Tempus
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Posts posted by Tempus
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My mum didn't actually tell me specifically, it was first mentioned when I was 11 and my mum left a newspaper article lying around (or similar, can't remember exactly what it was) that I read and then saw the similarities for myself. I think that's quite a good way to go about it if a child is relatively self-aware; for me it was a relief to have a name put to it and I think figuring it out for myself rather than being 'labelled' by somebody else probably went a good way towards acceptance too.
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I must admit I clicked the link with some trepidation, expecting to find it all really cringey. But I was pleasantly surprised, he has a decent voice by any standards, not just "for an autistic person" and well deserves to go through. Good luck to him and I too hope they look after him now he's in the spotlight,- better than BGT looked after Susan Boyle.K x
This.
I was expecting it to be awful (X-factor has a ridiculous amount of 'sob-stories' that it was likely to be cringeworthy. It was a really good performance. Shame he didn't get through, but good on him for going for it.
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I'm 18 now and have had a limited range of foods that I'll eat all my life. I know my mum despairs about it, and it logically doesn't make that much sense to me -- it's mostly textures that I'm averse to but in the case of some things (such as fish, melted cheese and eggs) it is also the smell. I pretty much live on pasta (I'd say I eat it 90% of days).
He doesnt really eat food which requires using a fork and knife which means he is not skilled. The occupational therapist came up with the suggestion to let him practise by cutting up play-do as it is important to develop these skills.This quote is the main reason I wanted to post; I guess that those sorts of skills are important in a way, but I am still unable to use a knife and fork properly. I can use a knife in the wrong hand ineffectively if there is some very tough meat or similar -- but other than that I just use a fork (in right hand) without a knife. It's never caused me any real problems in the long run; I can cut practically anything with the side of the fork. I know that up to the age of 10 or 11 I quite often just used a spoon instead of a knife and fork for a lot of meals. Just wanted to point out that as these things go it's not that important as a skill to be able to eat properly -- rather to just eat foods that contain at least nutritional value.
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Yup. I know all their supposed reasoning behind it, but for a system that was supposed to be more efficient they've really screwed it up
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I have this problem too. Making phone calls myself is less of an issue -- it freaks me out and I avoid them as much as possible (I get somebody else to do it or use the internet if I possibly can), but if I need to I write myself a list of prompts on my laptop and use those to make sure I don't just freeze up and not say anything. That seems to work for me.
In regards to the phone ringing I quite often just don't answer it. If I do answer it, it always increases my stress levels to ridiculous heights. And I completely agree with the analogy about walking into a room -- if you were wanting someone's attention you wouldn't just shout 'LISTEN LISTEN LISTEN' at them until they answered you. It's just stress before you even answer!
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That video is so utterly ****** up it makes me want to be sick. I thought that the comments here must be exaggerating (though I am a staunch hater of Autism Speaks they seemed a little melodramatic) referring to it as like a horror movie, but it was absolutely disturbing. I'm sure that some people will believe what this short puts across, and the ramifications of that are horrible.
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I've had similar experiences to you. I applied back in March, my declaration letter only arrived yesterday. And even this doesn't include the means-tested grants I applied for; they are just doing the loans for now. It's absolutely ridiculous. The new system really doesn't work!
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"Help! I Seem to be Getting More Autistic!"
http://www.autistics.org/library/more-autistic.html
An excellent article with a wide variety of possible reasons for this.
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I think it's a tricky one because I don't suffer from autism, but I do suffer sometimes (on a very variable scale) as a result of the difficulties and prejudices I encounter as a result of my autism.
I'd agree with this, but I think it's wrong for someone without autism to make that judgement -- even more so for a member of the press to do so, where as a result the term is used in mass media.
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Got to say well done to the makers of this documentary; it was remarkably unbiased and I found I could relate to each of the people in it in some way.
A few things stood out to me especially. Firstly was in Oli's interview with the council worker where he mentioned wanting to do a job relating to the Arts -- and then his Mum piping in with 'repetitive data entry'; if someone said that to me, something that was completely aside from the idea that I had mentioned, I have to say I would be incredibly insulted. Practically, I agree with the mother - but for somebody who is supposedly neurologically typical that shows a remarkable lack of tact and empathy.
Second thing was relating to Tom's fight with his Dad. The documentary came over entirely on the side of his parents, and I can appreciate why that is. I'll say now that I disagree with violence in any form -- but I find myself sympathising far more with Tom than his Dad; even if I had hit somebody, being restrained to the ground (for anybody, never mind somebody who is autistic) would aggravate me ten-fold, and at which stage I would personally become incredibly violent. It seemed to me that when Tom hit his mother earlier on in the documentary he was just trying to push her away -- and she seemed to take it as if he was attacking her -- could anyone explain this? It was fairly plain to me that he wasn't intentionally attacking her, but that isn't how it was put across in the documentary.
The last thing was very positive; I absolutely loved near the end with Alex's 'date'. I've never been on a date (or been out with a girl alone in a social situation, for that matter), and I'm guessing that the majority of people (maybe not the people on these forums) watching the documentary would think it strange that they both said they enjoyed the data even though very little actual communication was done. Particularly loved that as I know that I would feel exactly the same way.
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Fair enough, I couldn't see any when I looked. Apologies
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Edit: Apparently duplicate thread. Sorry.
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I've got to say that poem is pretty much perfect in my opinion; simplistic but it puts its message across very effectively (which is great because poetry is normally incredibly cryptic, at least to me). Very sad too; hits very close to home. I'm glad to hear that you've passed on people's congratulations to your son; very deserving and I hope you'll pass on mine too
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I absolutely applaud you for doing something like this; it's a wonderful idea, though I truly doubt whether I'd be able to do it! I'm going to post a comment on the video too, and good luck with it
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I'm guessing you've had your assessment now, I hope that it turned out well for you -- I know how much of a relief getting mine was
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Damn all of you getting your results so early (though of course congratulations for getting good results
!) I've got just under a month now to wait for my A-levels. It's almost torture. -
I've got 7 left... 3 of them tomorrow. I'll be so glad when I'm at Uni next year (already setup so that I can do them on computer and in a separate room). Last load of written exams ever, and very glad about it!
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Hi Tempus,I am quite new to this whole subject really, so have no experience to draw on, but i read your post and wanted to wish you luck for your assessment. I have been rapidly learning that assessment and diagnosis can be a long hard road, you must have worked hard to get this far. There are some lovely people on this forum who i am sure will offer support to you whatever the outcome. I will be thinking of you on Friday. Good luck.
X
Thanks for the well-wishes dee. The appointment went well (was stressful as hell though), and I now finally after 6 years have an official diagnosis.
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I personally don't think that autism should enter into this matter at all -- however the US has a less-than-adequate reputation for it's prison and justice system and I think that extraditing somebody to the US for a crime such as this is wrong. He should be tried in a UK court, under UK law and if necessary jailed in a UK prison (somewhere where rights are at least considered to exist).
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It's come up so fast now; it's on Friday afternoon. I'm nervous as hell; if this goes wrong and he says for some reason that I'm not autistic then the (very helpful) things that my Uni has suggested such as use of a computer in exams, rooms for lectures/exams/tutorials that don't have flourescent lighting etc. may not actually happen -- they might I suppose, but I'd rather not have to purely rely on their goodwill if I don't get an official diagnosis.
Dunno what to do really; I've written out some notes (well, 3000 words of notes anyway
) for myself to take with me to the assessment so I don't forget anything that I need to say, which have been horrible to write as they've made me think about the negative aspect of it a lot more.I just haven't a clue what I'll do if he doesn't support what my family have thought for years now...
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I respect what you say Tom but autism is a spectrum as you know and you are clearly very able. I am talking about whether it is right to have a blanket view, based on the abilities and expressed views of those least severely affected, which denies the prospect of any relief to those most severely disabled.My DD is unable to communicate basic needs and wants to any but her nearest and dearest. She can't speak, has only a few signs, doesn't use PECs and can't read or write either. She is likely to be completely dependent on someone correctly guessing her needs and wants, and looking after her for the whole of her life. My husband and I were both 32 when she was born, so there will come a time when we are not alive to look after her, and what will her life be then? She can't tolerate unexpected noises - a police car going past the window sends her heart racing and her into a complete panic - nor can she cope with any changes to her routine - us going back to the house to pick up a forgotten object would be sufficient to have to abandon a whole day out as she would be so distraught. If I could "cure" all these things which would improve the quality of her life, and still leave behind the loving little girl who tries really hard to master new skills which most toddlers have got cracked, I'd do it.
Autism is not the sum total of my DD, but for her it is the biggest struggle in her life. That might not be the case for everyone on the spectrum, but equally she is not alone in this. We don't say that curing childhood cancer/disfigurement/physical impairment is eugenics, or creating a "designer baby", and I myself cannot see why relieving some of the crippling effects of autism is in any way different.
I can understand what you're saying, but there is no way to create a cure that would only cure those undesirable aspects or would only cure those with more severe forms of autism. My opinions on the idea of a cure stem only from what I go through myself, however because it is a spectrum of conditions I can't only focus on that one area -- anything that I believe, I have to apply to everything else.
It's a hard choice between the desirable and undesirable aspects at times; there have been times in the past where I've felt that I would quite happily give up certain parts of my personality to cure others -- I have very severe sensory issues (especially with touch, I can't even accept a hug from my mum without a lot of effort).
We don't say that curing childhood cancer/disfigurement/physical impairment is eugenics, or creating a "designer baby", and I myself cannot see why relieving some of the crippling effects of autism is in any way different.I think you're taking what I said wrongly; I am only applying that to the idea of pre-natal testing (something I disagree with for absolutely everything, no matter what the condition). It is eugenics to either abort or 'modify' a foetus in order to remove undesirable aspects. My opinions on a cure are separate to this.
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But aren't the anti-cure, anti-screening advocates making exactly that call too?I don't profess to be able to measure the quality of anyone's life, whether with an ASD or not, nor do I profess to be able to say whether someone should or shouldn't have been born. And speaking for myself I wouldn't terminate a pregnancy for ASD or Downs for that matter.
But, would I refuse a "cure" for autism if it were offered for my daughter? Personally, I think I would not, because the way in which her autism affects my daughter is to cause her extreme anxiety, and severely inhibit her ability to lead a full life. So I wouldn't turn down a cure for that, any more than if she had a serious illness impacting on her quality of life.
And if I were undergoing IVF treatment and had a choice of selecting which embryos to put back, I am afraid that I would screen, and choose to put back the ones who didn't carry the ASD gene or any chromosomal or other detectable disabilities or propensities to serious illness. I am sorry if that upsets anyone, but most parents don't start off their pregnancies with a wish to have a child who will face extra hardship and difficulty in their life. Speaking as someone who is currently pregnant, if my next child is born with ASD, or any other learning difficulty or disability, I will love them just as much as I love my two existing children, one ASD and one NT, and there is no question that they would be terminated or not accepted into our family as an equal family member, but whilst I planned this pregnancy in the full knowledge that another child could be disabled, it wasn't my hope or express intention that he or she would be.
The only point my first post (and this one) was trying to make is that not all ASDs are equal, and that I personally feel that a blanket condemnation of a "cure" for autism or a wish to prevent all screening for ASDs, with the potential knock on effect of stifling further research into what causes the condition, is not helpful.
It's a tough call to make, but in my opinion a cure is entirely wrong. Once somebody has been born with an ASD you are effectively taking away a part of who they are. A lot of my personality is due to my Aspergers, and I wouldn't give it away for the world. I don't believe parents have any right to decide this for their children, as it is such a fundamental part of who they are (a contentious ideal I suppose, but I'm not going to change that any time soon).
As to screening, it is back to this concept of 'designer babies'. It's eugenics, and fundamentally wrong, that people would try to change a child before they are even born just to suit society's norms. If a pre-natal test were ever developed (and I hope to God that it isn't) then it is a slippery-slope from there for it to become a mandatory test -- after all, once it is available what would be the point in having people that society views as 'defective' in some way.
I am all for therapy and treatments (non-medical) to assist with severe disability caused by autism, but I think it is wrong to cure something that has no direct disabling effects. Society as it is currently structured is not something that is geared towards a person with an ASD, and as a result certain factors are raised that cause them to be disabling.
And towards the final part of your post you mention "a blanket condemnation of a "cure" for autism or a wish to prevent all screening for ASDs" -- indeed I would condemn it, as the causes of this ASDs are the same; one cannot be cured without the effect of curing another.
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shelby has lived a happy/fulfilled life, how do you measure it? how do you know she has lived a happy/fulfilled life? because she smiles? because the mum says so? you've often said parents dont always know whats best. so we are assuming again, surely?You can only judge based on what you see and experience if you haven't got the condition/disability yourself. If there is no evidence to the contrary then I think it is better to make the assumption that she has lived a happy/fulfilled life rather than being unhappy with it -- and this is also more logical; she has never experienced life in any other way, so why would what she has make her unhappy?
Services in Leicester for ASD. Are they good?
in General Discussion
Posted · Edited by Kathryn
To remove name of professional in line with forum rules · Report reply
I'm not sure about the current state of services in Leicester, never having used them myself except when getting a diagnosis (which, although a slow process, was very good -- the person I eventually saw was excellent and well-known) . My mum works at the City Council and last I heard was on a planning committee at the moment, or something or other aimed at improving said services for ASDs -- so there is at least scope to see improvement in future, if such a thing exists.
I certainly wouldn't say above average though. If you are considering moving somewhere specifically for better services, I wouldn't advise Leicester.