determined PhD student, Mumble the sister of someone having a tough time and various other Mumbles beside. These are not separate and easily constrained identities but ones that interact with each other. I certainly don't think in a them and us way, because that only (from my perspective) serves to be self-constraining allowing me only to be my autistic identity, rather than allowing me to be every other part that makes up who I am.

     

    If I set up a false dichotomy of NTs as 'them' by saying they don't understand/they stop me speaking/they ... then I have to accept that I have also set up an 'us'. I can't get cross at 'they who don't understand' at the same time as being annoyed at being thought of as 'other' or less important in someway, because I will have set up (or at least reproduced) the very conditions allowing that to occur. Current genetic research suggests that ASDs are part of the normal vast spectrum of the population, not something to the side of it. Simply (whether there really is anything simple about it), we fall to an extreme of that population where we may require support to live within and interact with it, hence why a DX is valuable. But we are still part of that population, making them and us a false belief. I am living in an NT world: surely, better than accusations is a situation where we can be tolerant and responsive (where appropriate) to individual differences, accepting of differing opinions, and willing and keen to learn from the experiences of others rather than assuming that we 'know' how something is for other people?

     

     

    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 :crying:

     

    I only hope that one day my son or daughter explain things to me the way you just have.

     

    Hugs

  7. Posted · Report reply

    Ooooh, Carol...you won't know, but I was dx'd with AS last summer!! :clap::dance::hypno:

     

    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!

     

    Carol, I agree to a certain point that as advocates for our children we have to stop worrying about 'upsetting people' so that we can get then the provision they deserve.

     

    BUT,BUT,BUT...I think that there is a very real danger that if this comes across as 'aggressive' rather than 'assertive', this doesn't help our kids and can even end up in some really awful situations.

     

    Now, for the burbley bit!! Now that I'm working, and I think the same is true for Mumble in her academic world (tell me if I'm wrong, M ;) ), I want and need support for my AS. But not 'support' that ultimately disempowers me by reducing me to a position where there are no expectations that I can function and compete on a level with the NT world.

     

    In other words, I would rather be given strategies, behaviour I can model and explanations I can understand rather than an attitude that says 'well, everyone else needs to understand AS and make allowances accordingly'.

     

    This won't help me at all, actually. What does help me, both to compete and to 'grow' in ability and confidence, is to have good, effective 'NT' communication skills explained (even if the explanation is ultimately, sorry, it's illogical, but you just have to accept that's how the NT world functions) and most importantly presented so that I can then model them in my own interaction with the people I work with.

     

    I am lucky in that I have a fantastic line manager, and I am getting better at being a team leader because I consciously think all the time 'How would X deal with this', when I'm having to sort out staff problems, etc, and I model my behaviour and how I say things on her (grammar left the building, sorry!).

     

    I know that some people with AS, and people who support them, parents, etc, feel strongly that we spectrum peeps 'shouldn't have to do this', it should be the NT world that changes to accommodate us. To a degree, I think this is true, the attitude to ASD does need to change, but not to one where disabling collusion replaces true support and acceptance. After all, parents struggle with toileting, because for their child to be able to 'conform' to NT expectations as far as this goes, is actually more empowering for them, even if it goes against their innate autistic imperative.

     

    Phew, don't know if any of this makes sense, and as ever, it's only my opinion/experience as an autistic person who feels they are finally getting somewhere in the NT world after 40 odd years of largely failing.

     

    Bid :)

     

    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 :notworthy::D i bow to your wisdom :whistle:

     

     

    hugs x

  8. Posted · Edited by CarolJ · Report reply

    I think the crux here is accepting that the 'supporter' has as much right to have their errors explained too, which the blanket response of 'I am autistic - you are supposed to support' doesn't allow for.

     

    Hope that made sense - pushed for time...

     

    COMING BEN.................................... :lol:

     

    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.

     

    To

     

    As you are aware, one of the areas people with AS have is social interraction. Your recent actions towards me seem to indicate that I have upset you. As someone with AS I am not always aware that I do this. If I have upset you then I offer you my sincere apologies. I was truly not aware of any hurt that I caused. Please can you tell me what I did/said to upset you, as unless I am told, I cannot hope to avoid the same mistake again in the future. At the moment I'm really worried about doing the repeating this action without being aware that I shouldn't do it to others and having others respond in a similar way. Not having too many contacts with people, I can't really afford to be cutting them off.

     

    You are my assigned disability support, and as such I would hope that you are aware of the possibility that I may, as part of my AS, commit social blunders without realising them. I'm not saying this is OK or an excuse because I'm AS (but unless I am made aware of what I do wrong- it being explained in a constructive way without personal feelings - it places me at a distinct disadvantage.

     

    I sincerely hope you will forgive my actions and assume the role of mentor and explain what I've done, to help me understand why it has caused the hurt is has and to help me alliviate my anxiety over doing it again. I want to repair whatever damage I've caused and move on, but currently I'm in a situation where this is being made impossible and I am very anxious. sad.gif

     

    Yours

     

    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 ...

  9. Posted · Edited by CarolJ · Report reply

    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 :thumbs:

     

    I think I know the point that canopus is making.

     

    There would be more adults with AS if the moderators weren't so paranoid about certain things. I know several adults with AS who read this forum almost every day but don't post articles because they think the moderators are politically correct control freaks.

     

    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 :crying:

     

    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

  10. Posted · Report reply

    Hi Cariad,

     

    I thought of my social worker as a "friend" and accepted everything she said because I didnt want to upset someone who was so helpful....... It wasnt until someone pointed out that it was her job and that after she clocked off and went home every evening we were still left to fight another day. I smiled sweetly as she praised how"wonderful" I was and wanted to scream "this isnt good enough, get it sorted!!!"

    It took a push too far and yet another cancellation of my sons service before I finally took action. I made a formal stage 1 complaint (have a look on your councils website) it wasnt about her but simply the lack of services and help. Please dont feel intimidated or disloyal. I wish I had been more forceful at an earlier date. The difference in the the way we are now treated is unbelievable and we wasted almost 3 years pussyfooting around.

    Good luck

     

    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.

  11. Posted · Report reply

    One last thing, and I really hope this doesn't offend, as I don't mean it like that at all. Some peeps here have said she should have a better understanding of AS if she is meant to be supporting you. I don't think it will help to sort things out if you go into this with a similar attitude. However good someone's experience and knowledge of AS may be, they also have a right to draw a line for what is acceptable behaviour...I'm not saying for one minute that you have done anything unacceptable, but do you see what I mean?? Just because someone has AS, doesn't mean that all their behaviour has to be accepted by someone else, as ultimately that is actually disabling for the person with AS as it creates an environment where there are no expectations only collusion. I don't know if I have made sense here, and please don't think I am saying you have done anything awful, I'm not...I'm trying to speak more to the peeps who have commented on her attitude to AS?? :wacko::hypno::ph34r::ph34r:

     

    Good luck >:D<<'>

     

    Bid :)

     

    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!

  12. Posted · Report reply

    Is it usual for people not to say you've upset them? Are you supposed to guess? How? :unsure:

     

    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.

     

    What can you do if you've upset someone to the extent that they won't talk to or communicate with you in any way but you have absolutely no idea what you have done? :unsure:

     

    I've upset someone who's supposed to support me and supposed to understand AS, but instead of guiding me so I can avoid whatever error I've made again in the future she's refusing to respond to any attempts I've made at contact. :(

     

    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.

  13. Posted · Report reply

    I think that most of the people I have inadvertently upset are NT rather than ASD.

     

     

     

    I have wondered if this is the result of some etiquette or culture that some people follow but not others. British culture has etiquette like concealing your emotions and not making a fuss in public, and I'm wondering whether the refusing to discuss matters or the keeping silent approach are extensions of this etiquette.

     

     

     

    I can second this that women are more likely than men to adopt the keeping silent approach.

     

    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 :unsure:

  14. Posted · Edited by CarolJ · Report reply

    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.

     

    Now let?s take a look at this event as it occurs between two conflicting mindsets?the normal mind and the autistic mind.

     

    Take a look at the autistic mind. Here you have a mind that perceives things drastically different from the normal mind. This is where the trouble arises. The normal mind, with its style of thinking, grows accustomed to thinking a specific way. It is tolerant in situations where normal people typically suffer. But it is intolerant in situations where normal people should be behaving properly. Then the normal mind sees the autistic person, and does not know that autistic person has a totally different way of perceiving the world. And the normal person, with his normal mind, might be incapable of thinking outside his normal mind, and to consider the possibility that the thoughts of the autistic mind are valid, and might even deny they exist entirely.

     

    [NOTE: ?Normal? is defined as what is accepted by the majority of people in a situation (social, business, etc.) compared to a single person or a minority. Although this may differ between different cultures, all cultures have behaviors they consider normal.)

     

    Is this due to arrogance? Sometimes, yes. Just as many conservatives arrogantly refuse to consider anything outside the box of conservatism, many normal people refuse to understand, or try to acquire understanding in autism. Indeed, some normal minds, as a part of their way of thinking, deliberately refuse to consider understanding autistic people. To these people, autistic people are wrong and they?re right. To paraphrase a well-known line, stated several times from the movie Matilda:

     

    "I?m smart, you?re dumb. I?m big, you?re small. I?m right, you?re wrong. And there?s nothing you can do about it.?

     

    This sums up the attitude of many normal people toward autistic children.

     

    But normal people are not all arrogant. Some normal people want to understand autistic children, and want to develop a ?theory of mind? toward the autistic perception. But they simply cannot. Their inability is not due to their unwillingness, but because of the way they think. And some people want to know how to think differently. If they succeed, it will be because they can think outside of themselves and their perceptions.?

     

    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!.

  15. Posted · Edited by CarolJ · Report reply

    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 :unsure: 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

  16. Posted · Report reply

    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. >:D<<'> >:D<

     

    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 :D

    :thumbs:

  18. Posted · Report reply

    Bit of a typo there - you left the U and the TER out ;)

     

    I hope he's looking after you, and that you're looking after him and that the both of you are looking after the both of them :D

    Your house chaos? I find that soooo hard to believe! :lol::lol:

     

    L&P (as always)

     

    CC :D

     

     

    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!!

  19. Posted · Report reply

    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 :rolleyes:

     

     

    Guess what BD I have a boyfriend now and hes on the spectrum :o - 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 :o - 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 :o -

     

    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!

  20. Posted · Report reply

    try looking around the early posts in the batcave for 'ASM'... or a bit further in for 'sparkledraws'

     

    sorry, given away your secret ID ;)

     

     

    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 :rolleyes:

  21. Posted · Edited by CarolJ · Report reply

    Hi I dont think we've met.

    Just wanted to say well done, our kids get one shot at an education & you did the right thing.

     

    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!

  22. Posted · Edited by CarolJ · Report reply

    Sorry, guys, I've probably over-analysed everything here! :rolleyes::wacko::shame:

     

    Bid :hypno:

     

    Still sniffing the pritt stick I see bid, :thumbs:

     

    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."

  23. Posted · Report reply

    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 :unsure:

     

    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?

  24. Posted · Report reply

    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.

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