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oracle

Not again

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This is tragic,as has already been said its not the fault of the child its the total lack of services.We all need support and this poor lady sounds as if she was alone.Our local services are awful iv been lucky in that i have a good family who have supported us.Unfortunatly i lost my mom suddenly 3 weeks ago and t has always stayed with her if i needed a babysitter or even a break.Im not as alone as this poor lady was i have a husband,sisters and friends but even still i have days/weeks when i feel at sea with the world.My heart breaks for the presure this lady and her son must have been under.

Please god let lessons be learnt from this awful tragady.

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The reason why things like this happen but nothing ever changes is due to the fact that blame is always attributed to the Autistic, not the lack of provision and services. The NAS is scared to use it's resources to promote a certain version of Autism in case they offend anybody: if it's like the US and Canada, portraying a mentally retarded child with no hope for the future unless they become less Autistic- Autistic adults will be offended. If they show Autistic adults living independently as Autistics, there will be parents groups that believe this will jeopodise their chances of getting services(usually with the intention of eliminating Autism in their children).

 

As a consequence of this, information on Autism in the UK is scarce and ends up coming from elsewhere. Few have access to real experts so set out themselves to become experts, they will by chance either come across the Autistic community or the Autism community and adopt the view of either one. This shapes Autism policy which currently says Autism is to be blamed for everything and anything where there is tradgedy and Autism put together.

Well said Lucas

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The report has just been on our local news.She did a great job , highlighted the struggles parents have , how much they need support and how many become depressed at some point.

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Hi Suze,

Do you know if the interview is going to be on any london news programmes?

 

Emma

p.s. I agree with every single parent on this forum.

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The system fails to support many children, parents and adults, that is undeniable.

 

But I would like to thank the creators and all who use this site as they provide some of the emotional support which is so lacking. By giving each other information and tricks of the trade, or even just a simple >:D<<'> we can show each other that we are not entirely alone.

 

This doesn't mnean the system doesn't need to change and improve, but it does show each of us the importance of a site like this when we are feeling down. Lets ensure that we all use the support and tlc available online and help each other to ask for help when needed.

 

my heart goes out to the family

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.... so quickly has this slipped from the headline news ... so sad ...

 

Perhaps it was with a sense of voyeurism I watched and cried, but having lost my husband to suicide (not at all related to T's problems but his own) I felt overwhelmed with this ...

 

My husband in a way robbed me of ever using this as get out clause, for that I don't and do thank him, for I would never and could never leave my boys, but at the same time I reached I point of total despair a year ago, I lost everything I believed in (my mind included) but I am still here and so are my boys ... depression hits for all sorts of reasons, mine was a whole heap of them and T's troubles (which are not his fault by any means) were a catalyst to a breakdown. I know as paula said earlier the thoughts that come with feeling like this, but I am still here, and it IS places like these that keep me going, in the dark and lonely hours when sleep evades me and loneliness creeps in ... I know I can find something that we keep me going.

 

To take your own life is one thing, but take anothers leeps beyond what we can understand, I only feel grief and sadness for all that knew them ... in prayers and thoughts they are, I hope that love, light and happiness had finally come there way ...

 

HHxxx feeling sad tonight!

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

 

For what I have experienced is that there are far too many professionals out there who seem to think that we are tricking them in order to get some help. There is a culture of disbeleive and it is only when people are breaking up that something is done but sometimes it is just too late.

 

To all. >:D<<'> >:D<<'> >:D<<'>

 

Malika.

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For what I have experienced is that there are far too many professionals out there who seem to think that we are tricking them in order to get some help. There is a culture of disbeleive and it is only when people are breaking up that something is done but sometimes it is just too late.

 

 

I agree with you completely.xx

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Hectorshouse sending you loads of hugs and gosh you have really been through it, my thoughts are with everyone who has ever felt like this, I have too and it is so refreshing to find people on this forum who understand this, I just feel so angry that this poor woman and her son were not given the understanding or support they needed, that is obvious.

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I actually felt moved enough to post on the Daily Mail's website yesterday.

 

''This is a tragedy - but one that could have been avoided. For many of us who are parents to autistic children every day is a battle to achieve the simplest things for them, like an education. And it is a battle that we fight alone. Since my son's diagnosis a year ago I have had no help whatsoever from any of the agencies involved, and have also struggled with depression as a consequence. I can only hope that this incident serves to expose the appalling isolation that many parents of autistic children find themselves in, and that something is done. The system failed this family - how many more will it take?''

 

There is a full page article in the Guardian today - so it seems that it is filtering out from being a regional story to a national one. http://www.guardian.co.uk/uk_news/story/0,,1756371,00.html

 

There is also a letter from the CEO of NAS in response to the story:

http://www.guardian.co.uk/letters/story/0,,1756243,00.html

 

But nothing that I have read so far (apart from the letter on the Mail's web site from parents) really addresses the fact that it was the system that let this family down.

Edited by zaman

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I actually felt moved enough to post on the Daily Mail's website yesterday. There is a full page article in the Guardian today - so it seems that it is filtering out from being a regional story to a national one. http://www.guardian.co.uk/uk_news/story/0,,1756371,00.html

 

There is also a letter from the CEO of NAS in response to the story:

http://www.guardian.co.uk/letters/story/0,,1756243,00.html

 

But nothing that I have read so far (apart from the letter on the Mail's web site from parents) really addresses the fact that it was the system that let this family down.

 

 

And also her local community and their children, who mercilessly discriminated against and attacked this boy at every opportunity too. No-one here has a clear conscience. It is difficult to see how up against the wall this mother and her child was from all sectors involved, a damning indictment of our uncaring society, will it make a difference ? we can only hope....

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I added a comment to the Daily Mail yesterday but it's not there so they must just be publisihing a few of those added? That makes you wonder how many people have posted up. Either that or mine was just tooooo long!

 

Oracle

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This was a very sad tale and so many of us are stuck in this situation - although I have to admit my own GP has been wonderful offering not just the anti-d's but counselling as well if I needed it, it's a shame this support wasn't there for this girl.

 

Two of my friends (no kids) committed suicide - one via overdose, the other jumped from the Tyne Bridge, it's a numbing feeling knowing these people believed there was no other way. >:D<<'> >:D<<'>

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Because of the post that I did on their site, The Daily Mail have just emailed me to ask if they can interview me for a follow up piece re the stresses of bringing up an autistic child with no support. They are going to phone me tomorrow. As I rule, I hate the Daily mail, but if they are going to be championing this cause, good luck to them. I just have to remember not to swear.

 

Oracle - did you tick the "view all posts"? as I think what they are doing is just showing some of the posts unless you tick that bit.

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Re: Daily Mail - I've just added a comment too.

 

Good luck Zaman - hope they listen to you.

 

Jb

Edited by jb1964

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apparently it was filmed on CCTV, they both jumped about three minutes apart. poor things.

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I have refused to speak to a journalist once before even though they said their intentions were good and they were on my side. I suppose this is something related to Hyperlexia- I read so much that I know the limitations of text, there is not enough room in a newspaper to get a truly accurate picture which is why I trust broadsheets that waste little space for advertising: they are making an effort to make room for the complicated story.

 

Journalists use the limitations to their own advantage, they must heavily edit the information they are given and no matter how they will edit it they will never convey the kind of understanding that the interviewee has of the subject. When Gareth and Amy Nelson of Aspies For Freedom gave an interview to a New Scientist journalist I was a bit harsh with them on their messageboard afterwards, but my point still stood: the way the article was layed out was so they could have their say- only to then be contradicted by bio-ethicist Arthur Caplain(who abandons all ethics when it comes to Autism). He was allowed to rebuke what they said but they could not do that in return; he was shown their statements prior to publication but they were not shown his. They had no right to reply.

 

For an Autistic speaking to the media, there is no right to reply when they dig up and expert that says something else. Luckily parents don't tend to get the same treatment but I would like to ask Zaman to choose her words carefully; the media have already blamed the Autistic and will be looking to do the same again.

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Good point, Lucas. I have worked in marketing for over 20 years, and so know the ropes. The main thing that I will ask for straightaway is editorial control over my interview once it has been written up. And if they can't give me that, then the right of veto as they have to have your permission to print your words.

 

I just feel that it is important to raise the bar on this - that poor family's desperation should not go unmarked. After the death of Victoria Climbe there was a huge change in the way that social care agencies dealt with children, and child protection issues. Something similar should happen now around the way that families with autistic children are all too often left to struggle, or 'cope', in isolation.

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i also sent in a comment and was contacted for an interview for the article by the health editor. I don't know if I should do it or not. I am ok putting my thoughts down on paper but when it comes to live phone conversation.. I just don't want to be misinterpretted. I think there are so many people on this forum that could do a better job of it. Good luck Zaman. :)

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I feel really sorry for the poor woman and her son. My heart goes out to her family, i think all of us on here can understand her turmoil and what she was going through and how hard it can be to raise an autistic child and everything that goes with it.

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Folks ....... those of you who were contacted for interview.

 

Let me just say that "No news is good news"

 

If it isn't in the news then it isn't happening.

 

If we don't talk we won't be heard.

 

Let the journalists tell your stories because only then will people know we suffer in silence.

 

SHOUT! SHOUT! SHOUT!

 

And.......as Lucas points out reiterate that it's not the fault of the Autistic, it's the fault of the system.

 

I'm a journalist, we're not all bad ..... some of us write down the words you want to say but can't.

 

So....GO GO GO!

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There's an excellent article in today's Daily Mail by Charlotte Moore (author of George and Sam) about the stresses of bringing up an autistic child (in her case, two). It says everything we'd want to say - apart from the educational problems - (I don't think her children go to school).

 

I tried to find it on the website but it doesn't seem to be there :huh: - if anyone does track it down please post the link here.

 

K

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I read Charlotte Moore's article and have some issues with it: she seems to think that describing the severe problems caused by her sons will make it more likely that services are given. It won't of course, it will just further spread fear of Autistic people. The article listed stresses and problems but not in the context that would mean "this is a normal reaction to absence of adequete support", leaving people to make up their own minds which will usually mean "blame Autism".

 

And what is it with the media and their chronic inability to spell Autism with a capital A?

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The mother's depression is such a big part of this sad story. I keep finding myself wondering whether the the ADs she was on played a part in her actions.

 

I never capitalise autism, Lucas.

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I read Charlotte Moore's article and have some issues with it: she seems to think that describing the severe problems caused by her sons will make it more likely that services are given. It won't of course, it will just further spread fear of Autistic people. The article listed stresses and problems but not in the context that would mean "this is a normal reaction to absence of adequete support", leaving people to make up their own minds which will usually mean "blame Autism".

 

And what is it with the media and their chronic inability to spell Autism with a capital A?

 

We were discussing this today. My husband works in the day services for adults with learning difficulties and some of these people are autistic, we also have a son with AS.

 

Our concern is that as they shut the day services many of these adults will be left with inappropriate support and care which will in turn lead to depression, meltdowns and behavioural problems. These adults will then be called a danger, when they were perfectly happy and no danger at all while being given the right support.

 

P.S. my son agrees with you about a capital A for Autism!!

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Autism is important, therefore the correct grammar is to spell it with a capital. It's not a descriptive term any more.

 

Ideally when I write it I capitalise it with the Anarchy symbol too :)

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The most important thing about my son is that he is a person, Lucas. If I use 'Autistic person' the emphasis moves away from the person. I think I come under 'anarchic libertarian' so approve of the symbolic use.

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Lucas

 

I don't think Charlotte Moore wrote the article with anything in mind other than to describe the daily reality of her life, and I think rather than inducing fear of autistic people, it will do a lot to dispel prejudice. She talks about the importance of parents having a support network but this isn't the main thrust of the article.

 

On your other very interesting point, Having thought about "Autism" vs "autism" (which I never did before, I must confess :huh: ), I prefer the lower case. Firstly, because grammatically it's more appropriate as we don't normally capitalise such nouns in English.

 

Secondly because Autism makes it seem like some sort of rare disease: autism suggests that it's an integral part of someone's personality. That's just my very personal impression. :)

 

K

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Guest hallyscomet
There's an excellent article in today's Daily Mail by Charlotte Moore (author of George and Sam) about the stresses of bringing up an autistic child (in her case, two). It says everything we'd want to say - apart from the educational problems - (I don't think her children go to school).

 

I tried to find it on the website but it doesn't seem to be there :huh: - if anyone does track it down please post the link here.

 

K

 

Any luck finding this link??? anyone.

 

H.

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Hi to all, >:D<<'>

 

Kathryn I agree with you

 

I don't think Charlotte Moore wrote the article with anything in mind other than to describe the daily reality of her life, and I think rather than inducing fear of autistic people, it will do a lot to dispel prejudice. She talks about the importance of parents having a support network but this isn't the main thrust of the article.

 

Just posted a comment I couldn't do it yesterday as I felt so sad ...

Autism or not I love my son to bit and the only thing I wish is for him to feel happy and able to cope for this some understanding from the big wild world is needed.

 

Take care all. :rolleyes:

 

Malika.

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I do not see how 'Autistic person' moves away from the person: they are the same thing. Autism is an important part of the Autistic person- they would not be the same person without it but an entirely different person occupying that body. A greater part of the Deaf community spell Deaf with a capital D. This is not an exercise in establishing a specialist interest group because the idea behind it would be just as valid if there was only one Deaf person in the entire universe- they're not denigrating themselves or reducing themselves to a label.

 

I call myself British with a capital, Secular, Agnostic, Jedi(demanded Mom stick that down as my religion on the census because it was funny) all with capitals. I do not see why Autism should be singled out as the one that should not be given equal importance. I'm 100% all of these things, "All Things and One"(as soon as I get a Latin translation I'm going to make that the family motto seeing as we don't have one). To call myself a British person does not take away the person, nor is it the case with Secular Agnostic person, I don't see how the logic applies in Autism.

 

I always say that Autistics can't see the invisible lines and that Neurotypicals can't see that they're invisible: we're both mutually disabled. I don't see the invisible line between British person and Autistic person.

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The journalist from the Daily Mail didn't phone me in the end - did anyone else speak to her? And I would really like to read the Charlotte Moore article if anyone can work out how to post a link.

 

I've been reading the posts that other people have made on the Daily Mail site, and they are mostly really, really sad.

 

http://www.dailymail.co.uk/pages/live/arti...e#StartComments

Edited by zaman

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I don't think the Charlotte Moore article has been put on the Daily Mail website as I still can't find it. I've kept the newspaper though, if anyone wants a copy.

 

Here is another article written by the mother of an autistic son in response to the whole situation- in today's Times. (This one found me - the paper was on the seat next to me in the train :huh: ).

 

http://women.timesonline.co.uk/article/0,,...2141717,00.html

 

(PS - anyone who wants to continue the discussion on "Autism" vs "autism", a separate thread has been started!)

 

K

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Having listened to and read of many people saying they'd, "'never do anything like that," I'd just like to add that none of us know what we'd be capable of when ill and suffering from depression at it's worst or come to that, maybe even not it's worst.

Edited by bridie

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I read the article from Charlotte Moore and it was excellent. She said what we have all been saying so well and she put it across brilliantly if i have time tonight i will type it out on here as i still have the paper aswell :D:D

jayne xx

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Unfortunately I do have to raise a morbid issue here.

 

An Autistic that kills their carer will never see the light of day again.

 

If the mother in this case is ever found alive, she will not ever be charged with her sons murder.

 

I would not get carried away with talk of how we can understand the mother's struggle because in the end it is just rationalising what she did, which would not be forgivable if her son was not disabled.

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Unfortunately I do have to raise a morbid issue here.

 

An Autistic that kills their carer will never see the light of day again.

 

If the mother in this case is ever found alive, she will not ever be charged with her sons murder.

 

I would not get carried away with talk of how we can understand the mother's struggle because in the end it is just rationalising what she did, which would not be forgivable if her son was not disabled.

 

 

I think the issue was she was struggling and without help, of course, while it was suicide for the mother it was of course murder/accessory to the fact of the child as you stated, and we shouldn't make that aspect any justification at all. She should have had help, it wasn't there, now TWO people are dead.

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