The doctor who sparked the MMR vaccination debate

[baddad]

... Hmmm ...

One thing that bothers me in this thread is the assumption made by some posters that the problems they (and others with 'HFA/AS' diagnoses) face arise specifically from autism when in other circumstances the view would be that those problems were either co-morbids, or arose from social responses to their condition rather than the condition itself... That inconsistency is very unfair, because depending on the argument the 'spin' can be used to gainsay pretty much any response that doesn't fit their model of autism...

 

... Using the 'medical models' of physical disability and wheelchair use that so often get pulled in to the equation... Would anyone offer an argument to suggest that a one legged person experiences the 'same' degree of disability as a paraplegic? In terms of a 'spectrum' of restricted movement and access, they could share many of the same issues, but you couldn't begin to broaden that out to imply that their experience was the same. Is someone just starting to feel the effects of, say, arthritis (or any other degenerative disease) experiencing the same difficulties as someone effectively crippled by the same condition in an advanced state? They may share the same diagnosis, but their expectations, opportunities and experiences are poles apart...

Whatever language you use (mild/less profound/severe/more profound) the issues faced by some autistic people differ massively from those faced by others, and that's not 'nonsense' or 'disingenuous tripe' - it's a visible reality that can be seen in any residential care home populated with autistic people who have need of such high levels of support that they cannot be met in any other environment.

That implies no 'value judgement' on people at either end of the spectrum, and doesn't in any way deny the very real problems that any autistic person may face, but puleeze stop persisiting with this 'one size fits all' argument- because if such sweeping generalisations were made by the medical establishment we would all be up in arms about it....

 

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

[bid]

Bid's own comments are pretty obvious.

 

 

 

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.

 

First of all, Lucas, I have a formal dx of AS myself so I am not 'just' a parent.

 

(I have to say that in general terms I often feel on this forum that my dx is ignored in discussions about autism/disability.)

 

Secondly, I haven't tried to be 'manipulative' at all. I have no idea what you do, Lucas...I think you might have once said you taught dance classes?? Anyway, for all I know you might work in a residential care home, either as a volunteer or as staff. That is why I asked about any experience you might have had...for example, someone I used to work with did a course on dance therapy funded by my place of work.

 

Now, and this is a genuine question because I honestly don't understand: are you saying that research has proved that there is no cognitive difference between severe autism and HFA/AS? Sorry if I'm using a simplistic model, but do you mean that if you take me with AS (married with 4 kids, a higher degree and working full-time) there is no difference cognitively with some of the young people I work with who are non-verbal, can't use PECS or Makaton, still wearing pads, subject to bouts of acute distress and self-harm when it is almost impossible for care staff to work out what is wrong?? I simply don't understand or see from my personal experience how this can possibly be true??

 

I am not trying to be manipulative or 'clever' here, Lucas...I genuinely want to understand about your argument that there is no such distinction between severe autism and AFA/AS. Zara said that HFA/AS is 'not all Newton and Einstein'...well, in my experience, profound autism is 'not all Amanda Baggs'

 

Bid

Edited March 29, 2008 by bid

[Guest Lya of the Nox]

please can we stop this now

please

[baddad]

Hi Lya -

 

I've PM'd you, as I'm not sure what specifically is problematic in this thread(?)

 

BD

[bid]

Lya <'>

 

I'm not trying to have an argument with anyone...I genuinely want to understand a point that Lucas has made on more than one occasion.

 

Bid

[zarathustra]

First things first. Can we have a definition of LFA vs HFA? Some specialist ASD professionals [eg at Milton Park Hospital], refuse to use these labels.

[Guest Lya of the Nox]

i ok

just did not want a huge row growing

ignore me

xx

[zarathustra]

Lya, a big row won't be very useful to anyone; But it gets very emotive when people start discussing things like this. I'd like to find some common ground, because we're all here because of autism. I certainly won't ignore you. Perhaps we could start another thread without your name attached?

[bid]

First things first. Can we have a definition of LFA vs HFA? Some specialist ASD professionals [eg at Milton Park Hospital], refuse to use these labels.

 

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

[zarathustra]

These descriptions seem good. BUT! how do they relate to the degree of disability and distress of the individuals involved? LFA doesn't necessarily equate with constant discomfort and unhappines and believe me HFA doesn't mean I spend my time joyfully polishing my Nobel Medals and writing symphonies. The vast gap between my interlectual and social functioning reminds me constantly of how disabled I am. [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.]

[baddad]

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

[Lucas]

Bid, I'll put it as simply as possible.

 

The plural of ancedote, is not data.

[bid]

Bid, I'll put it as simply as possible.

 

The plural of ancedote, is not data.

 

I'm sorry, Lucas, but I simply don't understand what this means??

 

Bid

 

ETA: Having thought about it, do you mean that my professional experience of working for quite a few years with young people right across the spectrum, as well as my own autism and the 19 years of being the parent of another autistic, is purely anecdotal and therefore worthless in your opinion...while your reading of a research paper is scientific fact and therefore unchallengable? I would be really interested in a link to this particular research that proves there is no cognitive difference between LFA and HFA children.

 

Edited March 29, 2008 by bid

[kellyanne]

I'm sorry, Lucas, but I simply don't understand what this means??

 

Bid

 

 

You and me both!!

[bid]

These descriptions seem good. BUT! how do they relate to the degree of disability and distress of the individuals involved? LFA doesn't necessarily equate with constant discomfort and unhappines and believe me HFA doesn't mean I spend my time joyfully polishing my Nobel Medals and writing symphonies. The vast gap between my interlectual and social functioning reminds me constantly of how disabled I am. [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.]

 

Absolutely, Zara...and I have worked with young people who are severely autistic, yet live happy and purposeful lives. The profoundly autistic young people I was referring to earlier are often in acute distress (and to come full circle) originally I was citing this as a possible reason why some parents might feel their children had been 'ruined' if they felt that their level of profound disability had been caused by the MMR.

 

As I have said, but it often seems to be overlooked, I have a dx of AS myself...so I know all too well about the unhappiness and mental health problems that can be part and parcel of this. BUT, the difference (as I think BD was expressing) is the fact that no matter how compromised my abilities may sometimes be, I do actually have these abilities in the first place...which is something those with profound and severe autism simply do not have in the first place.

 

Bid

Edited March 29, 2008 by bid

[zarathustra]

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.

[bid]

Zara, I have said again and again in this thread that I understand the difficulties of HFA, being autistic myself and having gone through mental health problems, etc...as far as I can see, absolutely no-one on this thread has called HFA/AS 'mild autism'??

 

I don't think anyone here is trivialising the often acute problems faced by adults with HFA/AS, and your situation sounds desperate and completely disgraceful with regard to support services.

 

BUT, I personally find it uncomfortable when LFA is almost 'romanticised' by some others on the spectrum, as though people with profound autism are all Amanda Baggs stereotypes just waiting for a voice...that is just not the reality.

 

Bid

Edited March 29, 2008 by bid

[elun1]

No-one has said HFA and Aspergers are mild forms of autism. We all know, I think, that they can bring about terrible mental distress at times, often as a result of a lack of appropriate support and services. Sometimes when looking at my own children the eldest who I think is AS though no diagnosis as yet 'suffers' more as he knows he has differences and finds them upsetting as he wants to fit in. This causes him mental distress in a different way to ds2 who is severe/profound with additional SLDs and epilepsy. He has NO idea even of what different means. He is incontinent and rocks, hums,jumps as a means of self expression. He will self harm and harm me too if he gets in a temper. It's a different way of 'being' but I have different ways of dealing with this. I know he'll be dependent for life whereas I can at least teach ds1 strategies he can use which will lead to a different level of functioning for him. Hopefully he CAN be taught independence whereas ds2 does not have this level of cognition. I'm afraid you must be wrong about that Lucas as ALL individuals do not have the same level of functioning even if they're NT. Why should it be different if you are autistic?

Elun

[baddad]

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

[bid]

I am going to bow out of this thread now.

 

I'm afraid I don't feel comfortable posting as someone with AS on this forum...this thread has shown yet again that my posts are so often responded to as though I have no knowledge or understanding of what it means to have AS. I don't know whether this is because my dx is doubted (although I'd have thought SBC's clinic was fairly water-tight), or because I am also a parent, or because I choose not to share my more severe difficulties on the forum.

 

Maybe I'm being over-sensitive, although in the past others have echoed this observation. I haven't written this to get supportive posts...I am expressing an observation, made without any anger, and I am honestly not having a hissy fit!

 

Autism has as many expressions as there are autistic people: there isn't one voice of autism.

 

Bid

Edited March 29, 2008 by bid

[elun1]

<'> Bid

This will be my last post on this particular thread too. I just wanted to say that I really value your opinion a lot because you are experiencing autism directly yourself BECAUSE you are autistic. Also because you are a mum just like me who supports your autistic child. And last but not least I hang onto every word about posts about the people you work with because they sound so like my son and I always wonder what the future holds for him.

Elun xx

[Frangipani]

Hi,

 

No I am not back. Life is truly hectic at present.

 

Have to say I have read this topic with interest. As my son was like a "Case Study" or would you call it "Guinea Pig over this whole MMR debate.

 

We all know he was showing signs of Autism at 2 diagnosed at 4 then later other co-morbids thrown into the mix etc. Told he was severely disabled by his condition in Kindy/ Year 1. Put on meds that had a profound improvement on him fitting into mainstream schooling. When he turned 12 things went completely pear shaped and meds were changed.

 

He had ongoing Special Ed. support 1-1 all the years at school. Except once in high school, I had to fight for everything he got. We went back into private speech therapy when he was 14 as his English teacher whom I rang monthly advised me he was really falling behind his peers for the first time quite drastically.

 

Soon after when he turned 15 he had two things - major going on in his life, work experience for two weeks and an MMR injection booster at 15 which I found going through the calendar - he suffered extensive bouts for Irritable Bladder Irritable Bowel, Panic attacks etc. One week after the injection, precisely all these things happened. I spoke with 3 consultants at the Autism Association in Australia and they all said that it sounded like the measles virus had spreak in his bowel. This can happen after having the MMR. This whole nightmare lasted 3 years with being admitted to hospital for bladder retraining etc. etc. The specialists advised this is a common condition of people diagnosed with Autism and said he didnt beleive the MMR injection was the cause.

 

I ended up on a Sydney Radio debate about it and stated that I believe that there is a percentage of kids that just cannot tolerate this injection, and my son is in that category. I along with the Autism Association still believe that too a point. But, an interesting thing happened while that debate on the ABC radio was happening and a lady who stated she had years of experience with Autism advised that she disagreed with the Autism Association and the fact these symptoms occured one week after the injection for my son age '15' she said, my son would have had those same symptoms with or without the MMR injection. I refused to accept this theory, and virtually had the radio on my side. Stating there is a percentage that simply cannot tolerate it.

 

So cut to the chase, 5 years later I sat my son down and asked him what did he think happened. Did he believe it was the injection or something else.

 

Surprise Surprise. I used to work as an Accountant for a top 10 IT company but left and went into my own business. My son needed to get two weeks work experience, so I rang them, they were happy to take my son along for the two weeks. They had all the documentation about his meds and were happy to assist and make sure he had his meds on time etc. This company environment I worked for for 4 years was like one big happy family, I only left as I got tired of all the travelling and having to do financial reporting at 2am for the US every month it was exhausting and time for a change. But the people were lovely. Like one big happy family, big brother was always looking over our shoulder to ensure work was priority number one, but they really looked after us socially, etc, sports teams inter company netball teams, mixed men and women, the atmosphere was relaxed but pressure to achieve. I thought my son would walk in and the environment would fit like a glove. My son said every Tuesday we had to all attend a department management meeting and they encouraged him to come along. Only like 12 people sitting around a conference table for two hours. My son said to me he believes this is what did it for him. He had to keep running off to the loo, it really freaked him out, and they were all really nice as they all knew he was my son, they even had photo's up on the board still of me at the Christmas party and various other social events and group photos they had, so they really made him feel at home. They were laughing about a photo where I had to dress as the blonde from Abba for a Karaoke prank for a christmas party with a group of others the make people laugh. So, the atmosphere was homely.

 

The majority of the time he was in a 'hub' technical room with the IT gurus and my brothers, brother in law worked there, so he was even there to look out for him.

 

But all this aside, my son believes this environment, change to his routine, having to leave home at 7am and return home at 7pm, I drove him there and back each day. It was all too much. He said the stress of this is was resulted in him having a nervous breakdown. Not the MMR, so the lady on the Radio was right. According to my son.

 

He still has major trouble with anxiety and has had to remain on meds for anxiety since the age of 15. We have tried to reduce and remove them, but this only results in a panic attack.

 

Going to the shopping mall, I tried to convince him into sitting with me for lunch, he broke out into a sweat, and virtual close to a meltdown as he said mum, take me home I cant handle this.

 

He has ups and downs, every now and then he has milestones where he can do xyz without blinking an eye, then I call it male PMT just to make him laugh when he cant do xyz.

 

He is a work in progress. I still am learning and so is he.

 

He watched 'House' the program for Aspergers, they had a definition at the end of what Aspergers is, and he said wow thats me mum. But my son has many other co-morbids, that just make his life a little more difficult. So even though I have been a parent of and ASD son etc etc, but its interesting reading the many aspects and definitions of what AS and HFA are as you say they vary from person to person so much.

 

My son home ed's, we are trying to get him to finish his IT Certificate he has tried without success over 3 years to to 'anxiety' but he wants to push on. The teachers say he is one of their 'brightest' students.

 

The fear is, will all the above happen again, if he gets a job.

 

A fear, I have day to day, it was awful seeing him in so much distress, and crying, and the 'fear' was overwhelming for both of us.

 

So its still a day at a time. But according to my son, my theories of the MMR are not valid., The Autism was contributing to this .

 

Its just trying to find a happy medium for him. That I imagine is what many people with HFA or AS struggle to find the balance.

 

Society that understands. As a parent I feel like a total dunce at the best of times, I feel like I should have been able to work this out. But I am always learning, and my son is the one teaching me.

 

Just needed to say this for the sake of this thread and the MMR.

 

Take care all,

 

All the best

 

love

Fran xx <'>

Edited March 30, 2008 by Frangipani

[Lucas]

To elaborate a bit; I have a certain view about Autism and others have different views. Avoid the fallacy of 'seeing all sides' because usually these are views which are mutually exclusive: if certain views about Autism are true, than mine is absolutely false and the reverse applies also. It isn't a matter of opinion. Ancedotes are not evidence, whilst they are important, they are not of equal value to evidence unless they are tested in the same way.

 

The deficit in Autism is unknown, but everyone has an opinion on it anyway. Like if we didn't know blindness was a vision impairment and we instead defined blindness based on how blind people behave, which would ironically share some simularities with Autism on paper. The deficit is unknown and yet we still have a perniculous distinction between those who must so obviously have more of this unknown deficit whilst there are others that have less and these are easy to tell apart because those that have less of it are more able.

 

Science isn't perfect but under neutral and controlled conditions the supposed deficit appears to be considerably less than what ancedotes often describe. Based on this I don't think anyone has ever observed an Autistic, nor has an Autistic that we know of ever had the chance to develop in a completely neutral enviroment where all the factors by coincidence(because no one is sure what those factors exactly are) favour Autistic-style development.

 

But no, Autism research direction and decisions for the best part five decades in the UK has been driven entirely by those that think their sad sick stories count for everything and that the big gaps in what little we know can be adequately filled by emoting. It's only AFTER Autistics actually start getting heard that research into what Autism is, rather than what causes it(for the purpose of getting rid of it without knowing what it is) actually got moving.

 

Don't take that the wrong way Bid: it's not specifically because Autistics themselves got heard, it's just that only when they did was there anyone to speak out against the status quo. It was all being directed by parents and parents are pretty much unchallengable in this regard. The only people with greater right to talk about Autism were Autistics themselves. Anyone at anytime before Autistics started writing on the internet could have challenged the whole 'cure at all costs' ideal; it's just that they would have to be arguing with shrill and angry parents that according to society's values are beyond reproach, even to the point that some still get away with dangerous experiments on their Autistic children.

 

There are few things I can say that someone won't find anything to argue with, and I think most of above generally would even if it's come out of bottled up anger. But another one would that there is nothing an anti-cure individual can say whilst espousing their view that would cause or in any way contribute to a public health crisis. The same can not be said of the views on Autism I strongly disagree with, because they rely on making claims about a deficit they know next to nothing about.

[bid]

The only people with greater right to talk about Autism were Autistics themselves...

 

Although apparently what I have to say, as someone who is autistic too, is worthless anecdote.

 

And still no link to this research paper??

 

Thank you, Lucas, for neatly highlighting the observation I made in my last post.

 

Now I am pee'd off!

 

Bid

Edited March 30, 2008 by bid

[Guest Lya of the Nox]

see now this is why i was worried

yet again bid for some reason is not listened to!!!

<'> bid

x

[Mumble]

And still no link to this research paper??

Is this the paper you're looking for:

 

Development of low and high functioning autistic children?

 

It's a bit old now (1992) given developments in the field. You might not be able to open it because I think it's one my uni subscribes to, but you should be able to get the abstract.

 

I'm sorry if I've given the impression that I doubt your dx, because I don't - I think it would be rather foolish of me to doubt a dx from the same well established clinic my own dx was from!

[MelowMeldrew]

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.

[bid]

see now this is why i was worried

yet again bid for some reason is not listened to!!!

<'> bid

x

 

Don't worry Lya <'>

 

Not anymore, just weary resignation...

 

Bidx

[bid]

Now, here is one little hissy fit, and then I really am outta this thread!!

 

There appears to be quite a militant faction amongst the HFA/AS population who I believe misrepresent and romanticise LFA.

 

I do wonder, in my more cynical moments, just how many of them are actually caring for those with profound and severe autism and physically working with them to improve their lives in a practical way?? Mmmmm...didn't quite catch the reply there!

 

Sorry guys, just my own little moment of sweeping generalisation...

 

Bid

Edited March 30, 2008 by bid

[baddad]

The deficit in Autism is unknown, but everyone has an opinion on it anyway. Like if we didn't know blindness was a vision impairment and we instead defined blindness based on how blind people behave, which would ironically share some simularities with Autism on paper. The deficit is unknown and yet we still have a perniculous distinction between those who must so obviously have more of this unknown deficit whilst there are others that have less and these are easy to tell apart because those that have less of it are more able.

 

Hi Lucas - you raise some very good points in your post, many of which I agree with to a greater or lesser degree, but none on the specific point of degrees of disability across the spectrum and the importance of acknowledging those differences...

Using your own analogy of the unknown 'blind deficit' it's like grouping together the visually impaired with those who are completely blind, and the two things are completely different... looking at eyesight deficit across a spectrum, your own rules of assessment would place me (now needing reading glasses) in the same category as somebody permenantly blinded in an industrial accident (or the 'unidexter' - to quote Peter Cook's brilliant tarzan sketch - I mentioned in my original post in the same category as the paraplegic)...

Yes, your point that autism is an 'uknown' deficit is right, but the fact that it's unquantifiable doesn't imply that it's the same in every case - that's exactly the kind of assumption you generally argue against. In the case of an 'unknown' deficit, we can only measure the effects - there's nothing else to measure - and in the case of autism there is overwhelming evidence that different people are affected differently, which, while not providing 'concrete evidence' is enough anecdotal evidence to suggest that either there are differences in the degree of deficit and/or differences in the physical and/or psychological make-up of the individual that form part of a bigger equation. Both are 'assumptions' (because we're dealing with an unknown), but it seems far more likely and appropriate to me (and I'll use Peter Cook's unidexter again here) to assume that the unidexter is 'deficient to the tune of one' and that a person with no legs is 'deficient to the tune of two' than to assume that they are both 'deficient to an unknown quantifiable but have developed different strategies for coping with it'.

 

Mumble. I tried to open your case study, but you are right - it won't open for the general public... If you download the PDF and use a fileshare site (like the one I used for The Princess And The Peas story) you could send a copy to bid that way... as the links are 'link' password protected it would only be available to bid, as effectively as you printing off a copy and passing it to her.

 

BD

[Karen A]

Hi All.I had not posted on this thread up to now and am very aware that some people here feel that my opinion is of little value since I am only a parent and pretty much unchallengeable.

Ben has many difficulties and frustrations in his life and a large proportion of my time and energy is taken up with supporting him.The last couple of years have been tough for all of us.

However one of my closest friends for many many years has a son who would probably described as profoundly autistic.I would not dream of suggesting that the experience of my child and our family in any way compares with the difficulties that my friend faces.Her son can be extremely distressed and it is almost impossible to find out the cause of his distress...it is heartbreaking to see.

 

I also think it worth adding that I do not in anyway wish to suggest that those with AS do not have challenges.

I am also only too painfuly aware of the impact of mental ill health on a family.Karen.

[Flora]

Just reading through this thread and feeling quite angry that parents get such a slating for doing all they can to help their autistic children, often in very difficult circumstances (ie, having other children to care for, jobs to go to,houses to keep clean, meals to cook, clothes to wash, bills to pay etc etc, and in some cases being autistc themselves!). The vast majority are doing all of this, and the things they try to do for their kids with the very very best of intentions and with overwheling love for their children etc. I know I'm not making a very coherent argument but it's one that is being overlooked by this 'militant voice' in the world of autism. A friend of mine has a severely and profoundly autistic son and believe me I wouldn't be in her (or her son's shoes) for any price. I would not insult her or her family be suggesting for once second that there is no difference between their life and mine. She can't even leave the house with her son now because he's 6 foot 4 and she can't control him. He goes to a 52 week residential school and that is the only option for them because she is not physically strong enough to care for him. How blinkered an insulting to suggest that her situation is no different or worse than those with more higher functioning autism to deal with. I make no apology either for my phraseology because that's the way it is!

 

Also, on a different point, please don't let us go down the dx snobbery route! My dx comes from a private source, and furthermore that source is the husband of a personal friend. Does this make my dx anymore valid than others? Maybe in the eyses of service providers it does (which is irrelevent for me because I don't need any 'services'), but hopefully not in general terms.

 

Flora

[bid]

Sorry, Flora..I wasn't meaning to be snobby about my dx...just trying to get some acknowledgement from some posters in this thread that I am autistic too

 

Bid

[Flora]

Sorry, Flora..I wasn't meaning to be snobby about my dx...just trying to get some acknowledgement from some posters in this thread that I am autistic too

 

Bid

 

 

Bid, I know you weren't! I was referring more to your reference that people might be questioning your dx and that your defence was the source of your dx, and it made me realise that if anyone were to question mine I don't have such a defence because even though it was from a reliable and qualified source it doesn't come with the same gravitas. Sorry if I've offended you, I really didn't mean to, it's hard to get the point accross in here without it appearing that there is offense taken or meant, but there's none at all. <'>

 

Flozza X

[Mumble]

Mumble. I tried to open your case study, but you are right - it won't open for the general public... If you download the PDF and use a fileshare site (like the one I used for The Princess And The Peas story) you could send a copy to bid that way

Pass (that's not that I don't want to send it to you Bid. It's that the techno-knowledge of BD's suggestion went straight over my head - in a metaphorical sense - I'll bring a copy to Greenwich if you're interested!!!) But the abstract says that:

 

"Aspects of developmental sequences and structures were assessed in low- and high-Functioning autistic and non-autistic developmentally disabled children. Specific developmental issues examined included sequences, regressions and profiles. Classification into the high- or low-functioning groups was based on a full stale IQ cutoff of 50.

In general, there were few differences in the sequences of development among the groups.

However, the autistic children were more likely than non-autistic children to display developmental regressions and unevenness across developmental domains. These

developmental peculiarities were more pronounced in the low- as compared to high-functioning autistic children.

These findings are discussed with regard to issues of developmental processes, classification and autism."

Which would suggest on this evidence (and this is only one older article - interestingly I couldn't find anything more recent and I was astonished at how much of the research literature focuses on HFA) that the underlying deficits are the same, but that these are more pronounced in LFA.

 

I think deficits however, are different to difficulties. As far as difficulties go, we are not talking about different degrees of the same difficulty, but different difficulties. These may be caused by the same underlying deficit, but they of course manifest in different ways given context, both of the individual and the environment. (Possibly) same deficit manifesting as different difficulties. Does that make any sense?

 

There appears to be quite a militant faction amongst the HFA/AS population who I believe misrepresent and romanticise LFA.

Eek, I hope you're not including me. My brother's life as 'romantic' - erm, nope. The only thing I do sometimes envy (and sorry if this distresses anyone but it's the truth about how I feel) is that I think he's totally unaware of any other way of being, whereas I am acutely aware of my differences and it is that awareness that can heighten my fears and anxieties. But dependant on others 24 hours a day, 365 days a year, for potentially the next 50 years - nope, nothing romantic in that.

[Lucas]

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.

[bid]

Well Lucas, we must agree to differ: you can continue to be idealistic, and I will continue to provide practical support and care for those autistics who are extremely challenged...

 

Bid

Edited March 30, 2008 by bid

[baddad]

"Aspects of developmental sequences and structures were assessed in low- and high-Functioning autistic and non-autistic developmentally disabled children. Specific developmental issues examined included sequences, regressions and profiles. Classification into the high- or low-functioning groups was based on a full stale IQ cutoff of 50.

In general, there were few differences in the sequences of development among the groups.

However, the autistic children were more likely than non-autistic children to display developmental regressions and unevenness across developmental domains. These

developmental peculiarities were more pronounced in the low- as compared to high-functioning autistic children.

These findings are discussed with regard to issues of developmental processes, classification and autism."

Which would suggest on this evidence (and this is only one older article - interestingly I couldn't find anything more recent and I was astonished at how much of the research literature focuses on HFA) that the underlying deficits are the same, but that these are more pronounced in LFA.

 

Hi Mumble -

Hmmm... goes to show how difficult interpreting anything to do with autism is, because I arrived at a different conclusion from you based on the same abstract...

It justs suggests that 'uneven developmental profiles' are more pronounced in LFA than HFA, which is exactly what I would expect(?). It doesn't (to me) suggest that the underlying 'deficit' is the same and that they are just responding differently...

Most of the research I've read explains autism as a physical difference in brain structure... that being the case, it seems logical that the greater that degree of difference, the more profoundly (in terms of the NT 'norm') affected the individual will be. In one (basic) sense, I suppose the 'deficit' is the same, because you are talking about differences in neurological development in both cases - but if you widen the parameters that much then all neurological difference is autism, isn't it(?) It's like saying a headcold is the same as Asian flu because they are both caused by viruses....

 

BD

[pookie170]

Most of the research I've read explains autism as a physical difference in brain structure... that being the case, it seems logical that the greater that degree of difference, the more profoundly (in terms of the NT 'norm') affected the individual will be. In one (basic) sense, I suppose the 'deficit' is the same, because you are talking about differences in neurological development in both cases - but if you widen the parameters that much then all neurological difference is autism, isn't it(?) It's like saying a headcold is the same as Asian flu because they are both caused by viruses....

 

BD

 

 

Can't remember if I've posted this before, and its a bit off topic, but the neurologist who my son had a few consultations with said something (I cannot quote, twas too long ago, and Ican't find relevant research!Been I while since I looked, right enough...) along the lines of this...

When babies are born the brain can use many neuro pathways to send a 'message' in order to carry out a task, for example, grasping an object, verbalising, making a facial expression. This would include also behavioural responses and recognizing social behaviours in others. The brain will try them all out until it finds the quickest, most efficient pathway for each task, then'choose' that one, and the other, less beneficial pathways break down.(He said that) In autistic people, it seems that this does not happen as effectively, (in my son's case, especially where social/behaviourl stuff was concerned) and you can end up with several remaining pathways, which leads to neuro confusion, time delays and sometimes the inability of that task to be carried out at all.

 

 

.......

 

As I say, I can't back this up, but it made a sort of sense to me. Some things Cal can work out given a little extra time..... I really hope this doesn't annoy anyone!!

 

Esther x

[Mumble]

It's like saying a headcold is the same as Asian flu because they are both caused by viruses....

They are in men, aren't they?

 

Erm ... pass on the rest though - I guess we just don't know