The doctor who sparked the MMR vaccination debate

[rainbow queen]

http://www.guardian.co.uk/uk/2008/mar/27/h...lthandwellbeing

 

 

extract from the link........thur 27th march 2008

 

But Wakefield continues to raise concerns about the safety of the vaccine. In a recent interview with the Observer newspaper, he said: "I've done what I've done because my motivation is the suffering of children I've seen and the determination of devoted, articulate, rational parents to find out why part of them has been destroyed, why their child has been ruined.

 

"I can't tell you that we know that the MMR vaccine causes autism. But the Department of Health can tell you with 100% certainty that it doesn't, and they believe that, and that concerns me greatly."

 

His supporters have vowed to help clear his name and more than 7,000 signatures have been collected in an online petition.

 

The GMC inquiry is unlikely to resolve the rows about Wakefield's work. In a statement the regulatory body made clear its investigation would not assess the merits or safety of the MMR jab.

[Mumble]

why their child has been ruined.

Yes, as an autistic adult I am a ruined person. Lovely to know that. Great for the self-esteem. Anyone know what time the next express train is due under the bridge nearest me? I wouldn't want to inflict my destroyed, ruined self on society a moment longer. Flippant maybe, and sorry if that upsets anyone, but it really hurts to be described as 'damaged goods'.

[Lucas]

I recall no one actually ever saying what Dr Wakefield claims they are. He's using this canard to make it seem like he's actually still a credible scientist and his opponents are the emotive and dodgy ones. I see Jackie Fletcher posting on websites from time to time and I certainly don't recognise the articulate and rational parent he likes to talk about.

[cmuir]

Yes, as an autistic adult I am a ruined person. Lovely to know that. Great for the self-esteem. Anyone know what time the next express train is due under the bridge nearest me? I wouldn't want to inflict my destroyed, ruined self on society a moment longer. Flippant maybe, and sorry if that upsets anyone, but it really hurts to be described as 'damaged goods'.

 

 

Mumble I can see why the quote by Wakefield would be offensive to someone with an ASD. Guess only thing I'd add is that whilst I love my AS son dearly, I often wonder what was the cause of his difficulties. 'Normality' is a very difficult thing to define, but when R comes home in tears because no one wants to play with him (because of his obsessions), when he feels so low he wraps shoelaces around his neck saying he hates living and wants to die, when he doesn't get invited to parties/social events, he finds it hard to cope on a family outing, etc it breaks my heart (he's only 6). These are all things/feelings that I wish my son didn't experience and I have to be a bystander and try and help him cope/manage. I suspect that whilst the person's quotes lacks tact, they are is in essence recognising these difficulties and attempting to be sympathetic.

 

One thing that also needs recognised is how truly amazing people with ASDs are. My son frequently brings a tear to my eye when he shows me what a truly intriguing and amazing little person he is.

 

I have a great deal of admiration for Wakefield for making a stand and doing what he's done despite being shunned, etc by specialists in the medical field. No smoke without fire in my book!

 

Caroline.

Edited March 28, 2008 by cmuir

[mossgrove]

I am unconvinced by Andrew Wakefield.

 

He is a very plausible character and he plays the media game very well, but utimately I think he has done more harm that good and a lot of what has been written in the Daily Mail etc. whe he has sweet-talked them into writing a sympathetic article is simply self-serving nonsense.

 

Simon

Edited March 28, 2008 by mossgrove

[warrenpenalver]

Yes, as an autistic adult I am a ruined person. Lovely to know that. Great for the self-esteem. Anyone know what time the next express train is due under the bridge nearest me? I wouldn't want to inflict my destroyed, ruined self on society a moment longer. Flippant maybe, and sorry if that upsets anyone, but it really hurts to be described as 'damaged goods'.

exactly its appalling theyve said that!!!

 

Ive heard that fromthe mental health perspective where quite a few professionals prescribe to the permenantly damaged principle. They fail to realise that even an autistic person can with the right support and care go on to have a good quality of life.

 

what are these idiots going to suggest next?? euthenasia for autistic people to end the suffering???

 

personally i think that man has lots of questions to answer consideing the panic he's caused and the fact children have died because they wernt vaccinated.

 

:robbie: :robbie: :robbie: :robbie:

[bid]

Yes, as an autistic adult I am a ruined person. Lovely to know that. Great for the self-esteem. Anyone know what time the next express train is due under the bridge nearest me? I wouldn't want to inflict my destroyed, ruined self on society a moment longer. Flippant maybe, and sorry if that upsets anyone, but it really hurts to be described as 'damaged goods'.

 

OK, devil's advocate and all that...

 

If your child had been developing completely 'normally' until they had the MMR vaccination, and then they lost these skills in a matter of days/weeks to become profoundly autistic, then I can see how you might feel that your child had been 'ruined', if you believed that this regression was due to the MMR.

 

I think this is what Wakefield meant in his quote...I didn't interpret it as referring to everyone on the autistic spectrum, and certainly not myself...

 

I know I've said it before, but I believe it's a very different world for parents of children who are profoundly autistic, such as some of the young people I work with on a nightly basis, where we all struggle to understand and help their frequent, acute distress.

 

Bid

Edited March 28, 2008 by bid

[Mumble]

Sorry if I've upset anyone.

[bid]

Sorry if I've upset anyone.

 

You haven't upset me, Mumble...and I hope I haven't upset you <'>

 

I just think you were maybe taking personally a quote that was referring to children who have very different problems to spectrum people like you and me??

 

Bid

Edited March 28, 2008 by bid

[cmuir]

Hi

 

Likewise. No offence taken and no offence meant.

 

Caroline.

[Lucas]

I don't play that game where there is some imaginary barrier between Autistics with severe issues and those without. Whilst some are eager to stress Autism is a spectrum and complex disorder, they're all too happy to embrace this simplistic and unsupported hierarchy model where the best must be respected and the worst must be described as 'ruined' or something equally stigmatising. In my teens I thought I was in this 'high functioning' catagory because I'd developed so well and was very capable. But I was largely sheltered by the educational enviroment and after leaving it quickly became clear my difficulties were profound and there was no help. I don't think such disgusting langauge should be used about anyone, not just the the group some are happy to single out.

 

Some people decided to invent this thing called 'regressive autism', once it became pretty clear that high VS low functioning was a load of bull, as yet another way of seperating Autistics that could argue with them from the ones(nearly always children) that couldn't. There is not yet any real evidence that regressive Autism exists and if there were there would surely be large cognitive differences that would show up in testing. But such research has been done and there is no difference between the two groups when seperated. The researchers would not have been able to pick out those supposed regressed subjects if they hadn't already had it indicated by the parents making the claims.

 

And naturally, whenever there is an MMR debate in the media, the opinions of an Autistic are never to be seen, which pretty much tells me the media has sided with irresponsibility because it's unlikely they're going to find an Autistic that will actually say they are vaccine-damaged. They only mention the evidence against Wakefield's scare-mongering to cover their legal asses, but they never talk about that evidence in detail.

[Mumble]

I have a question that's been bugging me for a long time - I hope this is an OK place to ask it.

 

Not long ago (maybe 5 years ish, and still now possibly, not sure ) when there were rising numbers of students going to uni there was a concern about measles in particular spreading quickly among undergrads living, studying and socialising in close proximity because they had been born before the MMR became standard - I think they were vaccinated against mumps and rubella but not measles as children. As a precautionary measure, all freshers had to be given the two doses of the MMR (or provide proof to the uni they'd had it done by their GP).

 

Are there any cases of older children/adolescents/adults having the MMR and developing regressive autism or are all the cases (whatever the truth - I'm not getting into the debate) in children who had the MMR at the 'standard' time?

[ScienceGeek]

I have a question that's been bugging me for a long time - I hope this is an OK place to ask it.

 

Not long ago (maybe 5 years ish, and still now possibly, not sure ) when there were rising numbers of students going to uni there was a concern about measles in particular spreading quickly among undergrads living, studying and socialising in close proximity because they had been born before the MMR became standard - I think they were vaccinated against mumps and rubella but not measles as children. As a precautionary measure, all freshers had to be given the two doses of the MMR (or provide proof to the uni they'd had it done by their GP).

 

Are there any cases of older children/adolescents/adults having the MMR and developing regressive autism or are all the cases (whatever the truth - I'm not getting into the debate) in children who had the MMR at the 'standard' time?

 

Interesting. I got the letter about getting the MMR about 5 years ago, luckily for me they found out that I had already had it when I was 13.

[bid]

I don't play that game where there is some imaginary barrier between Autistics with severe issues and those without.

 

Hi Lucas,

 

I'd be really interested to hear about your experiences of working with/caring for children or adults with profound autism, as you and I are both on the autistic spectrum but appear to have quite different opinions on this.

 

Bid

Edited March 28, 2008 by bid

[Lindyloo]

I for one do not believe that the MMR vaccination had anything to do with my DS's problems. Yes he did have his MMR vacinations done, and it did cross our minds at the time as to whether we should go ahead with them, but we did.

 

We did not become aware of Luke's problems immediately, it was a very gradual process, startin from about the age of 2, and we went through all the other possible options before we even considered the possibility of ADHD or ASD. But once we did start assessing these possibilities, it became more and more obvious that Luke had shown ASD type symptoms from the day he was born.

 

I have my own opinions as to what caused Luke's difficulties, but the MMR vacination certainly is not one of them.

[MichelleW]

I have two boys - the first appeared to develop as usual - speech coming along fine, no bowel problems, no stimming then not long after he had the MMR he lost speech, lost bowel control and began hand flapping.

 

So, when along comes my second son - do I take the chance and let him have the MMR or do I assume that as the majority of the heard goes along with the "government recommendations" and that the actual risk of my second one catching mumps, measles or rubella is negligible in itself, and even if he did get it - a severe reaction to the illness would be even less likely.

 

I had to weigh up the risk factor. I do not consider my first son ruined - but I consider his gut is probably significantly damaged.

 

As it happens, I refused to let them give my second son the MMR, and his speech disorder is significantly disordered, but at least he does not have a bowel condition and does not have to live with the embarrassment and humiliation of having no bowel control. OK, so the MMR may not cause the secondary bowel problems often found in ASD children and it almost certainly doesn't cause autism by itself - but that doesn't mean combined vaccines are 100% safe either.

 

It is only through research and study that certain uncomfortable and sometimes extremely painful aspects of ASD may be eased. And researchers should not feel pressured to "conform" to what the government likes to hear.

 

I know many people use the special diets for their children, and as far as I know some of the reasearchers involved in that area of research also agree with Dr. Wakefields theories.

 

If my vet won't give my rabbit more than one vaccination at a time because they do not consider it safe to give more than one at a time to an animal, then why do doctors think it is OK to give combined vaccines to babies?

 

Maybe some of Dr. Wakefields methods may be flawed, but he acknowledged that further work needed to be done. We must also remember that scientific papers and also quotes are often taken out of context and wrongly reported by the media.

Edited March 28, 2008 by MichelleW

[lorryw]

As the Mum of a profoundly autistic 22 year old Ive been asked numerous times if I felt the MMR was to "blame". I always say "no" but every parent has to make there own decisions as to wether to innoculate or not.

I do find the "autistic spectrum" a very difficult concept. The huge variations make the title

"autistic" meaningless to me.

I work with youngsters who are described as autistic and their difficulties are mainly educational, a million miles away from those experienced by my son. He can suddenly become very distressed and without warning run around screaming and banging his head against a hard surface until he bleeds. It is heartbreaking to watch and know that we have no idea what caused such acute distress because he is non verbal. We have had to fight for him to have access to some kind of daytime provision because he is so unpredictable. We plod along living each day as it comes and currently he visits an "autistic specific" day centre twice a week. We felt this would be the way forward but it has been a slow process and we feel that at any moment they could withdraw the service because he is too "difficult".

[Karen A]

Lorry.

I just read your post and wanted to send some <'> <'> Although we have had some tough times I have gained some perspective having read about how upsetting it must be to see your son in such distress and how difficult it must be always wondering how long the current support will last. <'> <'> Karen.

[elun1]

I think that O was autistic from birth. I had a really strong sense of unease immdiately after giving birth to him and actually asked paeds to look at him while still on post natal ward (twice actually!) They could find nothing wrong and Im sure they thought I was just neurotic. He just seemed 'different' and although that's not scientific or anything I definitely felt it. W (my eldest) had MMR and I had misgivings about O having it but in the end I did let him have it. Looking back it didnt make him autistic. We have video of O stimming and rocking at 16mths before the vacc. However I don't think it helped his cause as his chronic diarrhoea seemed to worsen and he became even more detached but maybe these things would have happened anyway.

Lucas - I don't want to get drawn in really but I just have to say to you that until you have looked after a profoundly autistic child 24:7 and worried about his future then that is one aspect of autism you don't fully understand.

Elun

[lil_me]

Why do they keep this guy in the press?

I've always had the same opinion, if the MMR can cause Autism (which I doubt), I would allow any child of mine to have it and would encourage others to do so, Measles kills. I love my sons Autism or not. If I had them again they would both still have the MMR vaccine without question.

 

I remember a friend's agony about 2 years ago now when her little girl got measles, her poor cousin had died from it many years ago and she was petrified she was going to loose her little girl seeing her so upset, that was it for me, her little girl was just a baby. I had to stop her attacking a woman who'd admitted not having her child vaccinated, she of course had very strong views about it.

 

Hi Lil me - I've edited out the second paragraph of you post as it broke forum rules. BD

Edited March 29, 2008 by baddad

[Lucas]

Bid and Elun, I've already said the hig/low functioning, moderate VS severe model of Autism which is not based on evidence is not one I agree with therefore I do not 'play that game'. But your posts use langauge that frame it in exactly what way so how else am I supposed to respond except to say that you do not know me, you have never met me and can not make judgements about how 'profoundly' Autistic or not I am even going by what I tell you or that I am able to tell you it?

 

I'm sick of listening to ancedote, ancedote, ancedote, emote, emote, emote, shrill cliche, ancedote, emote and how Autism is portrayed is actually based on all that rubbish. In the US and Canada, important decisions about Autistics are based on that RUBBISH.

[zarathustra]

If there's anyone here that has even a speck of faith left in Wakefield, please read journalists Brian Deer 's, careful and thorough investigation of him. Don't forget to read about Dr C Stott who now works at Thoughtful House with Wakefield. And please don't mention Wakefield without mentioning Jack Piper.

[zarathustra]

And (While I'm still on my soapbox), HFA and AS as "mild autism", Well, unemployment 90%, serious mental illness 33%, suicide maybe as high as 10% over a lifetime, alcohol and drug problems who-knows%. forensic history who-knows% and so on... It's not all Einstein and Newton you know.

[pookie170]

Oooh, this is such s volatile subject, and I can completely understand every point of view presented here. I certainly don't consider my son to be ruined...not damaged goods or any such thing, love him dearly and know that he is just as brilliant and marvellous and breathtakingly fabulous as any other child on this planet.

Like many others here, I do not believe my son's AS was caused by vaccinations-like elun, I knew very early on that somthing was different in his behaviour. What I definitely DID notice though, was that after receiving his first innoculation, he developed gastroenteritis and this was at the least a monthly event for years- not pleasant for me, and horrendous for Caghal.

 

However.....

 

I do not believe that giving tiny infants (who have extremely fragile immune systems) innoculations containing several different illnesses is clever science at all. Yes, many of the strains given are weakened, some are live, some are not, but tell me, where in the world is a 2 month old child going to encounter all these viruses simultaneously and have to fight them all off at one time? It is NOT what our immune systems were designed to cope with in any way shape or form. And some of the components of the jabs worry me too. (I'm not talking thimerosal either.) I hasten to add I am no expert on this, but what I do know of virology only reinforces my view.

 

When Elijah came along, I found myself in a right old conundrum. To vaccinate or not to vaccinate, that was the question! I could not afford single jabs (which the dear old gov'mnt promised would be available on introducing the combined jabs)so I came to a compromise. I waited until before he started school to vaccinate, as Measles, Mumps and Rubella are indeed both virulent and dangerous and I did not want to be responsible for future problems if he contracted one of the three. While at this stage, the immune system is by no means mature, it is a good deal more able to cope with an attack than a baby's is. He had experieced many different bacteria and viruses in his 4 years and had developed many immunities- a 2 month old baby does not possess these defences, and at this point any immunity he received from his mother's colostrum (if he was breastfed, that is) has largely disappeared too. So I dont agree with bombarding a largely defenceless child with these things all at once. This is why I doubt vaccination would have as drastic implications for an adult, Mumble. Our immune systems(providing we are relatively healthy) are functioning well and are far more able to cope.

 

As to whether Wakefield is right or not, I can't say. But I do believe that the Gov'mnt puts undue pressure on people to conform,as Michelle said, and I definitely know that they liberally 'gagged' NHS practitioners on this subject. Not encouraging....

 

But it is every parents choice. I can only say that while I do not consider my son 'ruined' (totally bad form, Mr Wakefield!!) I wish that life was easier for him. I wish others would show more understanding, I wish he didn't feel so bad about himself....And when you're a parent and you have to worry about your child's future, it puts a whole new spin on things.

 

Esther

[bid]

Bid and Elun, I've already said the hig/low functioning, moderate VS severe model of Autism which is not based on evidence is not one I agree with therefore I do not 'play that game'. But your posts use langauge that frame it in exactly what way so how else am I supposed to respond except to say that you do not know me, you have never met me and can not make judgements about how 'profoundly' Autistic or not I am even going by what I tell you or that I am able to tell you it?

 

I'm sick of listening to ancedote, ancedote, ancedote, emote, emote, emote, shrill cliche, ancedote, emote and how Autism is portrayed is actually based on all that rubbish. In the US and Canada, important decisions about Autistics are based on that RUBBISH.

 

Lucas, where exactly have I made any comment about how 'profoundly' autistic you may or may not be??

 

I just said I was interested to hear about your experiences of working or caring for children or adults who are profoundly autistic, as I have AS and work in this field.

 

Bid

Edited March 28, 2008 by bid

[bid]

And (While I'm still on my soapbox), HFA and AS as "mild autism", Well, unemployment 90%, serious mental illness 33%, suicide maybe as high as 10% over a lifetime, alcohol and drug problems who-knows%. forensic history who-knows% and so on... It's not all Einstein and Newton you know.

 

Hi Zarathustra,

 

I don't think anyone was making these kinds of comparisons??

 

I for one was only highlighting the very different life experience of parents/carers of profoundly autistic children and adults.

 

I have AS and am a professional working in this field.

 

Bid

Edited March 28, 2008 by bid

[rainbow queen]

first of all i would like to say i did not mean to cause any offence -when i posted the title of this thread-i did do it rather quickly and should of put more thought into what had been written-but also it was not my words and i was just going of the article printed.

 

secondly -my take on the matter is very close to what pookie 170 has just posted ...............with regards to the vaccination of tiny infants.i totally agree with this.

 

 

thirdly -i feel that if you or your family have autism in your family -more should be done by the health proffesionals to investigate this-before going ahead with vaccination/without even asking or going into your family background..........lets face it they go into your background if your about to have an operation.....but nothing is asked when you infant is took into the drs for injections....apart from is the baby feeling well today?-please correct me if this was not the case with you -but it certainly was with me and my son!!!

 

fourthly-i was trying to look it up on the net but couldnt find exact dates

if and when they stopped using thimerosal in vaccinations? anybody know?

 

rq xxx

[elun1]

Lucas

I did not in my post at any stage comment on whether you were profoundly autistic or not. What I said is that you have not looked after a profoundly autistic child so you DO NOT understand this particular viewpoint.

Elun

[Mumble]

Rainbow Queen, I'm really sorry I think it's my fault that this debates got a bit out of hand because I got cross about the ruined thing which I know is a quote not your opinion. It wasn't so much this quote in particular but that general notion and the not seeing a spectrum. I do partially understand some of the arguments here - my older brother is profoundly autistic (as in, before there's another argument, he needs 24 hour care 365 days a year, much of which may be due to additional learning difficulties and not autism per se, but I think they 'feed' off each other) - and I think it's incredibly emotive. I do think Zara has a point (though not related to MMR) about the use of 'mild' which I suppose is similar to my anger at the 'ruined' thing. It sets of emotions that are difficult to contain. I HATE the use of the word mild - believe me, the way I am now, scared to leave my room, medicated to cope with 'normal' stuff, scared about the future and a potential suicide risk - that ain't mild. But in other things - when I'm engrossed in my PhD work and really happy - well its a benefit. I'm rambling cause it's late and I'm not having the best day, but I think it's impossible to know how anyone other than ourselves feel (hey and I struggle even with that, so how's someone to know how I feel). Autism is a spectrum, a spectrum on which individuals move, but each individual, as for NTs, experiences the world in their own way.

[bid]

I'm sorry, but I don't understand...who has mentioned the phrase 'mild autism' in this thread or made any such comparisons, apart from Mumble, Lucas and Zara??

 

Those of us who have talked about 'profound autism' are just highlighting the fact that being a parent or carer in these circumstances is a different life experience compared to those of us who have AS or HFA...we never used the term 'mild autism'?

 

Bid

Edited March 28, 2008 by bid

[rainbow queen]

Rainbow Queen, I'm really sorry I think it's my fault that this debates got a bit out of hand because I got cross about the ruined thing which I know is a quote not your opinion. It wasn't so much this quote in particular but that general notion and the not seeing a spectrum. I do partially understand some of the arguments here - my older brother is profoundly autistic (as in, before there's another argument, he needs 24 hour care 365 days a year, much of which may be due to additional learning difficulties and not autism per se, but I think they 'feed' off each other) - and I think it's incredibly emotive. I do think Zara has a point (though not related to MMR) about the use of 'mild' which I suppose is similar to my anger at the 'ruined' thing. It sets of emotions that are difficult to contain. I HATE the use of the word mild - believe me, the way I am now, scared to leave my room, medicated to cope with 'normal' stuff, scared about the future and a potential suicide risk - that ain't mild. But in other things - when I'm engrossed in my PhD work and really happy - well its a benefit. I'm rambling cause it's late and I'm not having the best day, but I think it's impossible to know how anyone other than ourselves feel (hey and I struggle even with that, so how's someone to know how I feel). Autism is a spectrum, a spectrum on which individuals move, but each individual, as for NTs, experiences the world in their own way.

 

 

hi mumble <'>

 

i dont think the thread has got out of hand -its ok -everyone has a right to express there views..............and ive read every post in detail.........i can understand all sides of the coin.........thanks to every one for replying with your honesty XXX

[Mumble]

I'm sorry, but I don't understand...who has mentioned the phrase 'mild autism' in this thread or made any such comparisons, apart from Mumble, Lucas and Zara??

Ahhh - this is why I shouldn't post when I'm knackered. Take two - I was trying and failing to say that I agree with Zara's point about AS/HFA not being mild autism, that's all. Zara, I think made the point because she was having her little rant, as we're all entitled to, about things (i.e. ruined, as I brought up) that quite frankly ###### us off about general understandings (i.e. not peeps here) of autism. Not related to MMR but a by-product of the way such emotive threads tend to turn.

[bid]

Ahhh - this is why I shouldn't post when I'm knackered. Take two - I was trying and failing to say that I agree with Zara's point about AS/HFA not being mild autism, that's all. Zara, I think made the point because she was having her little rant, as we're all entitled to, about things (i.e. ruined, as I brought up) that quite frankly ###### us off about general understandings (i.e. not peeps here) of autism. Not related to MMR but a by-product of the way such emotive threads tend to turn.

 

Mumble and Zara, I have had two breakdowns in my adult life, and I have cared for my son when he had a severe breakdown at 14 and had to fight for adequate provision for him. Believe me, I know the reality of serious mental health problems...

 

BUT, all of that is still a very different experience from caring for a profoundly autistic child or adult who has no means of communicating the reasons for their acute distress, and it is not the same experience of autism IMO.

 

Bid

Edited March 28, 2008 by bid

[Mumble]

it is not the same experience of autism IMO.

Exactly - so what's the argument? I've never ever said it is. All I'm trying to say is that AS/HFA isn't mild autism. Surely if I was saying it was I would be coming closer to saying they're the same? There's no way my experience of autism is the same as my brothers, but then also there's no way my experience is the same as anyone elses, because all of our perceptions are grounded in our experiences.

 

I really don't understand what the argument is here? RQ posted a link, I disagreed with some of the terminology, Zara raised other terminology in common use that she disagreed with. Others have told there experiences, we can all agree these are all very different. I'm confused as to what I've said that's got you cross

[bid]

I'm confused as to what I've said that's got you cross

 

Why on earth do you think I'm cross??

 

Bid

[bid]

Mumble <'>

 

I'm not 'cross' with you or anyone else on this thread.

 

As far as I've been concerned it's just been an open discussion

 

Bid

 

I'm off to bed now...

Edited March 29, 2008 by bid

[Lucas]

I know parents and carers have a different viewpoint, however I've seen that this viewpoint has been dominant in directing Autism research and advocacy for decades and it has led to a right awful mess and drowned out the Autistic viewpoint almost entirely. Autism organisations worldwide are saturated with it and as far as I've been able to tell it hasn't been good for understanding of Autism nor in progress towards the kind of assistence I and others need.

 

Bid, I've found the way you and Elun approached me on the subject to be manipulative because of the way it frames the topic you want to discuss before the discussion even begins. If I say I have not cared for and am not the parent of a 'profound' Autistic, can this be superficially seen as anything else but some kind of admission? Why ask me such a question otherwise!?!

Edited March 29, 2008 by baddad

[elun1]

Temper temper Lucas!

Believe you me I have far too much else to do than worry about 'manipulating' you! I did not comment on whether or not you were profoundly autistic and this is all I was pointing out to you. Hardly manipulative!

There is absolutely no need to be rude.

Elun

[pookie170]

I know parents and carers have a different viewpoint, however I've seen that this viewpoint has been dominant in directing Autism research and advocacy for decades and it has led to a right awful mess and drowned out the Autistic viewpoint almost entirely. Autism organisations worldwide are saturated with it and as far as I've been able to tell it hasn't been good for understanding of Autism nor in progress towards the kind of assistence I and others need.

 

 

 

Lucas, I see what you mean with this, and I value your opinion beacause you are where my son will be (more or less, I know you're both individuals ) in a very short time. You provide a viewpoint that I find very helpful, and I'm glad that this site is home to those with and without asd's- it makes it a much more balanced place!

 

I've got to say though, that I don't see any manipulation in bid/elun's replies, and I promise I'm not 'joining ranks' or anything. I think the prob is that its very difficult to transfer inflections into posts, or take something in a way the writer did not mean, and I truly think thats happened here. The fact that some here are parents of people on the spectrum, some are on the spectrum themselves and some are both doesn't make anyone more or less entitled to put forward or have an opinion. And honestly, I don't regard ANYONE on the spectrum as being ruined, no matter what 'end' of the spectrum they're 'at', if you know what I mean, nor do I think bid/elun have those views- I honestly think Bid was asking a question kinda off the original topic but out of interest?

 

Esther

[Lucas]

Bid's own comments are pretty obvious.

 

I'd be really interested to hear about your experiences of working with/caring for children or adults with profound autism, as you and I are both on the autistic spectrum but appear to have quite different opinions on this.

 

Bid knows I have not said anything even suggesting I work with/care for other Autistics, Bid knows I consider the mild/severe ergo 'profound' nonsense to be disingenous tripe(as does Elun) and Bid knows I simply can't answer unless I discuss it in the terms Bid has framed it or I repeatedly and earnestly point out what is wrong with the question.