news article

[jools]

http://www.dailymail.co.uk/pages/live/fema...in_page_id=1879

[pearl]

Thanks jools. I liked:

 

Asperger's Syndrome is thought of as a mild form of autism because the person can communicate, is of average or above intelligence and appears able to socialise - but I beg to differ.

 

In our experience, there is nothing mild about our son's autism. In some ways, it is harder to deal with than a more extreme form of autism because Luke looks normal and has a wicked command of the English language.

 

But, and this is a big BUT, his brain does not work in the same way as yours and mine.

 

It processes information differently and he has great difficulty fitting in. Believe me, if he could choose to behave normally, he would.

 

I too have been guilty of describing Aspergers as "mild" autism when trying to explain to people, I must find a better way.

 

I've ordered the book from the library

Edited August 16, 2007 by pearl

[Lucas]

I hated the article. It's yet another hate-story describing Autistics as monsters.

 

Newspapers only ever seem to print stories from parents that say such things, never parents that are accepting or Autistics themselves. I wonder if Luke would still want to be non-Autistic if he hadn't been taught that it was so bad to be Autistic and it makes him a monster. The Daily Mail is terrible for such stories, I've stopped buying it; the fiasco with it repeating the discredited Observer story over and over again was the last straw for me.

[llisa32]

I particularly identified with the comment about his brain taking 'blueprints' re food and other things.

 

Thats one of the biggest issues I have at the moment - food...

 

He'll eat certain stuff at school, but will not eat it anywhere else cos of slight variation in taste, same with roast dinners , in fact anything homemade - everyones tastes slightly different so he will only eat it at the first place he tried it!

 

Only thing we're safe to assume he'll eat is when it's a frozen or tin food by the same manufacturer!

 

I'm going to order the book as well

[badonkadonk]

Lucas I kinda agree

 

While the article isn't as negative as usual, and at least points out that sometimes it can be harder to get people to understand because we are different in invisible ways, on a whole it was full of things that annoyed me.

 

The title for a start, I would argue that the majority of Luke's negative behaviour isn't down to being Aspergers and yet the headline would lead you to believe that. Also since when has being different been so bad? Why are we 'wired wrongly'??? She seems like an intelligent woman and yet so incredibly stupid at the same time! I guess people will believe whatever makes them feel better and for her believing that her son is damaged gives her an escape route on which to blame all which Luke struggles with, his different behaviour and the consequences Luke being Luke has on her life.

 

What really got me was the description of Asperger Syndrome as a 'communication disorder', I could just scream and punch my computer sometimes!!! Yes, yes I get it, I know, I'm not the blueprint for Aspergers so don't be shouting at me telling me that some people do have communication difficulties, I understand that. But AS is not a communication disorder. It can be one of the characteristics sure but what about sensory issues? Thinking differently? Good moral values and standards? Average or above average intelligence? Lifelong interests (that aren't soap operas or DIY because apparently they don't count cos normal people do them and they aren't retarded)...I know a lot of you on here know what I'm trying to say and a lot of you think 'oh shut up' but I just get frustrated. I've got a job interview in a hour and a half and what about if one of the interviewers has read the Daily Mail this morning? For once, because I'm desperate, I ticked the disability box and so I presume I've only been offered an interview because I met the minimum criteria so they had to invite me. If they have read about AS supposedly being a communication disorder what chance do I stand when every bl**dy firm insists on bleating on about good communication skills????

 

My communication skills are just fine thanks, I just don't like talking about the weather and will raise an issue with you if I think it could improve the way I work/benefit the company, even if it means it will be unfortunately highlighting someone else's weaknesses. Why is that such a frightening concept? Honesty? Oooohhh don't say it!

 

Anyway, I'm ranting cos I'm stressed and I have a Word and Excel test when I get there and I don't know what the questions will be so I've got the whole fear of the unknown thing going on. I'm trying to take my own lame advice and stay calm, I'm not hiding under the desk yet so

 

Rant over

 

Emily

xxx

[Bard]

The headline appears to be a Daily Mail special, does she refer to her son as a monster in the article? I can't see it.

A lot of what is said is what many parents face on a daily basis; aggression, sensory issues, running away, living in a heightened state of awareness all the time, destructiveness, lack of road sense, sleeplessness.

Luke is still a child, who needs appropriate support. His father has dealt with the situation by withdrawing, which many partners seem to do, and the mother tried to manage.

' I didn't ask for help in those early days. Instead, I tried to put a good face on things and not let on how very hard it was. I was permanently exhausted. '

Then the incident with his coat, which she tried to handle as if he was NT

'I can still remember the rage I felt at his behaviour - and that was a defining moment for me in realising that we needed help, and that whatever was driving his behaviour needed a name. '

That was the beginning of understanding for her, that his actions were not intentionally malicious and confrontational, but symptomatic of something that was driving him. So she went looking for help.

Then she becomes more emotional, using words like 'wired up wrongly' 'blighted for life' That's how she feels, but it doesn't mean that she's right. She's despairing and distressed, so she speaks from her heart.

 

'Asperger's Syndrome is thought of as a mild form of autism because the person can communicate, is of average or above intelligence and appears able to socialise - but I beg to differ.

In our experience, there is nothing mild about our son's autism. In some ways, it is harder to deal with than a more extreme form of autism because Luke looks normal and has a wicked command of the English language.

But, and this is a big BUT, his brain does not work in the same way as yours and mine.

It processes information differently and he has great difficulty fitting in. '

 

So now she's using 'different' instead of 'wrong'

This is how my son is, he has no learning difficulties, which often makes others less tolerant and accepting than if he did. B doesn't want to be the same as everyone else, he enjoys his differences and feels that when conflict occurs, it's the world that is out of step with him.

I think Mumble has taken exception to AS being described as 'a mild form of autism' ( Correct me if I'm wrong MTM!)

Luke is described as articulate and smart by his mother, and she seems to be more positive about him and the future as time has gone on.

'Luke has not had an easy ride lately. The state secondary school he has been attending has been something of a nightmare ordeal for him - and following a recent bullying incident, after which he retaliated in a highly inappropriate manner, he has been excluded.

The good news, however, is that a specialist school for children with autism has finally opened in Wiltshire (we had been fighting the local education authority for years to try to get Luke a placement in a special school outside the county - to no avail).

He will start there as a boarder in September, and although he's terribly nervous (he hates change of any sort), my beautiful, articulate boy is also looking forward to taking the first steps towards independence. '

 

As a parent, I can see that this article has a lot of good points to make, encouraging and informative to the general population. Luke is still a child, and the story is about a child, not an adult. It's also about identifying needs, meeting them appropriately and facilitating his learning and development.

And his mother never gave up on him, never stopped loving him. She did her best, but like the rest of us, she's only human. Being a parent is the hardest challenge I have ever faced, there is no handbook, no correct way to do it. And if you get it badly wrong, the fallout is huge, and the guilt and blame immense.

It's a pity that the Daily Mail wrote the headline.

[bid]

Mmmmmm!

 

Bard, I too thought that the headline was a Daily Mail 'special', but I thought it was good to highlight that there is nothing 'mild' about AS.

 

But, I do worry about the almost 'hatred' of autism that I felt in some of her article (which is something that I have seen on other parent support forums ), although again maybe the tone of her book changes as she works through her feelings, as I think Bard was suggesting?

 

Personally, my autism affects my communication hugely, although not on a supervicial level...although that is not all that autism is for me as BDK says.

 

One thing that does concern me is how children must feel when/if they read their parents describing their autism in such emotively negative terms. I'm not being unrealistic about the things we as parents can struggle with, but I know from personal experience how devastating it can be to feel 'picked apart' over the things that I struggle with as an autistic person (ooooh, feels funny writing that for the first time )

 

Anyway, good luck BDK with the job interview...let us know how you get on! <'>

 

Bid

Edited August 16, 2007 by bid

[ASue67]

I thought the article was good and may well see if I can get hold of the book. Like Pearl I think I have thought of Aspergers as 'mild' autism but it isn't really and it makes out that it is less of an issue than it really is.

Can also identify with the food things as well.................. M will only eat Heinz Baked Beans, he can tell if they are not. and once he has tasted something somewhere he will only eat it if it is exactly the same as it was there (which I can never manage!)

[Lucas]

The Mail wouldn't have even got away with paraphrasing her as a title unless she did say to the effect of her son being a monster, otherwise they are leaving themselves liable to be sued. Just because it doesn't explicitly having her mentioning it doesn't mean she didn't, but everything the article is made up of will be derivative of reality.

 

Naturally and with so many parental recollections of past events, absolutely no blame can be attributed to the parent for anything; it's the Autistic person doing random and often violent things for random and obscure reasons. I've never actually been able to see in real life where this has been the case but some parents are really fond of describing everything like that.

[Bard]

Naturally and with so many parental recollections of past events, absolutely no blame can be attributed to the parent for anything; it's the Autistic person doing random and often violent things for random and obscure reasons. I've never actually been able to see in real life where this has been the case but some parents are really fond of describing everything like that.

 

Why try and attribute blame at all? To parent or child?

Why not try and find out why the random and violent behaviour is happening, identify triggers with the child or adult concerned and see if they can be removed, altered or otherwise neutralised? Does it have to be someone's fault?

[Mumble]

There's not much to add that hasn't been said already. What I do think is interesting is the split in opinion between parents and autistic people (Bid, I'm putting you in the second category - I know you come in both <'> ) who have replied. Just an observation.

 

I don't know about liability to sueing for non-paraphrasing as Lucus mentions, but it seems sensible - the words have to have come from somewhere and surely must have been agreed by the mother before publication. The headline really puts a negative slant on things before you start reading. It would be interesting to do a little linguistic research, giving the same article to two groups but with a positive headline for the second group and then compare their reactions to the article.

 

What I find concerning is that no delination is made between Luke's ADHD behaviours and his Asperger related behavioural characteristics. Whilst they undoubtedly inter-relate the sense I got from the article was that Luke's aggresive and difficult behaviours were because of autism whereas there is actually a lot more going on (not least issues of his father deserting him because of his behaviours).

 

What really got me was the description of Asperger Syndrome as a 'communication disorder', I could just scream and punch my computer sometimes!!!

 

I know a lot of you on here know what I'm trying to say and a lot of you think 'oh shut up' but I just get frustrated.

 

My communication skills are just fine thanks, I just don't like talking about the weather and will raise an issue with you if I think it could improve the way I work/benefit the company, even if it means it will be unfortunately highlighting someone else's weaknesses. Why is that such a frightening concept? Honesty? Oooohhh don't say it!

I do understand what you are saying. 'Communication' in itself is a very fuzzy term - am I not communicating with you all now? It is terminology like this, supposedly used to make terms such as autism and AS easier for the lay public to understand, that do the most damage. Yes, there is always a benefit in writing clearly and concisely (I haven't quite mastered the concise skill yet ) but a clear message does not need to mean a simplistic message. When people read they tend to extract the simple meaning that something is trying to tell them; if we do this simplification first and then the reader further simplifies, it really is no wonder that the general public has such a poor understanding of autism. We need the mass media to stop giving 'simple' messages which are frankly damaging, to the public. In this, I do think ignorance is actually better than a little bad knowledge. Of course, if the person with the 'bad knowledge' is prepared to learn, that's a different matter, but so often people take the simplistic message and then think themselves an expert. This is where knowledge becomes dangerous.

 

I think Mumble has taken exception to AS being described as 'a mild form of autism' ( Correct me if I'm wrong MTM!)

This, as well as 'communication disorder' is a perfect example of trying to simplify the story. Even though the mother rejects the 'mild' label, the article still included it. If she rejects it it is unncessary for that to begin the point being made. People skim reading or trying to extract the main points will read AS as mild autism. This will confirm what thay have read elsewhere and help the association to become more permanent in their 'knowledge'. Had the Mail instead said something on the lines of 'Asperger Syndrome, or 'able autism' whereby the individual possesses average or above average intelligence, can lead to equally severe, yet a different presentation of, the difficulties classically associated with autism, for the individual is accutely aware of their differences and the reactions to these of those around them' it may have made the reader stop for a while a think "well that's different from what I've read before". Enough 'different' messages may help to reduce the associations currently being made and enable a better understanding (btw - that's just a possibility off the top of my head - but I do think we need to remove the distinction between AS and HFA (in adult life they are essentially the same)as doing so will, I believe, help people to understand).

 

One thing that does concern me is how children must feel when/if they read their parents describing their autism in such emotively negative terms. I'm not being unrealistic about the things we as parents can struggle with, but I know from personal experience how devastating it can be to feel 'picked apart' over the things that I struggle with as an autistic person (ooooh, feels funny writing that for the first time )

Absolutely. I want to, and I try as far as possible, to concieve of my autism in positive terms. It gives many benefits in the field I am studying and want to work in and I want to highlight these above the difficulties that may occur when I am not surrounded by people who understand me. I went through my schooling having my differences highlighted negatively by my teachers; I was punished for the way I thought and this then carried over into the way my peers treated me and then because I was getting poor reports which highlighted behaviour over academia, carried over into the way my parents treated me. My mother's view of autism is as a total handicap - her terminology and the way she views my brother who is severly autistic. She can not even accommodate the fact that I am autistic because I don't fit the entirely negative, broken, damaged image that she holds. I have encountered professionals in the field who see the negatives in me and highlight these as the things I need help with whilst refussing to accept that there is anything good about me. I have a very low self esteem stemming from all sorts of things - the academics I work with allow me to manage this because they appreciate what I have to offer, but put me with people, often people who think they are doing the right thing and 'helping' who see the disability before the person I am, and I fall back into frustration which will become anger if people continue to treat me negatively. As harsh as it may sound, I simply have to distance myself from these people. I'm not into 'autism pride' or other such extremes, but neither am I of the 'autism cure' camp. I am who I am - I'm Mumble who is doing what she does because she enjoys it; it just so happens that I have particular skills to bring to what I am doing because of the ways in which I think. The negatives of autism are related to coping/not-coping mechanisms. One thing I can identify with in the article is the fight or flight state of anxiety - this does describe me; I find it very difficult to relax and it is an exhausting way to live. I am however very aware that when I am with people who understand, who truely understand not who think they understand, I can begin to relax a little; it is then that you will see the real Mumble.

 

Sorry - I've gone on a bit after saying there wasn't much to add.

 

I hope your job interview/computer tests go ok Emily

[spectrummum]

There's not much to add that hasn't been said already. What I do think is interesting is the split in opinion between parents and autistic people (Bid, I'm putting you in the second category - I know you come in both <'> ) who have replied. Just an observation.

 

I don't know about liability to sueing for non-paraphrasing as Lucus mentions, but it seems sensible - the words have to have come from somewhere and surely must have been agreed by the mother before publication. The headline really puts a negative slant on things before you start reading. It would be interesting to do a little linguistic research, giving the same article to two groups but with a positive headline for the second group and then compare their reactions to the article.

 

What I find concerning is that no delination is made between Luke's ADHD behaviours and his Asperger related behavioural characteristics. Whilst they undoubtedly inter-relate the sense I got from the article was that Luke's aggresive and difficult behaviours were because of autism whereas there is actually a lot more going on (not least issues of his father deserting him because of his behaviours).

I do understand what you are saying. 'Communication' in itself is a very fuzzy term - am I not communicating with you all now? It is terminology like this, supposedly used to make terms such as autism and AS easier for the lay public to understand, that do the most damage. Yes, there is always a benefit in writing clearly and concisely (I haven't quite mastered the concise skill yet ) but a clear message does not need to mean a simplistic message. When people read they tend to extract the simple meaning that something is trying to tell them; if we do this simplification first and then the reader further simplifies, it really is no wonder that the general public has such a poor understanding of autism. We need the mass media to stop giving 'simple' messages which are frankly damaging, to the public. In this, I do think ignorance is actually better than a little bad knowledge. Of course, if the person with the 'bad knowledge' is prepared to learn, that's a different matter, but so often people take the simplistic message and then think themselves an expert. This is where knowledge becomes dangerous.

This, as well as 'communication disorder' is a perfect example of trying to simplify the story. Even though the mother rejects the 'mild' label, the article still included it. If she rejects it it is unncessary for that to begin the point being made. People skim reading or trying to extract the main points will read AS as mild autism. This will confirm what thay have read elsewhere and help the association to become more permanent in their 'knowledge'. Had the Mail instead said something on the lines of 'Asperger Syndrome, or 'able autism' whereby the individual possesses average or above average intelligence, can lead to equally severe, yet a different presentation of, the difficulties classically associated with autism, for the individual is accutely aware of their differences and the reactions to these of those around them' it may have made the reader stop for a while a think "well that's different from what I've read before". Enough 'different' messages may help to reduce the associations currently being made and enable a better understanding (btw - that's just a possibility off the top of my head - but I do think we need to remove the distinction between AS and HFA (in adult life they are essentially the same)as doing so will, I believe, help people to understand).

Absolutely. I want to, and I try as far as possible, to concieve of my autism in positive terms. It gives many benefits in the field I am studying and want to work in and I want to highlight these above the difficulties that may occur when I am not surrounded by people who understand me. I went through my schooling having my differences highlighted negatively by my teachers; I was punished for the way I thought and this then carried over into the way my peers treated me and then because I was getting poor reports which highlighted behaviour over academia, carried over into the way my parents treated me. My mother's view of autism is as a total handicap - her terminology and the way she views my brother who is severly autistic. She can not even accommodate the fact that I am autistic because I don't fit the entirely negative, broken, damaged image that she holds. I have encountered professionals in the field who see the negatives in me and highlight these as the things I need help with whilst refussing to accept that there is anything good about me. I have a very low self esteem stemming from all sorts of things - the academics I work with allow me to manage this because they appreciate what I have to offer, but put me with people, often people who think they are doing the right thing and 'helping' who see the disability before the person I am, and I fall back into frustration which will become anger if people continue to treat me negatively. As harsh as it may sound, I simply have to distance myself from these people. I'm not into 'autism pride' or other such extremes, but neither am I of the 'autism cure' camp. I am who I am - I'm Mumble who is doing what she does because she enjoys it; it just so happens that I have particular skills to bring to what I am doing because of the ways in which I think. The negatives of autism are related to coping/not-coping mechanisms. One thing I can identify with in the article is the fight or flight state of anxiety - this does describe me; I find it very difficult to relax and it is an exhausting way to live. I am however very aware that when I am with people who understand, who truely understand not who think they understand, I can begin to relax a little; it is then that you will see the real Mumble.

 

Sorry - I've gone on a bit after saying there wasn't much to add.

 

I hope your job interview/computer tests go ok Emily

i agree with lucas comments

[cmuir]

In so many ways the article almost describes my son to a T. It's very difficult when attempting to make people aware (educate) people about autism - that is, people unaffected by it. People tend to only want to read about extreme or shocking cases and there's danger that that can portray people with an ASD as 'monsters'. You can only hope that people are intelligent enough to work that out. Not everyone is the same. I thought the article made interesting reading.

 

Caroline.

[pearl]

I thought the article was good and may well see if I can get hold of the book. Like Pearl I think I have thought of Aspergers as 'mild' autism but it isn't really and it makes out that it is less of an issue than it really is.

Can also identify with the food things as well.................. M will only eat Heinz Baked Beans, he can tell if they are not. and once he has tasted something somewhere he will only eat it if it is exactly the same as it was there (which I can never manage!)

 

Just to clarify, I have never thought of Aspergers as "mild" autism - but I have used that term to describe it when people have asked me about it who know nothing about autism. I can remember another similar thread from a few weeks ago when I said the same thing, & that I would like an alternative quick simple way of explaining it, but I'm still struggling with this one.

[pearl]

I hated the article. It's yet another hate-story describing Autistics as monsters.

 

Newspapers only ever seem to print stories from parents that say such things, never parents that are accepting or Autistics themselves. I wonder if Luke would still want to be non-Autistic if he hadn't been taught that it was so bad to be Autistic and it makes him a monster. The Daily Mail is terrible for such stories, I've stopped buying it; the fiasco with it repeating the discredited Observer story over and over again was the last straw for me.

 

Lucas, JP received in the post yesterday from his Aspie aunt, a lovely Guardian article about Autscape which was wonderfully positive, & also gave different points of view from Aspies, from members of Aspies for Freedom to the first autistic board member of the NAS.

 

Rare, but it happens. And yes the headline was unforgiveable.

 

I have no idea how to post links *note to self: must learn* but if you find the Guardian website & search for Autscape its the first article.

[ASue67]

Just to clarify, I have never thought of Aspergers as "mild" autism - but I have used that term to describe it when people have asked me about it who know nothing about autism. I can remember another similar thread from a few weeks ago when I said the same thing, & that I would like an alternative quick simple way of explaining it, but I'm still struggling with this one.

 

 

Sorry Pearl, didn't mean to take it out of context like that.............. it was just how I had read it when I was reading through the thread and I related to it that was all.

[pearl]

Its ok hun <'>

[Mumble]

Lucas, JP received in the post yesterday from his Aspie aunt, a lovely Guardian article about Autscape which was wonderfully positive, & also gave different points of view from Aspies, from members of Aspies for Freedom to the first autistic board member of the NAS.

 

Rare, but it happens. And yes the headline was unforgiveable.

 

I have no idea how to post links *note to self: must learn* but if you find the Guardian website & search for Autscape its the first article.

 

Here you are Pearl:

 

Positive Guardian Article - Autscape

[Bard]

Here you are Pearl:

 

Positive Guardian Article - Autscape

 

MTM!

[pearl]

Thanks Mumble

I must get a grip & learn how to do that.

[jb1964]

I think this thread has opened up my eyes a little - from all aspects.

 

After reading the article I totally understood where the mum was coming from - our daughter doesn't have ADHD and was diagnosed ASD at 12 (she's 14 now). The 'blueprints', the lack of sleep, the pain thresholds and limited diet are so similar, and whilst we never had the destructive element - she responds to change, frustration and any form of advice with aggression and anger - either at myself, or self harming.

 

My love for my daughter is unrelenting but there have been many a day where I feel total despair and useless as a parent - the wrong word or the wrong thing happening resulting in a whirlwind of emotions that are extreme and upsetting for everyone especially for our little one (4yrs) being an observer to this behaviour.

 

As parents, we have made so many changes, but no matter how hard we try - it is difficult to have a 'normal' family life - there are many times when I feel if only I hadn't used that word or did this or suggested that - it wouldn't have caused that reaction. It is strange to me to have to not get hurt by words or actions - to have someone constantly telling you they hate you or that you don't love them is heartbreaking when you love someone so much - yet I am slowly learning that I must not dwell on that pain and to let go of the hurt because there is nothing I can do or say to stop it happening again.

 

I remind myself often that no matter how much it hurts me both emotionally and physically - the torment that my daughter goes through is much worse. Only yesterday she managed to explain to me that sometimes when she is so frustrated she wants to hurt herself physically to match the pain she feels in her head....like it is going to explode.

 

The thing is with any article like this - it seems very difficult!!! for journalists to reach a balance between making people aware that living with ASD is not a bed of roses, there is no support, there is no 'cure' etc, without having some misquoted information, or misleading title, or misunderstood difficulties.

 

Take care,

Jb

[Guest Lya of the Nox]

Naturally and with so many parental recollections of past events, absolutely no blame can be attributed to the parent for anything; it's the Autistic person doing random and often violent things for random and obscure reasons. I've never actually been able to see in real life where this has been the case but some parents are really fond of describing everything like that.

 

 

i can look back now and see why the violence happened, at the time i felt it was random, but now i see it was cos i changed things and i can never ever explain what a crappy mum i felt when i realsied how much i upset her, just by doing "normal" things

 

as for the communication thing, well i have always taken the easy way and said she has a " social disablement"

that is probably wrong, but trying to help her make sense of what goes on can be hard for me

i know that noise and crowds and things cause her grief, but we have been for a better word " torturing her" for years with all these thing cos no-one would help us and find th reason for the outbursts

 

at the end of the day the olny way people get article read about asd is by painting the bad bits or the savant bits

x

[TheNeil]

Read it, fumed, added response (not that it's been posted yet - hurrah for censorship).

 

While I'm sure it's hardly been all peaches and cream for this woman as a parent, what about poor Luke having to grow up in an environment where he was misunderstood, no doubt confused and upset and seemed to get nothing in the way of support. It's not as though us Aspies go out of way to be 'bad' - very often we can't help ourselves doing 'bad' things (nine times out of ten we're reacting to something as a way of coping).

 

And what was the woman's response to all of his 'bad' behaviour? Prescription drugs. Gee thanks mom

 

What annoys me is that everybody in the media seems to be all too keen to play the blame game. This woman seems to be blaming Luke for what has happened. Some parents (especially on here) seem to blame themselves (although I can understand the rationale behind this). There is no blame. It might come as a shock to the uninformed but ASDs, like so many things, just 'happen'. There's no grand design or master plan that decides that person A is going to get given an 'awful time'. It happens, it's called life. Stop trying to blame someone and get on with it.

 

TBH Jan Greenman seems to be the stereotypical Daily Mail reader. I wouldn't be surprised if her book ended up blaming the Labour government, the EU and/or migrant workers

Edited August 17, 2007 by TheNeil

[Mumble]

It might come as a shock to the uninformed but ASDs, like so many things, just 'happen'. There's no grand design or master plan that decides that person A is going to get given an 'awful time'. It happens, it's called life. Stop trying to blame someone and get on with it.

I do 'get on with it' Neil and I'm not trying to blame others; but I do want others to understand me because it is often in not understanding, as opposed to being melicious, that difficulties occur that make it harder for me to cope.

 

What annoys me is that everybody seems to be all too keen to play the blame game.

But, there is a difference between blame and knowledge. You are wrong that things 'just happen'. There is evidence to suggest a potential genetic link and ongoing research into hormanal links to ASDs. So no, they don't just happen; if it 'just happened' that would be to suggest no neurobiological cause/difference - the question I think we should be more worried about is what happend if in the future we do find out why these things happen. That is what really scares me.

 

I hope I haven't come across too negatively - that's not my intention. I don't blame anyone for my autism, but I do think it is interesting, for self-understanding as much as anything else, to know why I am as I am. For me knowledge is very important - I have questions about my autism that the experts cannot answer for me because the research simply isn't that far advanced. In answering these questions, we have to look at what is different in the autistic individual and a way into this is to consider why that individual may have developed in a particular neurological way. That's not about blame, it's about cause, and these are very different matters.

 

I suppose what I'm trying to say is, I am trying to get on - but I don't need people telling me to do it, it has to come from within and only when I am ready to cope with who I am.

[TheNeil]

Mumble,

 

My reply wasn't aimed at Aspies, the majority of people who come here or the majority of people who actually understand ASDs. It was aimed at the likes of Jan Greenman who seem to focus on the negatives, use terms like 'monster' (Jeez, being a parent of an AS child she should know better than anyone) and seem intent on painting everyone classed as ASD/ASC as being an uncontrollable, moron with an IQ in single-digits.

 

You are wrong that things 'just happen'.

Taken literally, yes, I'm wrong (there's a reason for everything, even if that reason isn't always obvious or clear). However as there's no recognised 'cause', no 'cure' etc., for the unclean masses it does just 'happen' (even looking at it from a 'user' point of view, how come I'm AS but my brother isn't? It really does seem to 'just happen'). If there was a recognised, preventable action that someone made a conscious decision to perform, then there'd be blame (if someone felt the need to apportion blame at all). In this case, and the majority of ASD/ASC cases, there was/is nothing that anyone could do or have done to prevent her son from being not only AS but also ADHD.

 

The article, as I understood it, seemed to be negative, woe-is-me, and how life had treated this poor, poor woman so dreadfully. The point I was trying to make is that, for whatever reason, what happened had happened so she could either sit there wallowing (for 18 years by the looks of things) or just accept it and get on with living with/making the most of what she had. That she had an AS son was no doubt a massive blow for her (for her that is, she obviously couldn't see past common stereotypes and cliches despite the fact that Luke was still her son) but she doesn't seem to have gotten past blaming him (somehow - how it could be his 'fault' though, I have no idea whatsoever)(and what 'fault'? He is how is he - there's no 'fault') and seems to be carrying this stigma around with her. As presenetd in the article, AS=monster child from hell that will destroy families and push 'normal' people into insanity.

 

Unlike you, me, Emily or the majority of Aspies, Auties and parents of Aspies and Auties that I've met, many people are prepared to just sit there and feel sorry for themselves or spend more time trying to find someone/something to blame rather than actually doing something constructive or making the most of what they do have. There's nothing wrong with someone pitying themselves and withdrawing to a corner now and then (we've all been there and done that) but they have to pick themselves up eventually otherwise they either curl up and die or become bitter and twisted, blaming everyone and everything for all the ills in their life and never taking responsibilities for their own destiny.

 

In your case, like Emily and me, your dx hit you hard and you withdrew, felt as if the whole world was against you etc. Now though, by your own decision, you've come out fighting again - something that the likes of Jan Greenman don't seemed to have managed (from the tone of the article she prefers to sit their feeling sorry for herself and spending time blaming people and events).

[Mumble]

I did take it a bit literally - apologies. I'll try harder next time I suppose it just hit a 'sore spot' for me at the moment - feeling rather 'sensitive' and having one too many 'moments' Compared to my mum, Jan Greenman looks like the most positive person in the world. Living your life being told that 'deficient' people (with language rather stronger than that used) should be locked away (particularly when one that that action is applied to is your brother) and then finding out that you fit the criteria for a 'locking up' goes beyond not being nice, but I don't know what the most appropriate word is. And yes my Mum does read the Daily Mail, so I guess I should prepare myself for being a monster as well as all the other terrible things I apparently am. That should give anyone who's thinking of meeting me on a forum meetup enough time to buy shields and armour to protect you from the vicious horrible out of control beast that I am.

 

In your case, like Emily and me, your dx hit you hard and you withdrew, felt as if the whole world was against you etc. Now though, by your own decision, you've come out fighting again

Well trying to fight at any rate. A case of swinging my arms and kicking my legs and if anyone gets in the way it's their own fault. :fight:I understand what you mean though Shares in Kleenex needed (again).

[Paula]

I also hated the article as it demonises autism.

 

 

Autistic people arent monsters my son isnt a monster and ive never thought of him as one.Yes his behaviour is difficult,at times i could scream but on the whole hes a fantastic young man who despite the beleifes of many people who think autistics have no imagination,no social skills and hate contact my son has these things in bucket loads......

 

My son is proud to be different proud to walk and live outside the "box" and im proud to say my sons an aspie and i love him and you know what ...i wouldnt want him any other way infact i think the world would be a happier place if more folks were aspie.

 

Because of my attitude towards my son hes proud of the "label" aspergers and so he bloomeing should be.

[Cat]

I am more than a bit angry that they have not updated their comments. I added mine yesterday morning. Living with autism may not be easy. Having two sons with autism I know that for sure. However my sons are NOT monsters. I did identify with some of the article but what jumped out and hit me in the face was the fact this lady had had her lifestyle pulled from under her like a rug. There are never any guaruntees that our lives will not change in the blink of an eye and the reasons for this are many. Trying to force a child into a coat they do not wish to wear is in my opinion not acceptable. It shows a clear lack of understanding and a parent trying to force a child to be like every other child. Yes life changes for ever and we don't have to like it but we don't have to demonise our children do we? We can surely tell it like it is without doing that.

 

Cat

Edited August 17, 2007 by Cat

[badonkadonk]

Mumble don't be apologising to Neil for being literal!!

 

He is the most frustrating man alive to have a conversation with sometimes because if you're not careful he will interpret something you've said a totally different way in which you meant it and all of a sudden you realise he's having a whole other conversation with you!!!

 

Kinda like what's just happened above, there's a reason us Aspies aren't supposed to talk to each other y'know

 

You are most certainly fighting back now and getting to a really positive place yourself, I 100% get how utterly frustrating it is to do all this work yourself (working on how you see things/understand things) and finally feel like 'ok, I get it now, I'm ready to move forward,' only to be met with the brick wall of other people's ignorance. It's something we face everyday and we just have to keep chipping away at the understanding/opinions of the people we do come into contact with so that the real information about AS gets out there slowly but surely. I had a job interview a couple of weeks ago and when I mentioned AS the first question I got asked was 'so how long have you had it?' it just makes you want to retreat and curl up and give in! And while that might seem the most appealing option essentially you can only retreat, hide and hate the world for as long as you don't want to make positive process. The woman in the article, as I think Neil was trying to say, is not ready to take positive steps forward (and I'm not sure she ever will be, so ingrained she seems to be in the negatives) and it is these people that you just want to give a good shake and say 'get over it and get on with it!'

 

I'm fairly sure that I might have been my usual tactless self and said this to you a couple of times in the past, but I only said it because, ultimately, change only occurs when we make it happen. I know you get this now and embrace it with gusto and I really admire the way you're sticking it to those who try to bring you down (not meant in the least bit patronising, just in case I'm putting my foot it in as per usual). I wouldn't say it to you now (and neither would Neil cos I'd punch him if he did) unless you were getting overly bogged down in the negatives and it was affecting your happiness. I've said it to Neil plenty a time before we got together (especially when he used to come on here and moan, moan, moan ) and I get it said to me the minute I begin fretting about money/jobs/weight issues. Nobody is perfect and the majority of people go through these cycles of positivity and negativity because that's just life I guess, the danger is when we get stuck in one particular cycle. The negatives who nest in blame and can't move forward, and the positives who gloss over everything and never take stock.

 

The fact that the Daily Mail seem drawn to the negatives is no shock really, just as frustrating as usual.

 

Emily

xxx

 

Cat I added a comment yesterday morning as well and there is no sign of it, again not a shocker just annoying!! I totally agree that the mum's description of Luke was demonising, at times it seemed to be screaming 'just look how disgusting my child is, look how awful he is!!' and as much as that attitude gets me riled more than anything I just feel desperately sad for Luke

[pearl]

Emily <'>

Neil <'>

Mumble <'>

 

I am learning so much from you. OK its friday night & the sherry is kicking in, but I mean it.

[Mumble]

Emily <'>

Neil <'>

Mumble <'>

 

I am learning so much from you. OK its friday night & the sherry is kicking in, but I mean it.

:lol: Sherry at 5:30pm??! I'm coming to stay at Hotel Pearl!!! Oh, no, just remembered, I don't like sherry.

 

I'm over being literal now (well for at least the next 1/2 an hour ) - I suffering from chocolate withdrawal, that's my excuse

[bid]

However as there's no recognised 'cause'

 

But there is very strong evidence, as I understand, for a genetic link. Wish someone could come up with a good link for me here!

 

Certainly in my family there are/were 3 of us with formal dxs...me, my son and my dad. There are also other members of my immediate family with identified 'spectrum difficulties' (sorry, can't think of a better way to put it).

 

My personal view is that there is 'genetic autism', and 'acquired autism' caused by a variety of things (epilepsy, MMR, meningitis, etc). I think both autisms share similar symptomns and difficulties, but I'm not sure they are the 'same' thing.

 

Anyway, that's just my interpretation of the various things I have read.

 

Bid

[Mumble]

But there is very strong evidence, as I understand, for a genetic link. Wish someone could come up with a good link for me here!

 

Szatmari, E., Jones, M., Zwaigenbaum, L., & MacLean, J.

Genetics of Autism: Overview and New Directions

Journal of Autism and Developmental Disorders, Vol. 28, No. 5, 1998

 

ABSTRACT: Genetic epidemiology is the study of inherited factors involved in the etiology of a disease or disorder and uses the methods of both medical genetics and clinical epidemiology. In general, genetic epidemiology tries to answer the following four questions: Is the disorder inherited; What phenotype is inherited; How is it inherited or what is the mode of transmission; and What is the nature of the genetic mutation, if any, that gives rise to the disorder? The hope is that by identifying the gene or genes involved in pathophysiology, a much better understanding of the steps from gene product to phenotype will be possible, leading to improvements in diagnosis, an opportunity for thoughtful family planning, and perhaps, most important, to the development of treatments based on an understanding of the biochemistry of the disorder. We review the current knowledge of the genetic epidemiology of autism and the other pervasive developmental disorders (PDDs) and highlight promising new directions.

There seems to be widespread agreement that the PDDs are caused, at least in part, by genetic factors.

There is also some agreement on the phenotypic boundaries associated with these same genetic factors.

However, many points of uncertainty remain

, and several methodologic issues need to be resolved before further progress in mapping susceptibility genes is possible.

 

Two points:

1. There is a genetic link in some cases of autism
2. The link isn't a simple 'cause and effect' - sometimes genes are activated, sometimes they're not - this is what isn't understood (i.e. why is my brother severly autistic, me AS and my sister NT if we come from the same 'stock' - genetic selection (as in the different probabilities for where we get our Xs (and Ys for males) from) does not fully answer this

Basically, it's very complex (as we all know autism is) - Neil is right in that there is no 'cause' if we interpret cause as X = Y. However, we know more about potential causes, genetics being one of these. We don't know if there is an 'autism gene' (current speculation is that there are probably several autism genes), but even if there was an autism gene(s) this is only activated in certain circumstances (possibly environmental, possibly related to other factors - we don't know).

[bid]

Thanks for the link, Mumble

 

I work with/have known children who had some kind of catastrophic physical cerebral trauma, such as meningitis or severe epilepsy, that caused autism. I have also read about the same happening from severe brain injury caused by an accident.

 

Mumble, what do you think about this form of autism where the cause is some kind of very obvious cerebral trauma? Would you see this as the same as 'genetic' autism where there is no clearly definable sequence of events?

 

Hope this makes some sense, I know what I mean!

 

Bid

Edited August 17, 2007 by bid

[Mumble]

Mumble, what do you think about this form of autism where the cause is some kind of very obvious cerebral trauma? Would you see this as the same as 'genetic' autism where there is no clearly definable sequence of events?

This is a difficult one. The diagnostic criteria for autism state that the differences must have been persistent throughout the lifespan.

 

I have two thoughs on this:

1. severe brain damage may lead to autistic like symptoms - but this is not autism per se as it has a different etiology (sp?).
2. Possible (and this is me thinking out loud, not based on any research) the cerebral trauma could perhaps be the environmental trigger that triggers a genetic susceptibility?

I find this very difficult - I had an accident 5 years ago and suffered a severe head injury - my family were prepared for the fact that I'd probably not survive and if I did I would be severely brain damaged. I know I changed after this, and I do think some of my 'autistic symptoms' became more severe after this (but looking back they were present throughout my lifetime and it could just be that I had several changed in job/where I lived/relationship etc at the same time which could also mean I was just reacting in my 'usual' way to unusual circumstances as well as coping with the sensory overload in hospital (I was there 3 months) so I don't know). I suppose what I'm saying is that it would just put me at ease if I knew why I am as I am and I think it's only natural to question something like cerebral trauma that does stand out so much as a possible cause. It would certainly be easier to attribute ASDs to something we can 'see' rather than genetic factors we can't. For me though, I'm still in the 'genetic' camp.

[bid]

This is a difficult one. The diagnostic criteria for autism state that the differences must have been persistent throughout the lifespan.

 

I have two thoughs on this:

[*]severe brain damage may lead to autistic like symptoms - but this is not autism per se as it has a different etiology (sp?).

 

This is my favoured theory. People with severe brain damage, that can be seen on a scan, etc, may present with autistic behaviour, but this is not the same as autism with a capital A.

 

But, if the diagnostic criteria state that the differences must have been present throughout the lifespan, how does that fit with the dx of regressive autism??

 

Bid

[Mumble]

if the diagnostic criteria state that the differences must have been present throughout the lifespan, how does that fit with the dx of regressive autism??

Pass :lol:

[bid]

 

Bid

[pearl]

:lol: Sherry at 5:30pm??! I'm coming to stay at Hotel Pearl!!! Oh, no, just remembered, I don't like sherry.

 

I'm over being literal now (well for at least the next 1/2 an hour ) - I suffering from chocolate withdrawal, that's my excuse

Once the sun is over the yardarm.....

And I found out last week that means after NOON, not 5 as I previously thought!

[darky]

I have to step in and defend the mother. As a mother who does give her daughter perscription drugs, I dont expect that to be critisised when I have made a decision which I feel is in her best interests. I would like to point out, this mother watched her son run across the road and missed a car by an inch. I can relate to this sort of behaviour with my own child.

 

As a mother, it is the most frightening thing in the world to not feel you can keep your child safe. When you feel your childs life is at risk every single day, you will try anything to help with that, and if medication could save their life, then so be it. What a bad mother I am eh for wanting to keep my child safe?

 

Its very hard for people to understand what that is like. I do feel a little offended by some of the coments about "drugs" I do feel thats rather judgemental considering others are jumping to defend their own way of life.

 

You must not forget, that lad has ADHD in addition to his Aspergers, and every person with Aspergers is different with their own strengths and weakeneses, where it is gift to some, its a curse to others, everyone is different.

 

My opinion of the artical is this is a mother who is trying to educate people. She has had a rough time and so has her son. Im sure her son would not thank anyone for negative coments about his mother.

 

I would please ask, that other people respect others decisions on how they raise their children including the use of medication. Its not an easy decision to make, but for some, it is felt there is no choice. This is perscription medication, not street drugs, its a choice, for some children its a life saver. I suggest the ones who are quick to judge do their own research on the benefits and the future of some children who are not medicated. Its not drug for compliance, contrary to opinion.