The doctor who sparked the MMR vaccination debate

[Lucas]

A recent study(as usual, over-simplified and misreported in the Daily Mail) finds that men cannot pick up on flirting signals from women and often misinterprete them. They either never realise a lady fancies them or they ALWAYS think every lady fancies them. The study elaborates on social signals in general and how men fail to detect them.

 

This sounds though like something that has been generally known for a long time, but it's implications never seem to be considered in the field of Autism. Most diagnosed Autistics are male, how would this impact on the assumption that Autism causes social deficits when there is a gender bias? A lot of the studies I read don't appear to control for gender, only age.

 

It's one of the many little niggles I have about the deficits talked about in association with Autism.

[Frangipani]

Post temporarily removed by moderator

 

Simon

Edited April 2, 2008 by mossgrove

[elun1]

I don't think anyone was claiming to know your son or what it was like to be his parent? As far as I'm concerned the thread was discussing possible effects of the MMR on their children which led on to some of us discussing LFA and HFA. Bid merely said that she works with people with LFA who are DIFFERENTLY affected by their autism. This is the case with my son who is LFA and incidentally is also affected by co-morbids, but it's not meant to be a competition of who has the child most affected by their autism. We are meant to be on here to support each other. This is the whole point of coming to a forum to chat really as no-one is forced to come on here. I've sometimes found things you've said a bit irksome Fran as you do have a very different life to mine which is apparent from reading some of your posts. For example once I logged on here after the most HORRENDOUS day. O had had seizure after seizure and as he's incontinent too I'd been cleaning him up - he's always worse when ill like this too and had been up since 4am which is not unusual. I then read some 'advice' you'd put on about relaxing by things like going for a run on the beach, going out for coffee with a friend, listening to music .... not practical or possible sadly for me as I also have another young child, a job and a husband and home to pay a tiny bit of attention to when I get a minute, which isn't often, I can tell you! I hope this doesn't come over as having a go at you Fran as it honestly isn't but we're all allowed a 'rant' and that really got to me that day. I didn't want to hear about the sun setting over the beach - I'd just been scrubbing the carpet AGAIN!!! Just trying to point out that we can say things on a forum in total innocence but dont have the chance to sort misunderstandings out face to face! I'm not saying your life is a picnic, of couse it isn't and I don't believe anyone has ever said that. We don't know what it's like to look after each other's children andf I don't doubt for one moment that you have horrendous days too. We're meant to be here to be supportive of each other though.

Elun

[bid]

Well, welcome back to the forum, Frangi!

 

Maybe you should re-read what I've posted about LFA/HFA in this thread because I think you've misinterpreted what I've actually been saying? You are concerned about your son's very real difficulties, and all I have been doing in this thread is trying to highlight the difficulties faced by families who care for people whose autism is profound or severe.

 

Where am I 'making doctors out to be quacks'??

 

I don't think I've implied that I disbelieve your son's dx either here, or anywhere else on the forum...

 

I'm not quite sure what I've done to deserve this personal attack??

 

Bid

Edited April 2, 2008 by bid

[mossgrove]

Lucas

 

There is one aspect of your line of argument that I have had trouble following. You have referred repeatedly to the lack of data confirming that there are differences in the degree of difficulties caused by variations in the 'extent' (For want of a better word) to which someone is Autistic. If I have followed your argument correctly all Autistics may be defined as 'equally Autistic' and a number of other factors can lead to the amount of difficulties that the person experiences in day-to-day life.

 

This view of Autism is not one that sits well with my (and many other peoples) experiences of Autism, and I have yet to come acrosss any 'data' that supports this view to the extent that is should be considered inviolate. The fact that levels of functioning may appear closer under carefully controlled conditions could say as much about the nature of Autism and the challenges that many Autistics face as it does about any convergence in the 'extent' of Autism.

 

Where it becomes a concern is that anyone who expresses a view that there may be a differences in the 'extent' of autism is taken to task for being anti-autistic, and it feeks at times that a kind of 'political correctness' is creeping in where only one view on this issue may be expressed without being subjected to accuations of being Anti-Autistic or ignorant, which is why this thread has made people very uncomfortable.

 

Surely we are all on the same side here, even if we may disagree on specific issues?

 

Simon

 

 

Bid, even if it isn't flagrantly obvious now you'd prefer to argue with something I explicitly didn't say or imply, your diagnosis and opinion is beside the point I was making. Everyone has an opinion, it is not without value but it certainly isn't worth as much as what is *known* about Autism.

 

In the great mish-mash of opinions on Autism, the 'romantic' views held by Autistics(which you continue erroneously to place into a hierarchy tier system without justifying why) have never been something that can be described as harmful or leading to harm. The 'opposing' view on the other hand is what enabled a health crisis in the UK and will continue to do so here and elsewhere. It doesn't matter what you or I think, only the end results produced by those ideas.

 

That there are Autistics who are extremely challenged isn't in doubt, the reasons why they are extremely challenged IS doubted and what is generally thought of them has caused harm and needs challenging even if it's from idealistic people who will turn out later to be wrong: at least they will have done LESS harm if not none.

Edited April 2, 2008 by mossgrove

[Flora]

Hi Fran

 

Reading through your post I think you've missed the point of this thread. I think it was out of order to target bid in your post. You put in a 'clause' saying it wasn't personal and telling her to disregard what you say; but how can she disregard it and not take it personally when you've mentioned her name several times and accused her of questioning your honesty? I think that was the most blatant passive aggresive post I've read in a long time.

 

Flora

[mossgrove]

Now, back to the subject in hand...

 

Andrew Wakefield will be thrown to the lions. Not necessarily because his work is flawed, but because it is incomplete and therefore inconclusive, and because he made some errors of judgement along the way... In an environment where the medical 'establishment'/government/pharmacutical industries have a vested interest in undermining his research he doesn't stand a cat in hells chance...

 

BD

 

Apologies if this rauses the temperature in this thread, but I can't really allow that to pass unchallenged!

 

At the core of my objection to Andew Wakefield is that he uses "I must be right because the establishment is against me" as (arguably) the central plank of his argument, which ignores the fact that there are many right-minded people who object to what he has done because what he did was fundamentally flawed and has put children at risk either form being unvaccinated or by being given the single vaccines by unscrupulous and unlicenced practitioners who have rushed to take advantage of the Business Opportunity Andrew Wakefled presented them with. Invoking the bogeyman is used far too often to justify bad science and should never be used as a justification for bad behaviour.

 

 

 

Simon

[florrie]

All that I know is Dr or no Dr, after the MM jab my son shut down completely in days, prior to that he displayed nothing remotely autistic, indeed showed considerable ability for his age... all I want is the truth.

 

 

My son also went into coma after MMR, I myself also had bad reaction to a prescribed drug, which gave me symptoms I didn't previously have,they made me feel suicidal and agitated, and I overdosed on them with another drug and told I was mildly brain damaged, I could not coordinate movements after whilst on the drug I bcame aware of difficulties in communicating but I now believe the drug may have caused it it is very difficult to define exactly in what way it affects some kind of neurotranmission I believe it has affected the dopamine receptor site by repressing so I can't use it. I also discovered with a test I had CYP2D6, not much known about this that I cannot metabolizer drugs that use that metabolic pathway of which there are many and it can kill you to take drugs that use this enzyme to metabolise drugs. Bpoth the drugs I took cannot be metabolized, That is probably why many people do have side effects and bad reactions to certain drugs medications and even herbs and vitamins.

 

 

Zara you mentioned someone HFA commiting suicide in a mental health unit, if they were on medications maybe they were not able to metabolize like I these medications, if they worked why do people commit suicide whilst under mental health care. People should be be tested before being prescribed meds to see which ones are safe. Some info below for those who are sceptical they are orthomolecular scientists

 

http://www.lab-21.com/healthcare/cytochrome.php.

 

 

 

I also think that Andrew Wakefield research may have been flawed and that is what they are using to hang him with, but I feel there is a genuine connection for some people and he has done nothing wrong in trying to find out what that is/was. I would prefer a doctor like that any day to the predjudiced ones I've encountered that have made my life very difficult and have lied like crazy and got away with it no one does anything about that. I'm not able too as I can't organise it. Predjudice is against the law too but doctors that have no understanding of asd get away with that.

 

Just my 2 cents.

 

 

Post Edited by Moderator.Karen A

Edited April 17, 2008 by Karen A

[Lucas]

To summarise my point for Mossgrove, because it's not so much a pointy sword as much as it is a pitch-fork: two rusty prongs.

 

The first is the evidence regarding 'degrees of Autism'. I don't dispute that it might exist, just that no one ever points it out; they don't point it out because I don't think they've actually ever seen any. It's purely because of the 'hierarchy spectrum' myth which originated ironically as one of those 'myth-dispelling facts' about all Autistics being the same and has itself become one of the myths which desperately needs another myth-dispelling fact to come along and tackle it, hopefully without propagating itself into yet another self-sustaining myth.

 

I don't believe that such evidence does exist however because I think it requires us to first understand what Autism is(as opposed to what causes it), which we frankly don't.

 

Please don't misuse the term 'political correctness' like so many trash tabloids do because they can't sell their rubbish by honest dispassionate fact-reporting; it has a very specific meaning and origin. Political correctness is about the expression of ideas through langauge and altering perception through means of langauge: so when people think political correctness is something other than what it really is; it means political correctness is working. Orwell knew it was only a matter of time before his 'Newspeak' term for it would also be subject to the effects of the theory.

 

You have the right to express an opinion, but it can be criticised and sometimes people will agree to disagree. This is not the case on matters of science, which is what the question 'are there degrees of Autism?' is. When it's science, there has to be definitive conclusion. It's so important because decisions are made about people that rarely get a say because of facts that are wrong or merely the opinion of a talking head.

 

The second issue is harm or no harm? As I said, even if I and those that share my views on Autism are wrong: have they caused harm and if so, is it more than the views we so angrily oppose? If that is also the case, is it by a lot or by a little? I think the exact opposite answers would be true: the ideas about Autism held by myself have not caused any harm, will not cause any harm and the views about Autism I angrily oppose have caused FAR greater harm to myself and other Autistics than I ever could have dreamed to cause just by holding the position "I don't want to be cured and I don't think anyone else should be either because of X and Z".

[florrie]

I don't think my post above makes sense now as the name of the drug was removed , I understand the reasons, my intentions were to provide information to prevent anyone going through what I have .

 

There have been 3 panorama documentaries on this drug and the makers are facing criminal investigation as their own research showed it caused bad reactions in some people including suicide and iti s addictive and people are not able to get off it, It was withdrawn after one investigation in under 18s as they knew from there own studies it was causing harm including suicide in children,however they still say once your over 18 it is safe, it took me a year and side effects were horrendous It has also been on the news .

 

Some people do not metabolise certain medications and that includes ssri's and I think that information is helpful to some people as it can cause bad reactions and side effects . And many people cannot get off these drugs due to addictive nature

 

Many doctors are not aware of this ,some are though as they rely on information from the pharmaceutical companies and of course the pharmaceutical companies have a vested interest in this information not being available as they have made 2 billlion pounds from the drug in question alone of course once people are on it they can't get off it,and they mislead the public this was proved on investigation and they had to withdraw it for under 18s as it caused suicide in this age group, and changed the label on the drug saying the side effects that have been found and to get off it you need to do it very slowly, in fact my experience was you had to do it slower than they say by I mg at a time, the particular ssri drug in question being the worst for reported side effects.

 

There is a forum alone for side effects from this drug and it is extremely active as active as this one but I won't name it will give the name of the drug away although it uses the american name not the English one as it is an american forum.

 

I've read on here that people have bad reactions from meds so I wanted to provide info for anyone who may believe they had this and topoint out they have never been control tested on groups of asd people to see if they react differently. But they did cause bad reactions in the normal control group and I have evidence of the studies, I can't really give it without giving the name of the drug away.

 

 

This link provide info for receiving effective medications http://www.lab-21.com/healthcare/cytochrome.php so that you can findout which meds you can metabolize and which one you can't most people will have something they can't metabolise of course the cost would be high to find out. But I did find out I can't metabolize the one I was given and when I reported horrific side effects at the time I was ignored and in fact given more drugs anti psychotics to cope with side effects, I don't metabolise the particular drugs I was given then either. I believe that is why some people have bad reactions to certain medications.

 

On a positive note my research has also included how to clear and activate the metabolic pathway, the drugs inhibit,one is another drug I'll give that a miss I think, but also B vitamins will help and I'm looking for a herb that will replicate the drug that can help clear and activate the metabolic pathway.,and Ihave improved at times since progressing with loads of information I have found out, inthe last few years and I guess Iwill keep going with it.

 

BTW I had hyperlexia before these eperiences so I was already on the asd spectrum but it wasn't giving me as many problems as when I went on the drugs or also perhaps the problems when I then had a child with asd before I knew he had difficulties and I found it difficult to cope as well as with communicating with professionals, as this was nearly 18 years ago now before anything was known about AS, I didn't really comprehend as they were so opposite to mine, we both have savant skills but in the opposite direction as hyperlexia is a savant skill, fluent reading at early age with asd traits,so when he didn't read and talk and 2 and even didn't even at 3 and 4, but could play chess at 2 shows the difference.

 

Zara I really feel for you and relate to your experience ie "welcome to the world of mild autism" I've been there too and it is still a struggle but I've progressed with my knowledge on asd I couldn't get a dx, but eventually got one due to having tests done that demonstrated I was on the spectrum, had difficulties getting appropriate intervention for my son and some of it was abusive, but thankfully when he got a dx from delightful understanding professionals who unfortunateluy do not have now it was a relief but then the predjudice began from those professionals ie education and GP at the time who had no understanding what soever and caused harm which made me severely depressed.

 

I think many symptoms are thrown under the same label as I've now been dx with asd but they refused to accept my dx but dx in since the drug overdose my bad drug reaction is being ingnored as I have also some central nervous system problems that I recently mentioned numb legs dizziness loss of balance which haven't been dx or even been sent to be checked out but now they are using my asd difficulties against me to prevent me getting them checked out, whenI tried to explain the symptoms and that I wasn't explaing them properly due to communicaiton problem or that people were not allowing for my communicatin problem they now say that I'm not happy with anything as that is what asd people are like type of thing and all my problems are anxiety that is her personality because that is what asd people are like. Is it anywonder I feel so angry, and have had to find out everything myself and demonstrate it,Jake had to put up with this predjudice too instead of getting support he needed, I was even told after dx he would end up in prison as that is what happens to them.

 

Well Iwill continue to progress as I don't think this type of thing and predjudice is acceptable at all

Edited April 18, 2008 by florrie

[baddad]

QUOTE (baddad @ Mar 29 2008, 03:03 AM) Now, back to the subject in hand...

 

Andrew Wakefield will be thrown to the lions. Not necessarily because his work is flawed, but because it is incomplete and therefore inconclusive, and because he made some errors of judgement along the way... In an environment where the medical 'establishment'/government/pharmacutical industries have a vested interest in undermining his research he doesn't stand a cat in hells chance...

 

BD

Apologies if this rauses the temperature in this thread, but I can't really allow that to pass unchallenged!

 

At the core of my objection to Andew Wakefield is that he uses "I must be right because the establishment is against me" as (arguably) the central plank of his argument, which ignores the fact that there are many right-minded people who object to what he has done because what he did was fundamentally flawed and has put children at risk either form being unvaccinated or by being given the single vaccines by unscrupulous and unlicenced practitioners who have rushed to take advantage of the Business Opportunity Andrew Wakefled presented them with. Invoking the bogeyman is used far too often to justify bad science and should never be used as a justification for bad behaviour.

 

Simon

 

 

Hi Simon/All - Sorry if I gave the wrong impression... I wasn't saying AW is 'right' necessarily, or citing the establishment's objections to his findings as evidence that he's right... I have opinions on the validity of his work, but I'm certainly not medically trained or well informed enough to know whether it is fundamentally flawed or not. As for any business opportunities for unscrupulous unlicensed practitioners, I would have thought any opportunities created there depended more on how the establishment responded to public concerns, surely? They may not have liked the idea of giving people alternatives to MMR, but if the choice was that or putting children at risk (either by enabling the unscrupulous to corner the market or by undermining their own vaccination programme) and they chose the latter I think that implies negligence on their part - not AW's.

 

The point I was trying to make is that there is a totally unequal 'fight' going on here:

AW is 'taking on' the two biggest industries that exist in the world today (chemical/ agricultural/drug giants and by implication the food industry which relies on the former) and the goverment that depends on revenue and employment from those industries to stabilise both the economy and its own position... And we haven't even touched on the subjects of compensation/accountability yet...

 

As I said earlier: Andrew Wakefield will be thrown to the lions: Not necessarily because his work is flawed ...

 

BD

[Mumble]

it requires us to first understand what Autism is(as opposed to what causes it)

I think this is really interesting - then I tried to think about how it might be answered. That didn't work, so I tried to put in other 'conditions' from the common cold to more complex disabilities - and I still couldn't distinguish between the what is and the what causes it for anything.... Surely autism/cold/broken leg/headache are all collective terms for the symptoms as a result of the cause? Or do you mean something deeper? I'm not arguing with you, I'm genuinely interested in this distinction because in some ways it relates to the work I'm doing (where I've also got myself totally muddled!!! ).

[baddad]

Please don't misuse the term 'political correctness' like so many trash tabloids do because they can't sell their rubbish by honest dispassionate fact-reporting; it has a very specific meaning and origin. Political correctness is about the expression of ideas through langauge and altering perception through means of langauge: so when people think political correctness is something other than what it really is; it means political correctness is working. Orwell knew it was only a matter of time before his 'Newspeak' term for it would also be subject to the effects of the theory.

 

Hi Lucas -

 

I'm a little confused by the above, because when you talk about language you are talking about something that continually evolves, so the origins of a word are irrelevent in terms of 'misuse' because once there is more than one 'meaning' either context is perfectly appropriate - it's just the 'context' that fluctuates.

I'd say for most people the term 'political correctness' has come to imply a sanction of some sort that is applied in a heavy handed manner regardless of the intent of the person being sanctioned. Your use of the 'archaic' interpretation is perfectly reasonable, but much more likely to be misunderstood than the alternative useage... Another example would be the term 'chauvenism', and your own 'Newspeak' is a good one too...

 

The second issue is harm or no harm? As I said, even if I and those that share my views on Autism are wrong: have they caused harm and if so, is it more than the views we so angrily oppose? If that is also the case, is it by a lot or by a little? I think the exact opposite answers would be true: the ideas about Autism held by myself have not caused any harm, will not cause any harm and the views about Autism I angrily oppose have caused FAR greater harm to myself and other Autistics than I ever could have dreamed to cause just by holding the position "I don't want to be cured and I don't think anyone else should be either because of X and Z".

 

Historically I totally agree with you that perceptions of what autism is (and interventions to overcome it) have harmed autistic people. However, that general truth (I'll say that cautiously, because some might disagree with us that it's a 'truth') does not somehow prove (or disprove) some of the very specific things you so angrily oppose or defend. As far as your own beliefs causing 'harm' is concerned, we have far too narrow an historical window to make any assumptions at all. For the most part, they do seem (IMO) to imply an exclusive rather than inclusive ideology, and historically those types of distinctions have done more harm than good.

You do not believe that there are 'degrees' of autism. I do. You believe what you believe because there is no concrete evidence to the contrary. I believe what I believe because there is no concrete evidence to the contrary. We both qualify our belief with 'case history' or 'anecdotal' or 'observational' evidence, all of which is - by defintion 'flawed'

 

Take the emotion out of it, and the implied victimisation (and please don't interpret that as me saying that autistic people aren't victimised, because they are - I just don't think they are victimised in the same way that you do) and you're left with a 'difference of opinion'. When we know more about autism we may be able to resolve that difference of opinion, but in the meantime 'agreeing to differ' on the specifics and a 'united front' on the general principles of raising awareness and learning more seems a sensible compromise.

 

[Mumble]

I'd say for most people the term 'political correctness' has come to imply a sanction of some sort that is applied in a heavy handed manner regardless of the intent of the person being sanctioned.

I thought that's what it did mean? Hasn't there just been something recently about how men are allowed to speak to women? It's total nonsense provided everyone is comfortable with where they are positioned in my book. For instance, there's this guy who goes swimming at the same time as me who I pass the time of day with and he calls me 'love' as in 'hello love' and 'Bye love'. I don't find it insulting at all and I know that he doesn't mean it in anyway (at least I hope not, he's short, bald, pot-bellied and wouldn't be out of place in the cast of lord of the rings) other than as a greeting etc. When I go to where my Mum lives, people are referred to as 'ducks'. I found this most bizarre initially, now I find it funny and can't always stop my self from answering with a quack...

[Lucas]

For a quick lesson on it: the theory about langauge shaping patterns of thought is a very old one, but practical use for it was an idea that came out of the Frankfurt school, attented by Sigmund Freud among others, as a means of covertly establishing a dominant ideology(Marxism in their case). Langauge does change over time, but it does so as the result of the marketplace of ideas driving the neccessity to come up with new ways of describing ideas. It's undirected and uncontrolled. The idea behind the theory is that instead of langauge being allowed to change as the result of circulated ideas, langauge should be directly controlled and the effect will be vice-versa: it will control the circulation of ideas.

 

Orwell called it Newspeak in his books and articles, but it wasn't long before the term Newspeak was corrupted by the same influence it's meant to describe and instead became a label for "something we don't like" rather than 'a method of controlling ideas'. Facism(how often is that word misused?), socialism and patriotism too had their meanings intentionally altered so barely anyone knew what the ideas they described were. In different cultures, they ended up having very different commonly thought meanings. In the 80s some bright spark managed to renew the original meaning by coining the term Political Correctness and fixing the original Newspeak definition to it, but now yet again it's been changed. Depending on who you ask it means "an exaggerated politeness", "the 'normal' political view" or "the centre ground of politics" and "facism".

 

The most simple example of it comes from 1984; instead of a Ministry of Defence we have a Ministry of Peace and it's their job to wage endless war. The message is 'War is Peace'. It's ridiculous but to achieve such an end the instances leading up to it would be incremental. I suppose anyone that read 1984 would have thought George Bush's arguement about why broken pariah states must be invaded was disturbing "We have to fight the enemy over there so we don't have to fight them here at home". It's a War = Peace arguement. Bush is trying to make the idea of war acceptable by suggesting that what it means is different to what it actually does mean. It argues that black is white, up is down and that absolutely everything has a 'middle ground' that is the only place a reasonable person would hold.

 

Sorry for going totally off-topic.

[baddad]

Sorry for going totally off-topic.

 

Hi lucas - No worries, I'm the world's worst for it, and often the diversions are as interesting as the original topics!

 

But now - ahem - and apologies all round

back to the subject in hand.........

 

[owl]

Mmmmm...the terms used are clumsy, aren't they?

 

OK, my understanding would be that what I consider to be 'profound' autism are the young people I have described above, nonverbal, with really no life skills and with SLD. I would then see as 'severe' those with the ability to use PECS/Makaton if they are nonverbal, or limited verbal ability with some degree of life skills, with SLD/MLD. HFA/AS I would see as average or above average IQ. I haven't included the 'obvious' manifestation of the triad in these definitions (or the added complication of co-morbids), as they can be so different and uneven from person to person.

 

Oooh, yuck: this is all so clumsy and I'm not really happy with the terminology but struggle to think of something better, and I'm happy to be corrected!

 

The main point I would make is whether professionals are using labels of LFA/HFA or not, these distinctions from person to person do exist on the spectrum. And in the same way that the stereotypes of Newton or Einstein hamper those with HFA/AS, so do stereotypes of autistic savants or 'Amanda Baggs' hamper those with LFA.

 

Phew...I've ducked down behind the sofa now

 

Bid

hi, can i just say that I think the way you have put this is excellent, and just add something that was said to me 12 yrs ago by aspecialist at Guys when i was racked with guilt for feeling

so stressed and unable to 'justify' my own distress, when my son was intellectually able.( I thought Ihad no right to feel that way in comparison to parents with children more profoundly disabled) When a child or young person is non verbal and in extreme distress, the parent is distressed because they can't ascertain often, what the problem is and therefore feel hopeless and unable to help the child. When a child is intellectually able and often with a vocabulary beyond their years,

they ask heartbreaking questions, can be very aware of the huge disparity between their

academic or general abilities and their social understanding, and the parent can feel hopeless and unable to help the child. Sorry if i offend anyone inadvertently, but we cannot quantify anyone

elses pain or distress, can we? Also I am delighted to find such free and intelligent discussion

about these things. Best wishes to all of you, OWL

[florrie]

Well I can tell you all about "acute distress" in HFA's - my eldest AS brother comitted suicide at 37 directly as a result of problems caused by autism. My remaining brother PDD-NOS is drinking himself to death. Two people I've known online, have killed themselves in the last six months. I am about 10 minutes away from Milton Park Hospital that is full of HFA's, many of whom have had psychotic episodes directly as a result of the stress of dealing with autism. This is the reality of HFA for me - I am homeless, living in a burnt out boat with no toilet or running water and getting no support services. Welcome to the world of "mild" autism.

 

 

I'm not really understanding the debate here in detail on HFA and LFA, but my feeling on it is that most medics and even some experts do not believe HFA is a disability, due to high IQ, I'm a squew like donna williams as my IQ is really low and I was really shocked when I found out and embarrased and horrified for anyone to know as I had thought it was really high as everyone always assumes I'm really intellingent as I appear articulate , I wish I'd never found out etc but am not really able to communicate what I wish but can make small talk far more easily than communicating what I realy want, this small talk thing which used to be considered evidence for not having asd I do not consider myself unintelligent , as the IQ tests do not measure all types of intelligence, it can't pick up myhyperlexia, which is how I get bybut I can' t apply or organise information in a coherent way or usefully,I must have lost some points along the way as I went to a grammar school at one point as a child so must have had higher one then. Donna Williams has an IQ of less than 70 and I wouldn't consider her of low intelligence.

 

One speciaist I saw actually wrote in a report "she is of low intelligence but she doesn't present as someone of low intelligence" I found that really offensive. People/professionals seem to think I'm either more intelligent that I am in one way but also not recognising or understanding the intelligence I do have as it is usually beyond there level inmany ways. One professional said tome well you haven't got to be very intelligent to be interested in nutrition, but she didn't understand the level ofnutrition Iam interested in, which is orthomolecular nutrition and medicine, she assumed it was thelevel she was at which was no understanding what soever, it really takes the biscuit that iput myself in a position with these professionals who think they can comment onmy intelligence in this way when she didn't even understand my presentation of asd even when all the evidence and tests was handed on a plate she didn't have to work at it and she was supposed to be a specialist. They are just unablt to think or make conclusions for themselves she ws probably taught it was one thing and that is all it is.

 

That is how I got myself to a professor who understood my tests phew what a relief but hte gps and psychiatirst would not accept it. They just refuse tol isten to what it is o rhow it affects me,probably because they don't understand, the last psychiatrist I saw said what is an informnation processing problem I don't understand that when I tried to explain he said well your speaking to me aren't you.,so I explained the auditory processing problem and gave him tests and he just dismissed them and said your talking tome but missed the entire point and just tried to find anything to disprove Ihad an asd ie my love of animals he said autistic people do not have empathy and do not like animals Ijust do not understand how they cannot know what an information processing problem is, all mentall illnesses are also information processing problems , they affect neurotransmitters the medications are supposed to increase or suppress certain neruotransmitters and therefore relieve symptoms problem is there is not enough known about neurotransmitters to understand how they affect others this is another interst of mine Ijust give up really and they just decide what my problem is I am not allowed to have an opinon on my own life

 

Unfortunately no specialists in this country although it is more widely recognised in the US understands my squew of problem but just enough from tests I've had ,to accept that it meets enough asd criteria, but I'mnot happy with wht they think my problems are as they just seem to think I'm of low intelligence and that is it but my reading material is nearly all research stuff in my areas of interest by proffessors and i make a lot of conclusions of my own due to experience with own difficulties ie hyperlexia that later mainstream comes tomake the same conclusions and to demonstrate them better than I am able. It has been horrific to realise no one understand your problems at all

 

I feel that HFA is more of a disability as it is more difficult to see what the difficulties are (predjudice) for some people many people do not even get dx and this may lead to mental illness due to lack of understanding and given prescribed drugs that will have an adverse reactions.

 

I have suffered with severe mental illness at times due to feeling so much for my son and watching him decline and the frustration in communicating with authorities getting the intervention and understanding he needed (that is how I ended up on ssri). It was also quite surprising when I discovered in my research to help him that Ihad hyperlexia also has traits of asd that is even harder to see, so you need tests to demonstrate it. and took ages to prove.

 

The criteria for asd is so diverse ( and keeps changing) people can have completely different sets of symptoms for example on the social area you have to fit only two out of 4 well you may have a differnet two to someone else, for example reading body language and facial expressions, is considered a major asd problem but I don't have a problem with this at all, in fact I would say the opposite I have an acute sensitivity to reading this ,I became very good at it as my spoken communication wouldlead tomisinterpretation which caused me stress so I would read situations very well in order to avoid them.

 

I think I fit a slightly different subtype of asd that is not yet widely recognised and it needs to be because I believe I can't be the only one with hyperlexia (ie read fluently at 2) but yet have these probs and I believe that probablylack of understanding and thenmyson's \probs has led me to become mentally ill and the way I've been treated has been horrific, as they now think I'm just obsessed with non existent problems and that I'mjust an attention seeker, but Ihad broken bones and stuff as a kid that never got picked up as I wasn't able to always communciate what I was feeling and when I've tried on my sons behalf it has led to being treated like this which is my idea of a nightmare so I have to demonstrate the difficulties and I will take it as far as I have too.

 

I'm guessing no one will follow what I'm saying here either as usually that is what happens c'est la vie

Edited April 19, 2008 by florrie

[baddad]

Hi Florrie/all - TBH I'm not 100% sure I follow what you saying entirely, but I think from the quote and the description of your own uneven functioning profile you are reiterating what Zarathustra said.

Because this is such a complex and emotive area (and please appreciate that I am not challenging any of what you have said about your own situation - I am only stating that it is not necessarily a typical example of the 'world of HFA' or an example of functioning that is exclusive to autistic people) I'll respond by copy/pasting my earlier responses where I seem(?) to have negotiated those complexities and emotions successfully:

 

Hi zarathustra/all -

 

Zarathustra - I respond to your last post with some trepidation, as the subject matter you have raised is so emotive there are going to be those who judge any response that doesn't concur with your view as heartless or insensitive... I'll risk that, because I feel strongly that this forum should be able to represent all points of view (relevant to autism) without prejudice.

Obviously, none of the following is a direct comment on your situation - which I know absolutely nothing about and am therefore unqualified to comment on (and even if i did and was i wouldn't because I'm not that insensitive!) - but I don't see the connection between your experiences and the point being made about differences in ability across the spectrum (?)

Instead I'll talk about the family of a relative by marriage...

From a family of nine - 4 alcoholics/3 suicides, and (I think) all have had mental health issues at one point or another. None within the family have a dx of autism, and, to my knowledge, autism has never been suspected.

As others have said, no-one here is trying to undermine or deny the very real problems that some 'HF' autistics face. That does not, however, justify sweeping generalisations that there is 'no difference' across the spectrum, or imply that all HF autistics (anymore than all NT's or all physically disabled etc etc as per my last post) face the same challenges and/or react to them in the same ways.

 

Your final comment

Welcome to the world of "mild" autism

would apply equally to people like (ie.) Bid or Flozza etc who haven't experienced what you have, or (with the 'mild autism' reference taken out) to many thousands of people living homeless across the UK who do not share the diagnosis. I'm not trying to remove autism from the equation, but it is part of a much bigger equation that shouldn't be overlooked for the sake of a 'one size fits all' label regardless of the label's origin. I'll return to the point i made yesterday - If such sweeping generalisations were made by medical professionals we would all be up in arms about it...

 

BD

 

and

 

(zarathustra @ Mar 29 2008, 03:50 PM) These descriptions seem good. BUT! how do they relate to the degree of disability and distress of the individuals involved?

 

INMO they don't and can't - because those are individual factors determined by many other aspects of personal make-up that may or may not have anything to do with autism whatsoever. Crippling social fear, stress, anxiety, depression etc etc etc are not exclusive to those on the spectrum, and there's certainly no 'rule of thumb' that can be generally applied across the spectrum of autistic people. As I said yesterday, the language you use (or don't use) to differentiate is almost irrelevant - the difference exists, and is visible within the autistic population. Come to that, it's also visible within the neurotypical population, within the physically handcapped population, within the learning disabled population......etc etc etc.

We are all the 'sum of our parts' - our social networks, our upbringing, our ethnicity, our psychology, our (and so on...) all contribute to the whole person. Autism certainly contributes to the whole person too, but you can't take all of those other factors out of the mix and say an individual is the way they are on the strength of that diagnosis.

 

[This won't however stop me speaking to a room full of PCT minions about the lack of adult services on 8 April, despite the fact I'm already loosing sleep over it.]

 

For some on the spectrum that would be impossible (and possibly irrelevant to) regardless of the amount of support provided - and that's the difference I'm trying to highlight. That doesn't imply a 'negative' judgement of them or a 'positive' judgement of you, and neither does it deny the reality of the stress you describe, but stress at doing something or even stress at not being able to achieve something because the fear is too great is not the same thing as having no ability to recognise the situation in the first place. They are completely different levels of functioning, no matter how inconvenient or difficult it is for us (neurotypical or autistic) to find a mutually acceptable definition.

 

 

BD

[Flora]

I've been following this thread with interest, but I've totally lost the plot now Very interesting read anyway even though I don't understand most of it

 

Flozza

[Mumble]

I've totally lost the plot now

Now?

 

Oh, you mean on this thread? Does it have a plot?

[bid]

Just my thoughts on IQ tests after reading Florrie's post...

 

In my opinion, they are a very clumsy means of measuring 'intelligence'.

 

I perform very badly on IQ tests, because I simply don't 'think' in the right way to do well at completing IQ tests...yet I am manifestly perfectly intelligent (higher degree, yada yada).

 

My dad was an EP, and he always said IQ tests just show how good someone is at...doing IQ tests!

 

Bid

Edited April 20, 2008 by bid

[Mumble]

IQ tests just show how good someone is at...doing IQ tests!

Exactly. And intelligence is often defined as nothing more than what an IQ test measures. I thought the same when I saw the post too. And anyway, I think functioning is very different in terms of what we talk about with autism than what many mean by IQ. I have a high measured IQ, but I love the sorts of items you get in IQ tests, especially non-verbal (I would do those block tests for fun for instance). However, 'simple' everyday tasks may be completely beyond me.

 

I guess there's just a lot we still need to know about ASDs.

[baddad]

I think they should take 'QI' tests into consideration... I'd score far higher in those than I would the standard ones, 'cos the QI sterf is the sterf I'm better at retaining

[Karen A]

I think they should take 'QI' tests into consideration... I'd score far higher in those than I would the standard ones, 'cos the QI sterf is the sterf I'm better at retaining

 

We have three very high scorers in the QI test in our house...shame about me.

[bid]

I think they should take 'QI' tests into consideration... I'd score far higher in those than I would the standard ones, 'cos the QI sterf is the sterf I'm better at retaining

What is a QI test??

 

Is this another 'joke'??

 

Bid

[Mumble]

What is a QI test??

QI is a TV 'quiz' (of sorts) show hosted by Stephen Fry with Alan Davies as the very funny (and very cute ) resident dunce. QI stands for Quite Interesting - you can find lots of clips on You Tube. Basically the questions are intentionally hard and the 'obvious' answer is always wrong, so contestants get points for being quite interesting and lose points for being obvious. It's usual for most of the panel (usually made up of comedians and other such big names) to end up with negative scores. That makes it sound really weird - it is actually very funny.

[bid]

Oh, that QI!

 

Don't laike it, 'cos Stephen Fry is so smuggy

 

Bid

[florrie]

Just my thoughts on IQ tests after reading Fiorelli's post...

 

In my opinion, they are a very clumsy means of measuring 'intelligence'.

 

I perform very badly on IQ tests, because I simply don't 'think' in the right way to do well at completing IQ tests...yet I am manifestly perfectly intelligent (higher degree, yada yada).

 

My dad was an EP, and he always said IQ tests just show how good someone is at...doing IQ tests!

 

Bid

 

Phew I feel slightly more understood now.

 

Thanks

[Bard]

Wayyyy back in college we looked at IQ tests as a diagnostic tool, including Eysenk. We came to the same conclusion, that they only tested your ability to perform well or not in an IQ test.

We also all sat a test designed by black male afro-american students as a response to Eysenk. Their hypothesis was that his tests were biased towards white middleclass middleaged men. Their IQ test required a different background to succeed, but followed Eysenk's design very closely.

All of us uni types failed the test, and came out with barely functioning levels of IQ.

[Laz]

To my understanding there is a school of thought that emerged saying that IQ testing in any part of the autistic spectrum is irrelevant. But then saying that these tests go by the bell curve theory of how the population should be, which is tad bit presumptive for a start. But on the otherhand when you break them down into more narrowed areas of interest quite a few studies have tried to attach a link between a high verbal IQ and better life outcomes in children with autism.

 

With regards to the confusion that appears to have come about on this thread. I have been under the impression that by far the greatest confusing factor in autism is that most carers and professionals have a difficult time seperating learning disability from autism and that is were the confusion lies. There are also people who have "aquired" autistic behaviour through trauma that has resulted in some kind of brain injury. The most stupid label i've come across is "autistic traits" i mean what on earth are they going on about? In the future are people going to start saying they have low functioning asthmatic traits? Its a bizzare use of language that could do with being stopped ASAP.

 

I find that rather strange given that the valuing people document pretty much states clearly that autism in of itself is not a learning disability but that people with autism can have a LD in addition to being autistic. Just as autistic individuals can be gay or be from ethnic minorities or have downs syndrome or any other social characteristic.

 

In the future I imagine they will be revising the diagnostic criteria because even Lorna Wing has not been happy with the out come of the Asperger syndrome diagnosis being semi-detached from autism. She did an article called "Opening Pandora's box" awhile back looking on the decade since the introduction of the asperger diagnosis.

 

And with regards to the MMR doctor. IMO he was an arrogant fool when he worked at the Royal Free, he's an arrogant fool now.

 

Hi Laz - I've tweaked the last bit of your post in line with forum guidelines. While your opinion's are perfectly vaild, the final sentence - speculating on his motivations - was a bit too personal, given the usual forum policy not to comment directly on professionals. - BD

Edited April 20, 2008 by baddad

[florrie]

Thanks Baddad for info.

 

usually lose the point of what I'm trying to say and go off on a tangent

 

I don't have a squew on the IQ test as Ihave understood is usual with aspergers

 

But I do have amassive squew between auditory and visual processing, ie photogrpahic memory for letters and digits I di not know Ihad until tested hence hyperlexia and excellent memory of certain facts, but auditory processing can't even follow a short paragraph and retain any info designed for 5 year old, hence this squew causes an in ability to form a gestalt ( a whole) so all I see is bits and details of the bits and therefore causes problems make meanings losing the point of things etc even though Iusually know what I want to say I can't actually get it out as I got off on tangents, and affects communication. The auditory deficit can be addressed I think it is available for children on the NHS ins some places but not adults.

 

I believe Ihave a subtype of aspergers that does not quite fit the usual criteria ie in fact sometimes the squew is in the opposite direction to what is considered "normal" for asperger due to the hyperlexia therefore Iprefer to use the term hyperlexic as that is what I have despite the symptoms being the same as Aspergers

Edited April 21, 2008 by florrie

[BusyLizzie100]

When DS2 was assessed by Ed Psych, his results were so high in some areas and so low in others that she said she could not get an appropriate reading ie she couldn't say what his IQ was.

 

Judging from the tests he does not have general learning difficulties, but his cognitive profile is actually far more complex than this. She explained that this means in some areas he is well above average and in some areas well below average; in the latter areas he is well below the profile of a child with general learning difficulties, which may have its ups and downs, like most profiles, but not the huge spikes that often come with autism.

 

When DS1 was assessed at the age of 7, he was found to have a verbal IQ of 134 and a spatial IQ of 87. Either one of those figures on their own would be significant, but together the discrepancy between them is enormous.

 

And I'm not going to comment on the MMR bit. Sorry, I know that was the original thread; maybe we need a new one for IQ??

 

Lizzie

Edited April 21, 2008 by BusyLizzie100

[bid]

When DS2 was assessed by Ed Psych, his results were so high in some areas and so low in others that she said she could not get an appropriate reading ie she couldn't say what his IQ was.

 

Same thing happened with my DS when he had his WISCs done at 6.

 

His verbal IQ was 145, but his performance IQ was so uneven they couldn't give us his overall IQ which is a combination of the two I believe.

 

Florrie: I would have thought that the discrepancy between your auditory and visual processing is just that, a discrepancy, and not indicative of you having a 'low intelligence'??

 

Bid

Edited April 21, 2008 by bid

[Karen A]

Same thing happened with my DS when he had his WISCs done at 6.

 

His verbal IQ was 145, but his performance IQ was so uneven they couldn't give us his overall IQ which is a combination of the two I believe.

 

Florrie: I would have thought that the discrepancy between your auditory and visual processing is just that, a discrepancy, and not indicative of you having a 'low intelligence'??

 

Bid

 

Ben also had an unusual profile.He is really very strong in some areas but needs support in others.I think it can make things more complicated...for example he has the vocabulary of an 18-21 year old but emotionally he is probably at the level of a five year old.People frequently expect far more of him than he can manage in terms of his emotional responses and behaviour.Ben also becomes very frustrated.Karen.