AmyNelson Report post Posted October 24, 2004 I wondered how people would feel if eventually a cure was discovered. Would you want your child to use it, or might you feel it would change who they are. If you are on the spectrum yourself, would you use one, or be wary of losing a part of yourself. For me personally, I have AS and would not want to use a cure, and my son has HFA/AS and I wouldnt want him to change either. I want to state that this is only referring to autism, not comorbids, such as depression, bowel problems, epilepsy, ADHD etc. Quote Share this post Link to post Share on other sites
Auriel Report post Posted October 24, 2004 (edited) i get a sense of deja vu with this post! Edited October 24, 2004 by Auriel Quote Share this post Link to post Share on other sites
nellie Report post Posted October 24, 2004 Hi Amy, welcome to the forum We have a topic similar to this. Would you give me a pill if it cured my aspergers, something to ponder! http://www.asd-forum.org.uk/forum/index.ph...st=0entry1108 I have two sons, my eldest is 26, he was diagnosed with ASD at 19, he is now in an ASD specific residential care placement. My youngest son, possible AS, has had mental health problems for the past 5 years. My husband, 52, was diagnosed with AS last year. My husbands father and brother are undiagnosed AS. No, I would not want a cure for my family, I don't know about my sons, but my husband would definitately not want a cure for himself. They have wonderful qualities and I'm not sure they would have these qualities if they were not on the autistic spectrum. Thanks for the link to your new site, I have had a quick look and from what I have seen it looks very promising. There didn't seem to be any mention of partners of aspies, I may be mistaken, it was only a quick look. We have some aspie members on here and they can be an enormous help to us. It would be great to have your input. Nellie. Quote Share this post Link to post Share on other sites
oracle Report post Posted October 24, 2004 I don't want to cure my sons because I don't believe that they are ill? I would however like to make their lives easier and take some of their anxieties and phobias from them. So there are parts of their autism that they have difficulty coping with, that I would like to make easier for them. Does that make sense? Carole Quote Share this post Link to post Share on other sites
Tez Report post Posted October 24, 2004 I agree with Carole, I don't want a cure for my son's autism because it's what makes him him, but I do want to make life easier for him. I asked my son whether he would want a cure and he said no. Quote Share this post Link to post Share on other sites
bevalee Report post Posted October 24, 2004 No, i wouldn't want a cure for Ryan's AS. But if they could cure the anxieties and depression, that would really help the whole situation. If the could cure his AS he might not be the same person! Quote Share this post Link to post Share on other sites
Helen Report post Posted October 24, 2004 I wouldn't want a 'cure' for my son as he presents at the moment. His feelings on the matter are the same now as they were in a previous post - in the above link that Nellie has posted. My son hasn't experienced the hardships and difficulties that other AS children have experienced. I'm praying that as he goes through puberty his AS will not have a detrimental effect on him, i.e. on his mental health and well-being. Helen Quote Share this post Link to post Share on other sites
CarolJ Report post Posted October 24, 2004 If you asked me would I change my kids then the answer is no! But if you asked me if I wanted to change the following: 1. Do I want my son to talk - yes I would. 2. Do I want my son to be able to dress him self - yes I would. 3. Do I want my son to be able to feed himsef - Yes I would. 4. Do I want my son to understand the words I say to him - yes I would. 5. Do I want my son to recognise potenital lethal dangers - yes I would. 6. Do Iwant my son to have a chance of an independent life - yes I would. 7. Do I want my son to be able to make decisions about his own life - yes I would. 8. Would I like the chance to ask my son how he feels about his autism - yes I would. 9. Would I like my son to be the way he was before he regressed - yet I would! If I could turn the clock back I certainly would have done things very differently. My son has low functioning autism. Yet I would not change him - but I would take away tomorrow all that stops him from living a full and happy life. And removes the frustration I know he feels with the limitations placed upon him out of necesscity. My daughter as yet is not aware of her autism as we have not yet had confirmed diagnosis. My daughter is higher functioning but she also has learning difficlties and speech & language problems. Again, would I turn the clocks back with my baby girl, the answer is yes indeed. I would love her to be free of her difficulties but I would not change her for the world. I have not voted in this poll because to remove my child's autism is not an option. I would however remove all the problems that result from their autism. In that if it were possible to reverse the damage that was caused to them by MMR then the answer is - Yes I would. I just want my kids to be happy within themselves and not have to rely on me for every little thing they need - I think above all their dignity and independence of spirit and quality of life is important. So I would definitely do everything I could to ensure this. Quote Share this post Link to post Share on other sites
oracle Report post Posted October 24, 2004 I think you have said it all Carol and you certainly brought a tear to my eyes Carole Quote Share this post Link to post Share on other sites
niki Report post Posted October 24, 2004 carol i think you summed it up for all of us well said Quote Share this post Link to post Share on other sites
bid Report post Posted October 24, 2004 Carol, <'> <'> Bid Quote Share this post Link to post Share on other sites
curra Report post Posted October 25, 2004 My son is a high functioning Aspie and I adore him the way he is, but I would like him to be happy, fulfilled, self confident, now and later in his life. If curing autism means that he - would have the same education/work/career opportunities as an NT person, - could be able to make and keep friends and not cry feeling bullied, isolated and misunderstood - could organise himself well enough to show at school the good work he really is capable of - could be more independent to do the usual tasks of daily living and therefore could see himself as a capable boy who doesn't need all the time help from his mother (or others) and would have no feelings of depression, frustration and anxiety related to his disability - could move around the neighbourhood and the school with competence and self confidence without getting lost or being teased by others - could walk on the streets and cross the roads safely, like other children his age - could coordinate his hands and legs, so that he could do sports and have fun with other kids - would not be stressed, too silent, not able to sleep because of school or because he has no friends or has suicidal thoughts - could control bladder and bowels, participate in outings, holiday camps etc - could open up more to the world around him and the world around him could understand better his needs then I would definitely accept a cure for autism. I voted "yes". Curra Quote Share this post Link to post Share on other sites
CarolJ Report post Posted October 25, 2004 Curra <'> <'> <'> ditto what you said. Quote Share this post Link to post Share on other sites
AmyNelson Report post Posted October 25, 2004 I hadnt realised that this question had been asked before, I looked down the list of topics, but maybe it was on a previous page. Thanks for your replies so far. Further to the question, does anyone have an opinion on prevention of autism, as some charity groups and research are aiming to do. This would most probably come in the form of pre-natal testing, in the same way as happens for Down's Syndrome. It is already known that there is often raised testosterone levels in the amniocentesis results of babies that later went on to develop autism. What does everyone think about this kind of pre-natal testing? Would you use it if it was available? Again, I would not choose to use it. Quote Share this post Link to post Share on other sites
Elanor Report post Posted October 25, 2004 On ante-natal testing, for me the issue is really the same as for Downs. I decided that there was no way that I personally could abort a baby after 16 weeks for anything other than a particularly hideous condition. My friend, for example, aborted a baby with hydrocephalus, which wouldn't have survived birth, and I think I'd have done the same. Therefore, I had the blood tests done, but decided that even if the results of the tests indicated a high chance of Downs, I would not have an amniocentesis - this test has too high a risk of miscarriage. There are lots of questions about testing for autism - and they can't be answered until a test is actually discovered. I would want to know how early the test can be done (and the answers provided), and how reliable it is, and whether it can distinguish between degrees of disability. Quote Share this post Link to post Share on other sites
Lucas Report post Posted October 25, 2004 1. Do I want my son to talk - yes I would. 2. Do I want my son to be able to dress him self - yes I would. 3. Do I want my son to be able to feed himsef - Yes I would. 4. Do I want my son to understand the words I say to him - yes I would. 5. Do I want my son to recognise potenital lethal dangers - yes I would. 6. Do Iwant my son to have a chance of an independent life - yes I would. 7. Do I want my son to be able to make decisions about his own life - yes I would. 8. Would I like the chance to ask my son how he feels about his autism - yes I would. 9. Would I like my son to be the way he was before he regressed - yet I would! If I could turn the clock back I certainly would have done things very differently. A lot of Autistics that are able to will fight to the death for those things for all Autistics, but only if they are Autistic, remain Autistic and are valued as Autistics. Quote Share this post Link to post Share on other sites
baddad Report post Posted October 25, 2004 Hi All- Lucas - Often you're bang on in the posts you make, but in this instance I think you may be guilty of the type of stereoptypical thinking that you yourself quite rightly find objectionable when applied to people with ASD's... "only if they remain autistic, and are valued as autistics"... As far as remaining autistic goes, I assume you mean that they should actively present themselves as 'an autistic person', and i think that should be a personal decision without pressure in either direction. While I hope my son (or any autistic person) should never feel the need to 'deny' who or what they are I hope one day to live in a society that doesn't feel the need to make such distinctions. Until that day comes, it's down to the individual how they handle it and that shouldn't attract any sort of value judgement. 'valued' as autistics. Personally, I'd prefer that my son was valued for who he is, whether autistic or non-autistic. The 'label' of autism shouldn't infer any 'value' -positive or negative - without consideration of the person behind that label. Not all autistic people are nice people, in the same way that not all NT people are a*******s! People is people - pure 'n' simple, and a bit more tolerance all round would be hugely welcome. Not having a pop, but did want to clarify that... Sparkledraws - <'> as always. And another 'ditto' for Curra; I too would love to see the negative 'effects' of autism cured, be they internal or social negatives. Who my son is may be influenced by his autism, but that's not all he is. Removing some of the negative effects doesn't neccesarily detract from the individual; it can be an act of empowerment too...[Giving a paraplegic a wheelchair doesn't 'cure' them, but it does remove some of the negative effects. Give them full access and modified working environments as the norm and they cease to be disabled at all...] <'> On testing: The whole question of testing implies value judgements of exactly the type I abhor, and that, in this day and age, shouldn't even be contemplated... To suggest that the quality of someones life can only be measured against the non-disabled, medical model 'ideal' is absolutely sickening. Testing of this type can only perpetuate the negative impact of disability by posing the question in the first place. Happiness comes in all shapes, sizes, colours and hues - it's those who can't accept that that cause all the ###### problems, so perhaps what we really need is in utero 'tolerance level' testing, so we know who to drug into an artificial state of happiness and acceptance! L&P Quote Share this post Link to post Share on other sites
bid Report post Posted October 25, 2004 Well said, Bads! Bid Quote Share this post Link to post Share on other sites
Lucas Report post Posted October 25, 2004 Autism is only a 'label' because it is stigmatised as such, that's what I'm trying to stop. Quote Share this post Link to post Share on other sites
CarolJ Report post Posted October 26, 2004 (edited) Part of the reason while I did not vote in this poll is that Autism does not necessarily cause learning difficulties which both of my children have. If I were to remove their autism would the learning difficulties remain? Lucas is right in that the label of autism does cause a stigma. This depends on a person's perception of autism. I come across of range of reactions to my children's autism. Pity (I am sorry - doh!), ignorance, a stereotypical view gained from a film like Rainman, even disbelief that the condition is "made up" somehow to explain a difficult child not unlike some doctor once said about ADHD or that my children are genius savants! When it comes to my children I want them to have independence and quality of life. They are autistic and I cannot change that but if I could I would remove the limitations that cause them problems every day of their lives. My kids are autistic that does not mean they should be de-valued by society. NT parents of autistic kids do share the frustrations that autists feel. Its very difficult to describe the feelings a parent has when their child is rejected, dismissed, ignored or citicised by others (NT parents and peers) even family and professionals are guilty of this. A mixture of hurt, anger and disgust because its directed towards your child. None of us made the world but we all have to live in it. Society needs to change its attitude towards anyone who is different be it race, culture, sexual orientation or labled with a disability. All we can do is keep pushing for this acceptance. One day when a person says "I am autistic" society will say okay, no worries -and your point is? Martin Luther King once said "I have a dream". Okay, having been up since 3.00am I have rambled a little here. Apologise if I have made no sense but hey, why change the habits of a lifetime! Take care all, whatever we are all in this together. NT parents have autism by proxy! Edited October 26, 2004 by CarolJ Quote Share this post Link to post Share on other sites
big mamma Report post Posted October 26, 2004 Hear Hear ! Quote Share this post Link to post Share on other sites
Lucas Report post Posted October 26, 2004 "I feel so sad, so lonely." "Why is that Lucas?" "Because I am the only Autistic in the village!" "I'm sure there's lots of Autistics in the village." "No, I am the only one; a tragic and persecuted minority!" "What about Mrs Chapman's son? He's got ADHD." "That doesn't count!!!" "What about that man that can count all those cards?" "He's just weird." "And the nursing home has a girl that can't speak." "That doesn't mean she's Autistic!!!" "There's nothing else wrong with her." "She proberley CAN speak, she's just being awkward, just doing this to offend me." "Now why do you think that?" "Because I and only I am the only Autistic in the village!" "Do obsessive-compulsive people count?" "NO!" Quote Share this post Link to post Share on other sites
CarolJ Report post Posted October 26, 2004 Lucas <'> Quote Share this post Link to post Share on other sites
baddad Report post Posted October 26, 2004 lucas - Think how much worse it would be if you were the only GAY AUTISTIC in the Village!!! I think sparkledraws may have missed the reference (lovely woman, but has her head in the clouds half the time!) L&P BD PS: new episode tonight - Yippeeee! Quote Share this post Link to post Share on other sites
AmyNelson Report post Posted October 26, 2004 Hi CarolJ, you said "NT parents of autistic kids do share the frustrations that autists feel." Also "NT parents have autism by proxy!" Its good that you try and understand how your child feels, I wish more parents were like you. There are so many who have very different views and want to dramatically change who their child is and eradicate the autism completely. I feel that it is part of denying who the child is. Baddad said "As far as remaining autistic goes, I assume you mean that they should actively present themselves as 'an autistic person', and i think that should be a personal decision without pressure in either direction. While I hope my son (or any autistic person) should never feel the need to 'deny' who or what they are I hope one day to live in a society that doesn't feel the need to make such distinctions. Until that day comes, it's down to the individual how they handle it and that shouldn't attract any sort of value judgement." I feel that having AS is not a label for me, its like being female, or english, it is who I am. I do want to be recognised for who I am, otherwise its taking away a part of myself. I doubt if there would ever come a time when being female would be not be made a distinction by society, and I feel the same for autism. I dont want it to be ignored, as we are different, and can be happy with our differences. I dont see the point in trying to blend in as if I'm normal and have all labels removed. Its not better or worse, its different. Quote Share this post Link to post Share on other sites
CarolJ Report post Posted October 26, 2004 I think sparkledraws may have missed the reference (lovely woman, but has her head in the clouds half the time!) L&P Oi BD I saw the bit about "sad and lonely" so I gave lucas a hug Yes, I often miss a point, but hey at least I mean well!!!!! <'> Lucas Quote Share this post Link to post Share on other sites
CarolJ Report post Posted October 26, 2004 Hi CarolJ, you said "NT parents of autistic kids do share the frustrations that autists feel." Also "NT parents have autism by proxy!" Its good that you try and understand how your child feels, I wish more parents were like you. There are so many who have very different views and want to dramatically change who their child is and eradicate the autism completely. I feel that it is part of denying who the child is. Amy, if you look at the thread on ABA, my gut feeling is that by being forced to deny one's nature will backfire and possibly lead to greater mental health problems later in life. Although I would do everythign I could to try and help my kids learn to cope with their autism and life, I am not 100 per cent. sure that their problems are due to autism alone. Sorry, if I dont make sense but it makes sense to me (I think). No comments BD Quote Share this post Link to post Share on other sites
curra Report post Posted October 26, 2004 Well said, CarolJ! I am not a very young person and I have seen many times that changing people's attitudes is a very difficult and slow process , sometimes so much that it doesn't take place in a couple of years - if it ever takes place... In the meantime, the real situation is far from ideal. I would not change anything in my son's personality, but I would like to see him grow without so much distress . Quote Share this post Link to post Share on other sites
Helen Report post Posted October 26, 2004 (edited) Hi Lucas and Baddad Ummm, are you both referring to 'Dafydd'? Lucas if you're not referring to Dafydd, then this is for you <'> Helen Edited October 26, 2004 by Helen Quote Share this post Link to post Share on other sites
CarolJ Report post Posted October 26, 2004 (edited) Harumph - BD and Lucas. There's me trying to comfort Lucas - durrh! Thanks Helen - it all makes perfect sense now. Think how much worse it would be if you were the only GAY AUTISTIC in the Village!!!� � I think sparkledraws may have missed the reference (lovely woman, but has her head in the clouds half the time!)� I am officially the VILLAGE IDIOT! Okay no emoction with a dunces hat on! D I would however like to add in my defence - some people dont get time to watch TV - so huh! Edited October 26, 2004 by CarolJ Quote Share this post Link to post Share on other sites
baddad Report post Posted October 26, 2004 AS is not a label for me, its like being female, or english, it is who I am. I do want to be recognised for who I am, otherwise its taking away a part of myself. Hi Amy - I may have put it badly, but that's exactly what I was trying to say! Ben is an individual, and should be accepted for that regardless of whether he is or isn't/does or doesn't have ASD. In the same way that NT people should not expect him to wear the label for their benefit, other people with ASD's shouldn't expect him to wear it as some sort of declaration of solidarity, and certainly shouldn't judge him negatively because he might choose not to wear it in that way... Pressuring someone to 'conform' is WRONG, regardless of whether the pressure arises from the NT majority or the ASD minority... I've no desire whatsoever to 'remove labels', I just want to see them become irrelevent; i don't wish to see my son 'blend in' I want him to be accepted as a natural part of the diverse and interesting mix; Most of all, i don't want to see my son being pressured to conform to someone elses ideal, whoever might be promoting it. Hope that's a little clearer, and for what it's worth i suspect Ben will be the type of adult to tell it like it T. I. is, and apologise to no one (Dat's My Boy!) If it turns out I'm wrong, however, I'll not impose my ideals upon him (which, by the way, are pretty much the same as yours), and I hope everyone else will afford him the same courtesy... L&P BD PS: Sparkledraws - "Village idiot?" You'll be taking the bread out of my mouth next!! Quote Share this post Link to post Share on other sites
mbrown Report post Posted October 30, 2004 At first I was going to say "Yes definitely". Any real cure for a condition should be administered. Then I thought.. why change the person who has the condition? Its challenging (to all), but not life threatening. It is the non-autistic people who need the 'cure', not to judge but to accept us all for what we are. Mike ] Quote Share this post Link to post Share on other sites
nellie Report post Posted October 30, 2004 My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else. I read this in a book I am reading and thought I would share it with you. Quote Share this post Link to post Share on other sites
Jericho Report post Posted October 31, 2004 Lucas! As others have said, I'd like to make life easier for my son but without changing him. Some of his difficulties could be lessened by a little more understanding on the part of NT's rather than by 'curing' autism. I wouldn't be keen on the idea of pre-natal testing either. I remember hearing that there are now more babies with Down's Syndrome being aborted each year than there are being born with Down's Syndrome. I find that very sad and would hate to think that ASD's could go the same way. Quote Share this post Link to post Share on other sites
AmyNelson Report post Posted October 31, 2004 90% of pregnancies that are discovered to be of a down's syndrome baby are aborted. Quote Share this post Link to post Share on other sites
Lucas Report post Posted October 31, 2004 Since the discovery of the pre-natal test for DS, all government funding in the US into research for Down's Syndrome has ceased. So much for Bush being pro-life. Quote Share this post Link to post Share on other sites
CarolJ Report post Posted November 1, 2004 (edited) Aside from DS babies being aborted - babies are also aborted for reasons such as cleft pallettes. Not a fan of pre-screening unborn babies. I declined to have amniocentisis (1 per cent. change of misscarriage) with scottie cos I had missed a nucal scan at 11-12 weeks -which had not been out when I was having Emma -because i had missed this earlier scan, I started worrying!!!!! - but my scottie was fine. It would be a cheaper option as far as research goes Lucas - its sad and scarey. Edited November 1, 2004 by CarolJ Quote Share this post Link to post Share on other sites
lynx Report post Posted November 1, 2004 How can I as a parent asnswer this one??? Yes I'd like some things to be easier for James - but the James we have is the one we know and love and we get so much joy from little things that I think we'd have missed out on a lot without the Aspergers. Screening hmm I have very strong and controversial views about that one!!! I watched a cousin live through years of agony etc before he finally died and my brother has learning difficulties (would be diagnosed autistic these days). And although we had several years of infertility treatment I was always adamant that if a screening showed up an abnormality I would have a termination. Even more controversionally even now I would make the same decision - sorry to those of you I've offended there. Quote Share this post Link to post Share on other sites
CarolJ Report post Posted November 1, 2004 I had a an in-depth scan at 5 months gestation with scottie - cos I had missed the original nucal scan for Downs and things were playing on my mind. Doctor aksed if we wanted to know the sex, I said yes and they told me he was a girl!!! LOL! When he was born I remember looking twice at him saying, she's got b***s! Scott came home in a pink babygro, wrapped in a pink blanket. I suppose this was an example where they can get it wrong so that is why I am not a fan of pre-natal screening. We were in shock for about a week after he was born! Quote Share this post Link to post Share on other sites
smallworld Report post Posted November 2, 2004 lynx, thankyou for being so honest, I find it difficult even to myself. I had an ammnio with my last pregnancy for suspect downs and was of the opinion that i would be unable to cope with a disabled child and my two other children. Ironic really now since youngest diagnosed autistic, and we are coping(just) But 20:20 hindsight is of no use to anyone. I have a friend whose sibling died in her first year from a serious genetic abnormality and she has refused any testing in any of her pregnancies. i think family experiences can really help you make a difficult decision that's right for you. I didn't have any to go on and had to make the decision based on how I really felt at that time. I couldn't bear to be without him and feel guilty thinking about that awful few weeks in our lives waiting for the results. In some ways nothing else has seemed so difficult. i hope this makes sense, i too am wary of offending anyone whatever their opinion on such a personal subject. wac. Quote Share this post Link to post Share on other sites
