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No, I'm not making it up! This is the headline in today's Daily Mail to accompany a very one sided article, not even written by a parent of a child with autism.

 

http://www.dailymail.co.uk/femail/article-...ecks-life-.html

 

I can honestly say that whilst life has its complications, and my life bears quite a few similarities to the life of the woman featured in that article, in that I too had to give up a good career, and have a child with very challenging behaviour and severe learning difficulties, I have never felt this sentiment for a moment!

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"But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom's had been a life unlived?

 

Unequivocally, yes."

 

 

######! and this kids mother is supposed to be her friend?!

 

yeah it does sound from the way she tells it, that he is particularly challenging and i'm sure in her ignorance she thinks shes just being realistic, but negative comments like that aren't helpful to anyone

 

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No, I'm not making it up! This is the headline in today's Daily Mail to accompany a very one sided article, not even written by a parent of a child with autism.

 

http://www.dailymail.co.uk/femail/article-...ecks-life-.html

 

I can honestly say that whilst life has its complications, and my life bears quite a few similarities to the life of the woman featured in that article, in that I too had to give up a good career, and have a child with very challenging behaviour and severe learning difficulties, I have never felt this sentiment for a moment!

 

I feel absolutely sick reading that and the comments. Normally I ignore anything in the Daily Wail but even if I ignore it, I have to remember that many many people will read it and take it as truth.

 

Yes, of course having a severely autistic child is difficult and I can understand that at times these feelings will come through - I think it's equally unhelpful to portray the all is fine and lovely vision of autism too - I still have my diary we had to write at school when I was ten - one day I just wrote - "I wish my brother didn't exist, he ruins everything". (I got a D for not writing enough... :wallbash:)

 

What it does do, and some of the comments, is highlight that a prenatal test is going to be difficult because if all it can say is "this child is likely to be autistic" it really doesn't tell you much at all as it is such a spectrum. There was quite a bit of comparison with Downs Syndrome in the comments - I don't know enough about this but is it more of a 'singular' condition?

 

What occurred to me though (and I have to remember that this was someone else telling the story so it's their perception and might not be a true account) was how daft these parents came across (sorry if that's the wrong word - don't mean to offend anyone) particularly in the vacation bit where they decided, at probably the time of the year where there is most upheaval (Christmas) to take the child on holiday involving a plethora of new experiences (flying etc) to an unfamiliar location with totally unfamiliar sensory experiences (or as they put it - "wanting to let him feel the sun on his face") :wallbash: I would have trouble with that and I'm a high functioning adult who can generally communicate when something is unsettling.

 

I had to stop reading the comments because they were making me angry :angry: :angry: - did you see this one for instance:

 

Madam, you are very right. Something else, probably never thought of - the poor neighbours suffer as well.. their quality of life is also changed for the worse if they have the misfortune to live above, below or next to a family with such a child. I know, because I had this misfortune -9 years of misery until 'it' (yes, I realise that this expression will shock) moved to another town with its poor family.

SUCH A CHILD???? IT????? So I'm an 'it' now? Have we accidentally time travelled back several hundred years and someone forgot to tell me? Maybe I'll go and see if they're going to do a new film of "Five Children and It" and apply for the lead role. :unsure:

 

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I haven't read the whole article because I would be too mad. Articles like this are the reason I stay away from the Daily Mail, they are a right wing paper that work on the basis of fear. :unsure:

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I feel ill, having read that. Who the hell is that woman to make such sweeping statements when she isn't even the parent of such a child herself???

God, how dare she! If the family she's talking about share her sentiments regarding their autistic son, why don't they place him in care? Better than than being so resented!!

I'm being unfair, in that I have no way of knowing if the parents do feel that way, of course......

 

Thing about prenatal testing, is that there is no way of discerning the likely severity of the baby's condition. I have a friend who has Spina Bifida, and whose Mum was advised to terminate as her daughter was' going to be a vegetable, unable to walk, talk or do anything for itself' (the doctor's actual words, apparently....)

Well, she's virtually unaffected by her Spina Bifida, apart from an op as a newborn to close the teeny hole at the base of her spine.....

 

As for Down's syndrome, again, there are great variations in severity. I have worked with a woman who has Down's who is nonverbal, incontinent, but is a warm and cuddly wee gem. In another class were two more students who had Down's. The young lady loved going clubbing with her friends (I kid you not, she was a regular party animal, with an eye for the lads!!) and the bloke, in his thirrties, had a passion for science, helped out at an old folks' home and is turning into a reliable pillar of his church community too, helping out here, there and everywhere. I have such a soft spot for him, he is a blessing on legs and not one person who knows him would say his life is worthwhile. But the option was there for his Mum and Dad. It would have been such a loss......

 

Autism is the same, I think. Yes, there are those who are severely affected- but are their lives hopeless, worthless?? I don't think so. But....

Would I want to live that way? Honestly, no, but then, all I know is the life I'm living now........I can't say for certain I'd feel that way, had I been born with severe autism....

And that's the crux of it, I think. You cannot quantify these things, can't give definites......

(I hope my words don't cause offence, they're not meant to, I'm just being honest.)

 

 

 

 

 

 

 

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well im lost or words {and that never happens }

 

i am totally disgusted at te whole article really am sooooooo angry cant say wat i was gonna say as tooo rude.........

 

love donnaxxxxxxx

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Well with friend like that Cath and John certainly have no need of enemies, do they?

Quite obviously this is not the perspective of a 'dispassionate observer' - she speaks very passionately about what she perceives to be a problem, with absolutely no insight into parenting an autistic child outside of her own frame of reference, and then claims emotional 'distance' on the basis that she's not talking about herself but her 'friends'.

TBH I don't read any newspaper, but I do know from referneces on TV etc that the mail has a particular reputation for representing the prejudice, intolerance, suspicion, fear, narrow-mindedness, spite and bigotry of 'Middle England', so to read this kind of bile in it's pages isn't particularly shocking - it's 'representative journalism'.

As for concerns about the harm this kind of reportage can do I'm not sure. I think the kind of people that will read this and nod their heads are exactly the target audience, and that kind of bovine refusal to even consider any other point of view than their own is so ingrained that the heavens opening, God looking down and pointing a finger directly at them and saying 'YOU ARE WRONG' would lead to an argument rather than even a moments reflection or consideration.

[Not that I'm claiming to have God on my side, btw - i'm not sure i even believe in her - I'm just using that totem as it's one that seems dear to their hearts when issues of 'wrong' and 'right arise]

I tend to be more concerned about how disabled people are generally portrayed in all sectors of the media, and there, thank god, things do seem to be slowly improving...

 

So i doubt i'll bother posting a reply, 'cos at the end of the day they ain't ******* worth it and you'd only be pissing in the wind.

 

L&P

 

BD

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Have you seen this comment

 

Personally I regard autism as being an extension of dyslexia - both being excuses made by parents and teachers. Put simply, autism is the result of a lack of basic discipline in the home. If all children were taught the rules from the earliest possible age - with a good whack for repeated offences - the result will be the eradication of autism in no time at all. We would also see many more well-behaved children.

There wasn't much autism around fifty years ago - an age when parents understood how children should be raised.

 

What a nerve!

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As for concerns about the harm this kind of reportage can do I'm not sure. I think the kind of people that will read this and nod their heads are exactly the target audience, and that kind of bovine refusal to even consider any other point of view than their own is so ingrained that the heavens opening, God looking down and pointing a finger directly at them and saying 'YOU ARE WRONG' would lead to an argument rather than even a moments reflection or consideration.

 

 

:lol: yeah youre right baddad

if only there was a prenatal test for ignorance! :lol:

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As an observer of the effects of autism on families (and seeing a large number of children) I can say that there are varying degrees of impact, depending on difficulties that the child has, the support networks, the parent(s), and society at large.

 

Whilst the autistic child can often be a great addition to any family, they can also change the family dynamics - but so can any child.

The biggest problems I see are - exhaustion and anxiety (due to a variety of causes). Some parents are saints, the majority find that there are times when it is difficult, and a small number can't cope.

 

Parents relationships often break up - usually the man leaves - this causes yet more problems to the women that are left.

 

But autistic children are often wonderful - vive la difference

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She makes a good point, but it looses effect as she is merely an observer .

She has no understanding of the love the parents feel.

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As an observer of the effects of autism on families (and seeing a large number of children) I can say that there are varying degrees of impact, depending on difficulties that the child has, the support networks, the parent(s), and society at large.

 

Whilst the autistic child can often be a great addition to any family, they can also change the family dynamics - but so can any child.

The biggest problems I see are - exhaustion and anxiety (due to a variety of causes). Some parents are saints, the majority find that there are times when it is difficult, and a small number can't cope.

 

Parents relationships often break up - usually the man leaves - this causes yet more problems to the women that are left.

 

But autistic children are often wonderful - vive la difference

 

Hi Ian.I speak as a parent of a child with AS .I may be wrong and am sure others with more experience of much more challenging children will correct me if they think so.

I have in my experience come across many parents who work extremely hard and are very dedicated.I have yet to come across any saints.Professionals and some members of the public do give parents saint status.However I think it is a bit patronising.It suggests that these people have been specially called by god and somehow have a gifting in order to cope.....and should cope no matter what .In reality they are ordinary people committed to doing the best they can in a difficult situation.

I think the newspaper article is full of naive stereotypical generalisations.I could make a list....rainman,savants......to name but two of the regular culprits that get brought out by those with stereotypical views and a little knowledge.

However such stereotypical views are best in my opinion challenged [if it is worth challenging them] with facts.I do not see much factual evidence of saints.

Any offended saints please feel free to respond. :devil::) I feel more like one of the small number that can't cope today so will not be applying.

Also the idea of a ''great addition to the family'' brings to my mind adverts for a dog or a new car....not a child.Sorry if that is a bit blunt or to any dog lovers that are very committed to their dogs.Karen.

 

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It's the Daily Mail. What do you expect?

 

An article undermining all efforts to say autism isn't necessarily a negative thing.

 

It can be hard work - my mother often admits it was difficult, and she did have to give up her job so I can see how it stopped many other things in their tracks. Whether 'wrecking your life' is the right term I don't know.

Edited by CEJesson

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It can be hard work - my mother often admits it was difficult, and she did have to give up her job so I can see how it stopped many other things in their tracks. Whether 'wrecking your life' is the right term I don't know.

 

Wrecking your life is a very strong term to use. I know parents of kids with ASD who love them and would never want to cure them or turn them into conventional kids but admit that they create additional hassle that wouldn't be the case if their kids were neurotypical. Most parents don't want extra hassle or having to make sacrifices for their kids because of their special needs. They want to be like Mr and Mrs Jones down the road with their neurotypical "conventional" kids that are popular at school and don't cause problems, thereby enabling their parents to eat out 4 times a week and go on holiday twice a year. Of course Mr and Mrs Jones read the Daily Mail and think that parents of kids with ASD have brought the problems on themselves and therefore should take full responsibility for their problems without expecting money and services from the state paid using all the taxes of Mr and Mrs Jones.

 

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My feelings are 50/50 on this one. My closest friend has an Adult son with Severe Autism and Severe Learning Disabilities. He has always had Severe Challenging Behaviour and he Self Injures daily. He is unhappy 99 percent of the time and has tried to kill himself on a number of occasions. The other 1 percent of the time he is indifferent. Despite the best of help and all the love and time in the world, they both have zero quality of life, ( her words). I am pleased for those,whose positives outweigh the negatives, however, Autism, sometimes, has no plus's .

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I would never agree that having an autistic child has 'wrecked' my life - it's merely changed it from what it might have been, and that can happen to anyone for any number of reasons, no matter what their circumstances. It's also broadened my perspective in general and led me to some wonderful friendships :thumbs:

 

As for anyone who suggests that it's all an excuse for bad parenting :wallbash: , perhaps they should spend some time with a family affected by ASD - I'm sure their minds would be broadened as a result (well, maybe !!)

 

Right, I'm stopping there before I explode with rage :angry: :angry: :angry:

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Did they blame the childs autism for falling house prices? I thought that was their usual tack on most things...

 

A few years ago a house for sale in Hampshire had �5,000 shaved off its value for being in close vicinity to a house containing a noisy and disruptive autistic kid. The people selling the house were furious when the buyers demanded less than the asking price because of this and the estate agent's valuer then reduced the asking price by �5,000. The sellers bit the bullet and accepted it because they wanted to move away from the 'noisy terror'.

 

I believe the situation is even worse in the US where the Homeowner's Association can sue neighbours for anything that devalues property close by.

 

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Let me tell you a true story.

 

Once upon a time, a lady found out she was pregnant when she hadn't planned to be. She booked a termination, but her partner persuaded her not to go ahead with it. He then abandoned her while she was in labour, saying he couldn't handle the responsibility. So she raised her child alone, & a few years down the line he was dx'd with autism.

 

Fast forward 20 years, & she is still alone & still looking after her son, who is now a handsome young man who has moved from classical autism to HFA. He's an absolute delight & she loves him beyond words. She has worked incredibly hard to maximise his potential. But he is unlikely to be able to hold down a job, and will always need a package of care. She has provided for his future needs as best she can, but has the constant worry of what will happen to him when she dies. No other family to care about him the way she does.

 

That lady is my best friend. And she told me that, love him as she does, had she known what was ahead, she would not have cancelled the termination. Not just because of the effect on her life, but her worries for her son's future. Whether I agree with that or not, I can only respect such searing honesty and not judge her.

 

Before anyone jumps on me - I thought the article was pretty awful, & some of the comments from readers beyond ignorant. To my way of thinking, its proper support & respite that are needed in these circumstances, not the elimination of the so-called "problem". I too have had my hair torn out by my son. My lowest point came when he was around six years old. I was sitting in the garden next to a high fence, looked up & found my son leaning over the fence with a brick in his hand. He was about to drop it on my head to see what would happen. At that point in my life I needed a regular break, and support in coping with these kinds of scenarios. Neither was forthcoming. Its really, really hard to see beyond the next day or so when life is like that. But children grow & change, & now I have a son who is working full time, driving, saving for his own place and enjoying life to the full. I have never, ever, wished that he wasnt around. I don't know how I'd feel if he was severely autistic, but I suspect, much the same. Because I love him.

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They complain they don't get enough money in benefits, so how did they afford the 2-week holiday in a rented cottage, an 18-hour flight away, which their 4-year-old did not enjoy? I'm surprised the Daily Mail didn't jump on that!

Edited by Tally

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omfg...just :tearful::wallbash:

 

my son has aspergers and not severe autism like the little lad in this article, but i have friends who have severly autistic children....and i know they dont feel like their kids shouldn't have lived. what a truely awful and plain nasty thing to say. it does seem evident that the family featured in this article dont get much (if any) help though, or have a full understanding of ASD

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The article says very little about living with autism, and a lot about the plight of carers generally. Substitute an adult caring for an elderly parent or partner with, for example, alzheimers, and the scenario would be much the same.

 

Anybody at any time in their lives may find themselves, without choosing to be, a carer of someone who is extremely dependent and difficult to manage, with all the stress, isolation and deprivation that goes with it. We might be able to invent ever more sophisticated ways of eliminating imperfections before birth, but as they go through life, even perfect humans will get sick and old and fragile and need someone to look after them.

 

Lack of support wrecks lives. This writer should have turned her fire on the people who are supposed to be helping this family, and aren't. Why has the education system failed them, for example? That is an issue glossed over in the article.

 

K x

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They complain they don't get enough money in benefits, so how did they afford the 2-week holiday in a rented cottage, an 18-hour flight away, which their 4-year-old did not enjoy? I'm surprised the Daily Mail didn't jump on that!

[/quote"

 

Blimy Tally!!!!! Well spotted, I missed that point, too busy fuming over the rest. Enid

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The Daily Mail has yet to even say they'll consider my equally inaccurate and inflammatory article claiming that parents are in a massive-conspiracy against their disabled children, so we can be sure that the editor has already made up his mind. Thank you Mr Dacre.

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Personally I regard autism as being an extension of dyslexia - both being excuses made by parents and teachers. Put simply, autism is the result of a lack of basic discipline in the home. If all children were taught the rules from the earliest possible age - with a good whack for repeated offences - the result will be the eradication of autism in no time at all. We would also see many more well-behaved children.

There wasn't much autism around fifty years ago - an age when parents understood how children should be raised.

 

What a nerve!

The person that wrote that comment obviously failed to realise that Aspergers Syndrome was looked at in detail by Hans Asperger in the 1940s when discipline was very much harsher than now!!!

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What a load of rubbish. I thought there were a couple of good points in the article. The rest of it including the headline were just completely out of line. The comments were even worse! That has really got my day off to a really bad start.

Edited by skye

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It would be interesting to hear the parents side of this - perhaps this was their choice - done out of love for their child

 

 

.....and I wonder if they are speaking to their so called friend who wrote the article ;)

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Who's to say that your perfect NT baby won't fall in with the wrong crowd when they're 16, become addicted to crack, end up living on the streets and turn to robbery and assaulting little old ladies to feed their heroin habit. Wouldn't that 'wreck your life' or would the parents just be relieved that at least they weren't autistic. Maybe your 'normal' kid could take to wearing a hoody and smashing up cars and knifing other rival hoodies and end up in the young offenders unit, but at least they'd be 'norma'l, eh! :wallbash:

 

~ Mel ~

Edited by oxgirl

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Who's to say that your perfect NT baby won't fall in with the wrong crowd when they're 16, become addicted to crack, end up living on the streets and turn to robbery and assaulting little old ladies to feed their heroin habit. Wouldn't that 'wreck your life' or would the parents just be relieved that at least they weren't autistic. Maybe your 'normal' kid could take to wearing a hoody and smashing up cars and knifing other rival hoodies and end up in the young offenders unit, but at least they'd be 'norma'l, eh! :wallbash:

 

~ Mel ~

 

This is a very good point, and often overlooked. You could argue that most of the world's most serious problems are caused by NT people. (Not sure if there is such a thing as NT, actually, but that's another issue.)

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Who's to say that your perfect NT baby won't fall in with the wrong crowd when they're 16, become addicted to crack, end up living on the streets and turn to robbery and assaulting little old ladies to feed their heroin habit. Wouldn't that 'wreck your life' or would the parents just be relieved that at least they weren't autistic. Maybe your 'normal' kid could take to wearing a hoody and smashing up cars and knifing other rival hoodies and end up in the young offenders unit, but at least they'd be 'norma'l, eh! :wallbash:

 

I mentioned this here about genes responsible for criminal behaviour. Should there be a prenatal test for this?

 

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Put simply, autism is the result of a lack of basic discipline in the home. If all children were taught the rules from the earliest possible age - with a good whack for repeated offences - the result will be the eradication of autism in no time at all. We would also see many more well-behaved children.

 

i had more than enough discipline. i was smacked when disobediant, i was forced to eat foods when i refused and i was punished for being rude. now i'm grown up i dont break rules, am polite and obediant, but i still have an ASD.

 

i agree that things can be worsened by parents not effectively dealing with their childs behaviours, but the condition is still behind it all. i haven't read the article, my parents will have as that is the paper they get. guess they didn't want me reading it, that paper went straight in the bin instead of into the pile with the rest of the weeks papers.

 

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I can't help thinking that the tolerance and understanding that we wish others to give us seems to be somewhat absent in some of your responses. I agree that the title was sensationalist and causes a knee-jerk reaction against it before one even begins to read the article.

 

I love my son with a passion and more than life itself. I admire him, and am in awe of him and accept him he is. However, I would be failing to face reality if I did not admit that at times I have been close to the edge. It is so important to remember that our children differ markedly and I cannot possibly judge you if you feel that you can no longer cope, we are all so different, our circumstances are different and I call for tolerance, understanding, compassion and love. I don't wish to judge Cathy and John. I am fortunate, for my life would not be better without my son and my son is extremely contented and confident about himself. But for Cathy, John and the Tom at the moment maybe this is how they feel and surely that is valid. It may change, I hope very much it does but they must be allowed to express what they feel, free of guilt in the knowledge that the autistic community support them. Maybe the journalist would have been advised to make it clear that whilst many of us struggle the vast majority still feel that their child is an enormous asset to their family

 

 

Regarding the genetic screening - I certainly feel that there are genetic advantages to society from autism genes and of course, most of us wouldn't be without our child(ren) given the choice. However, surely it is a matter of personal choice whether someone who already has an autistic child decideds that they would prefer not to have another.

 

I am worried that some desperate parents will read things on this forum and feel even more guilty, wretched and ashamed at the very time that they need nurturing, reassuring, assistance and acceptance.

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But for Cathy, John and the Tom at the moment maybe this is how they feel and surely that is valid. It may change, I hope very much it does but they must be allowed to express what they feel, free of guilt in the knowledge that the autistic community support them.

If you read the article, you will note that it is not written by the parents concerned nor does the journalist actually ask the parents how they feel. It is an outsider's perceptions of a world she does not understand. It would be wonderful if the parents were given the opportunity 'to express what they feel' as many posters have said above but that hasn't happened here and the comments are about the article and the newspaper's portrayal of autism, not the parents.

 

Regarding the genetic screening - I certainly feel that there are genetic advantages to society from autism genes and of course, most of us wouldn't be without our child(ren) given the choice. However, surely it is a matter of personal choice whether someone who already has an autistic child decideds that they would prefer not to have another.

I don't think anyone has said it is not nor is that what the article is about - the article mentions the parents not having more children, not genetic screening which is different - we do not know (as the parents are not involved in this article) if they would have had more children had Tom been NT for instance.

 

I am worried that some desperate parents will read things on this forum and feel even more guilty, wretched and ashamed at the very time that they need nurturing, reassuring, assistance and acceptance.

Well sometimes it helps to be positive - life isn't all bad. Acceptance and tolerance doesn't have to come from pedalling an 'isn't life awful, let's trade stories in who has the most awful life' position and batting about such ways of thinking of autism do have a profound impact on people's perceptions and public stereotypes. What is needed, and what I think this forum does very well, is a balanced view of life with an ASD where people have good and bad days (hmm, that sounds like life...). People come on this forum for advice, to report their child's achievements and also in moments of desperation when it's hard to see those achievements. As an autistic person I have done exactly the same - in fact I have purposely avoided forums where the stance is 'the world's against me, life with an ASD is terrible, life isn't fair' - but if parents/individuals want that, they can go to those forums, but this forum shouldn't be attacked for not being what it didn't set out to be.

 

 

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As said, its the Daily Mail. The stir up trouble tabloid newspaper.

 

It is wrong in the head. Please don't take this too badly. It is a very bad article but a lot of the daily mail catchment are very arrogant towards those who are 'different' in society. Sorry if you DO read the daily mail, I am not putting all readers in this catchment, but this is the general idea.

 

You won't stop them producing drivvle like that.

Edited by CEJesson

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